Chronicity Enquiries Making Sense of Chronic Illness

Chronicity Enquiries
Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

Downloaded from Brill.com 10/10/2023 08:22:17PM
via Vienna University Library
Probing the Boundaries
Series Editors
Dr Robert Fisher Lisa Howard
Dr Ken Monteith Dr Daniel Riha
Advisory Board
James Arvanitakis Simon Bacon

Katarzyna Bronk Stephen Morris
Jo Chipperfield John Parry
Ann-Marie Cook Karl Spracklen
Peter Mario Kreuter Peter Twohig
S Ram Vemuri Kenneth Wilson
A Probing the Boundaries research and publications project.

http://www.inter-disciplinary.net/probing-the-boundaries/
The Making Sense Of Hub

‘Chronicity’
2013

Chronicity Enquiries:
Making Sense of Chronic Illness
Edited by
Zhenyi Li and Sara Rieder Bennett
Inter-Disciplinary Press
Oxford, United Kingdom

© Inter-Disciplinary Press 2013
http://www.inter-disciplinary.net/publishing/id-press/
The Inter-Disciplinary Press is part of Inter-Disciplinary.Net – a global network

for research and publishing. The Inter-Disciplinary Press aims to promote and
encourage the kind of work which is collaborative, innovative, imaginative, and
which provides an exemplar for inter-disciplinary and multi-disciplinary
publishing.
All rights reserved. No part of this publication may be reproduced, stored in a

retrieval system, or transmitted in any form or by any means without the prior
permission of Inter-Disciplinary Press.
Inter-Disciplinary Press, Priory House, 149B Wroslyn Road, Freeland,

Oxfordshire. OX29 8HR, United Kingdom.
+44 (0)1993 882087
ISBN: 978-1-84888-150-1
First published in the United Kingdom in eBook format in 2013. First Edition.

Table of Contents
Preface
The Stories We Like to Tell vii
Section 1 The Traditional Stories
Chronic Illness Interpreted in ‘Inner Canon of Yellow

Emperor’: Why Is It Neglected? 3
Zhenyi Li
Sublime Illness: Friedrich Schiller’s Chronic Lung Disease

and the Concept of the Sublime 13
Carmen Bartl
Section 2 The Personal Stories
Mandated Motherhood: Biopsychosocial Aspects of Coping

with Infertility 25
Sara Rieder Bennett
Psychosocial Support in Multiple Sclerosis: The Confidant

Relationship Explored 39
Jane Grose, Jenny Freeman and Heather Skirton
Fear of a Living Death: A Foucauldian Discourse Analysis

of Chronicity, Terminal Illness and Euthanasia 49
Anna Ryan, Mandy Morgan and Antonia Lyons
Health and Illness Representations in Patients with

Rheumatic Disease 59
Céu Sá and Abílio Oliveira
Managing Multiple Chronic Illnesses: Narratives of Puerto

Rican Latinos Living in the U.S. 67
Louise Reagan
Section 3 The Visual and Virtual Stories
Children’s Experience of Living with Cancer 79

Ligia Lima and Marina Lemos

Conquering AIDS through Narrative: LongLife Positive
HIV Stories 89
Felicity Horne
Lifting the Lid of Pandora’s Box: Alzheimer’s Disease in

the Movies 103
Amir Cohen-Shalev and Esther-Lee Marcus
Passing Strange: Illness, Shame and Performance 111

Brenda Foley
Depression, Disgrace and Categorical Distinctions:

The Construction of a Stigma-Resistant Self in Published
Affective Disorder Narratives 119
Peta Cox
Section 4 The Caregivers’ Stories
Improvisation: Five Capacities for Coping with Trauma

and Loss in Chronic Illness 135
Patricia Fennell, John Esposito and Anne Fantauzzi
Does Social Support and Self-Esteem Determine

Depression in Chronically Ill Patients? 143
Zaeema Riaz, Riaz Ahmad and Sarwat Jahan Khanam
Illness or Impairment? Human Frailty as a Guiding Axis:

A Case Study Involving Young Cancer Sufferers in São
Paulo, Brazil 159
Tatiana Piccardi
Is the New Care Planning Approach to Long Term

Conditions Suitable for All Patients? The Case of Diabetes 167
Sally J. Giles and Penny Rhodes
General Practitioner Perceptions of Chronic Illness

Place People Somewhere between Health and Illness 177
Marjan Kljakovic

Preface: The Stories We Like to Tell

There is no such thing as just a story. A story is always charged
with meaning… And we can be sure that if we know a story well
enough to tell it, it carries meaning for us.
Robert Fulford 1
One powerful way to make sense of something is to tell and share stories of it.
The stories of chronic illness carry meanings for everyone with or without chronic
health conditions. These stories raise our awareness of diverse experiences,
interpretations, and treatment of chronic illness. Look at any civilisation: they are
never short of narrations on chronic illness. This is natural because chronic illness
is a crucial matter every community seeks to understand and to transfer the
meanings verbally so that an oral or written tradition can carry on the stories.
The stories are different across cultures due to different approaches we have
tried to make sense of chronic illness. The illness may be related to an evil curse in
one community, and to a virus in another. This is also natural because chronic
illness impacts our body, mind, and spirit. One interpretation cannot be sufficient
to explain our experience. Multiple stories are our efforts to figure out this world
and everything that takes place in it. They are all multidimensional and we do not
even know the limits to these dimensions. Much like the Hindu parable of the blind
men and the elephant, our individual and cultural perspectives bring about multiple
interpretations of chronic illness. Our multicultural communities and traditions,
fortunately, help us to preserve as many stories as possible to sketch this world
including chronic illness as closer as possible to the reality.
Unfortunately, one master story has been changing the whole landscape of our
civilizations. The master story starts to take over the other stories, eliminate
diversity, and form a monoculture interpretation of chronic illness. The master
story has been spread out at an unimaginable speed with support from our
globalising communication, education, medical and pharmaceutical industry. The
Internet has become the dominant channel for people to search for and exchange
information. The biomedical model is prevailing in medical and nursing schools.
Chronic illness across cultures now receives not only the standardised name for
each symptom, but also standardised treatment and medication. In short, there
becomes only one story told about chronic illness. There is only one way to make
sense of chronic illness.
This book, along with previous editions for papers presented in the Making
Sense of Health, Illness, and Disease (MSO: HID) conference series, aims to
embrace, archive, and preserve diverse meanings and stories of health, illness, and
disease before they vanish in our civilisations, and to initiate multidisciplinary and
multicultural conversations. This book, in particular, records dialogues on chronic

viii Preface
__________________________________________________________________
illness among the participants in the 10th Global Conference of MSO: HID that
took place in September, 2011 at Oxford University. Experts from six continents,
multiple disciplines, and diverse cultural backgrounds presented wonderful stories
on chronic illness in that conference. The conference was so fruitful and
constructive that the conference steering committee decided to continue with
another special conference on chronic illness in 2012. Therefore, the papers
selected in this book just start our journey to make sense of chronic illness through
multiple stories and perspectives.
As university faculty, we like to encourage our students to read academic
research papers as stories. So would we suggest here. The collection of chapters in
this book includes not only high quality academic research papers but also amazing
stories. There are emotional and physical experiences of personal or community
identity fluctuations caused by chronic illness that you may find more real than
those presented in a novel. There are also multiple ways to express chronic illness
experiences. This collection seeks to expand illness narratives to include
traditional, personal, visual and virtual, and caregivers’ perspectives. From a
traditional perspective, Zhenyi Li argues that the modern biomedical health care
system has banished diverse traditions in chronic illness interpretation. Carmen
Bartl finds that three hundred years ago Friedrich Schiller had already weaved his
chronic illness experiences into his writings. Stepping into the personal zone, Sara
Rieder Bennett explores the impact of individual and socio-cultural factors on
understanding the experiences of women with infertility. Jane Grose, Jenny
Freeman and Heather Skirton explore the confidant relationship to multiple
sclerosis patients in order to help both care receivers and providers. Anna Ryan,
Mandy Morgan and Antonia Lyons aim to understand how people make sense of
terminal illness and euthanasia by analysing their narration from a Foucauldian
perspective. Céu Sá and Abílio Oliveira suggest a closer link between health care
professionals and people with rheumatoid arthritis for deeper understanding of the
patients’ needs and feelings. Louise Reagan argues that both health care
professionals and patients need more time to understand the chronic illness. Stories
can be told with visual aids and online, too. Ligia Lima and Marina Lemos invite
children living with cancer to illustrate their experiences through drawings. Felicity
Horne also finds body maps are valuable ways for us to understand people with
chronic illness. Amir Cohen-Shalev and Esther-Lee Marcus compare mainstream
and non-mainstream Alzheimer’s films in their expression of illness narrative.
Brenda Foley finds there is a group of people who prefer passing their chronic
illness in public to avoid stigmatisation. Peta Cox analyses the autobiographies and
Internet postings by Australians with mental disorders and discovers the tension
between the advantages and limitations of the discursive writing strategies adopted
by them. In practice, Patricia Fennell, John Esposito and Anne Fantauzzi propose
five capacities as tools to help clinicians and their clients cull prior experiences for
better assessment of present circumstances and to create innovative ways to

Zhenyi Li and Sara Rieder Bennett ix
__________________________________________________________________
respond to change caused by chronic illness. Zaeema Riaz, Riaz Ahmad and Sarwat
Jahan Khanam emphasise social support for self-esteem of chronically ill patients.
Tatiana Piccardi suggests that the cure for chronic illness needs to be
individualized and to let the patients find their own way of exercising their
humanity with dignity. Similarly, Sally J. Giles and Penny Rhodes do not think
there could be a one-fits-all treatment approach for chronic illness after they
interviewed both professionals and patients using care planning for diabetes.
Marjan Kljakovic argues that it should be the lay people to decide whether they are
healthy or ill in chronic disease, but not the general practitioners.
Each of these authors present narratives informed by diverse disciplines,
cultures, and personal experiences in making meaning of chronic illness. These
stories are just a start, and we look forward to your participation.
Notes
1
Robert Fulford, The Triumph of Narrative (New York: Broadway, 2000).
Bibliography
Fulford, Robert. The Triumph of Narrative. New York: Broadway, 2000.

Section 1
The Traditional Stories

Chronic Illness Interpreted in ‘Inner Canon of Yellow
Emperor’: Why Is It Neglected?
Zhenyi Li
Abstract
Chronic illness is not new to any of the world’s culture. However, diverse
interpretations of and therapies for chronic illness are usually suppressed by
biomedical medicine. For example, the Chinese experience-based interpretation of
and therapies for chronic illness recorded in the classic ‘Inner Canon of Yellow
Emperor’ are depreciated by the prevailing evidence-based epistemology of current
health care theories and practices. This chapter points out that (a) chronic illness is
now narrowly believed to be a physical dysfunction and can only be cured with
biomedical intervention; (b) communicable and behavioural change prevention
approaches are subsequently marginalised; and (c) patterns and goals for cure and
rehabilitation that are alternative to aggressive biomedical intervention are
neglected. As a result, people tend to neglect physiotherapy, dietary rehabilitation,
emotional tuning, relationship harmonisation, and temperate exercise which were
emphasised in the ‘Inner Canon of Yellow Emperor’ as cure approaches for people
with chronic illness. Noticeably, most of these approaches require less financial,
governmental, and social services and investment. This can make one wonder what
could be behind the ‘war’ against chronic illness guided by the biomedical
interpretation, and who would be benefited from the ‘war’ propaganda? The fact
that diverse interpretations of chronic illness and their associated therapies have
been banished by biomedical medicine from health care systems in many countries
within the last century is arguably a conspiracy led by dominant pharmaceutical,
financial, governmental, social welfare, and health care institutions. However, such
a bias seriously impacts at least four aspects related to chronic illness: (1)
communication between care givers and receivers; (2) the relationship between
illness interpretation and culture; (3) core values related to health care; and (4)
choices in every person’s life.
Key Words: Chronic illness, interpretation, Inner Canon of Yellow Emperor,

health communication, medical sociology.
*****
1. Chronic Illness: Multiple Ways to Interpret

Let each individual interpret and even define his or her bodily experiences,
including chronic illness. Does this notion make sense to you? Even so, it may not
be popular in today’s society. Life is separated from illness in this society. People
let professionals to interpret their illness. In other words, we may be responsible
for our chronic illness, but not authorised to interpret or define it.

4 Chronic Illness Interpreted in ‘Inner Canon of Yellow Emperor’
__________________________________________________________________
Nevertheless, our ancestors documented concepts, interpretations, and lifestyles
that resonate with this notion. For example, ‘Inner Canon of Yellow Emperor,’ a
classic health care book in Chinese, records not only the way how ‘Yellow
Emperor,’ a pseudonym of a group of scholars, interprets health and illness, but
also the rationale for their interpretation.
The motivation to write down this book, ‘Yellow Emperor’ explains, is to ‘let
each ordinary person to interpret illness and reach harmony.’ 1 In the book, ‘Yellow
Emperor’ says that health and illness co-exist and they need to be balanced. 2
Illness is neither possible nor necessary to eliminate. 3 Chronic illness leads to a
lifestyle modification; and one cannot return to the life before getting ill even after
the illness is balanced. 4
Are not these statements incredibly valuable for us to review, particularly in
today’s world where dominant interpretation on chronic illness hardly leaves any
space for a different voice? Is it not nice to return the authority of illness
interpretation back to ‘ordinary people’? Therefore, the goal of this chapter is to
compare selected statements from ‘Inner Canon of Yellow Emperor’ with
prevailing practice in western society on chronic illness to make a clear
argumentation that it is crucial to acknowledge the reality and necessity of the co-
existence of multiple interpretations of chronic illness.
‘Inner Canon of Yellow Emperor’ and its interpretation on chronic illness are
used here only to exemplify diverse voices on chronic illness. I have neither
intention nor ability to introduce, explain, or translate each chapter of ‘Inner Canon
of Yellow Emperor’ in this chapter. The book has 162 chapters. It was translated
into English as well as many other languages. It covers topics from philosophy,
health, lifestyle, illness, cure, acupuncture, and medicine. I will only address
viewpoints on chronic illness from five particular chapters: 1, 6, 127, 130 and 147
in this chapter. Furthermore, this chapter aims to discuss the reality and necessity
of the co-existence of multiple interpretations of chronic illness. Any extensive
promotion on a single voice ironically counters the purpose of this chapter.
I choose chronic illness as the focus in this chapter for three reasons. First,
chronic illness has reached epidemic proportions in poor as well as rich countries,
in the past as well as now. Chronic illness is permeating world cultures at an
unprecedented rate. 5 In other words, chronic illness is not limited to certain
cultures, countries, eras, or socio-economical classes. It is affecting everyone in the
world, directly or indirectly. Therefore, chronic illness must have been interpreted
in many ways by many people differently or similarly. It is an ideal representative
for scholars to examine and compare how our bodily experiences such as chronic
illness are interpreted across national, cultural, political, economical, and other
boundaries.
Another reason of focusing on chronic illness is that these conditions are often
related to life-style, individually and/or collectively. Smoking, for example, is
often viewed as a cause for chronic illness including heart disease, high blood

Zhenyi Li 5
__________________________________________________________________
pressure, and cancer. But smoking as a choice of life style can be argued as
common as coffee drinking, which also brings biochemical changes to a body. In
some communities, exchanging cigarettes is part of business protocol to establish
trust and closer interpersonal relationship. Hence, convincing these people to alter
their smoking life-style for the sake of chronic illness prevention is obviously hard
to achieve. It is different from promoting hand washing to prevent epidemic
diseases like flu, which is also a life-style change but is easy for many
communities to make. In many cultures, a person who leads a sedentary life is not
viewed as vulnerable to chronic illness because these people value and respect jobs
requiring less active physical motions. In short, chronic illness is more personal,
cultural, and life-style related than epidemic diseases. This again makes chronic
illness an ideal representative for medical sociology studies.
The third reason is related to current development in medical sociology studies.
Also known as sociology of health and illness in UK and Australia, medical
sociology are scholarly inquiries on the socio-cultural dimensions of medicine,
health, illness, and disease. 6 Chronic illness, a bodily experience, according to
medical sociologist Deborah Lupton, can be interpreted from at least three different
perspectives: functionalist, political economy, and social constructionist. 7 ‘Inner
Canon of Yellow Emperor’ presents the fourth perspective: dynamic co-existence,
which is worth comparing with those three mentioned above.
2. Chronic Illness: Dynamic Co-Existence Interpretation

In general, external coldness is believed to the cause of illness in ‘Inner Canon
of Yellow Emperor.’ If the coldness stays in the body, it ‘forms chronic illness.’ 8
‘Yellow Emperor’ conceptualises all sorts of chronic illness as dynamic co-
existence of a body and the coldness inhabited in the body. The only difference is
the location where the coldness resides: skin, muscle, abdomen, bone, or other
places in a body. The coldness stays there and refuses to leave. That is why chronic
illness is a permanent experience that a person has to consider a harmonious co-
existence with that long-term residing coldness.
A dynamic co-existence is inspired by observing the nature around us. 9
Nothing will disappear in this world. We do not see them just because they
transform into another existence or move to another place. Therefore, good or bad,
preferred or hated, have or have not, all of these are interrelated, interdependent,
and interchangeable like ‘yin’ and ‘yang.’ A wise person knows how to balance
‘yin’ and ‘yang.’ Illness occurs when the harmonious co-existence loses the
balance.
However, at each stage of chronic illness, the balance could be restored; the
same as nature achieves harmony every time after disorder. 10 Medication and
acupuncture are necessary interventions though not the ultimate cure. They help a
person to reach new balance of co-existence. They do not and cannot get rid of the

__________________________________________________________________
illness. It is the law of nature. And applying medication and acupuncture shall obey
this law.
Like a tree after storm, the broken branch cannot be added back. A person with
chronic illness cannot return to his or her previous condition. 11 Instead, the scar of
the broken branch will ‘stay’ there for a long time, so as the chronic illness in a
body. The tree, however, achieves new balance after the storm. People can do the
same with their chronic illness because it is the law of nature.
Caregivers need to respect this law of nature. 12 Caregivers may or may not
have profound knowledge in medicine. However, they need to respect the law of
nature by observing the external and internal environment that person with chronic
illness resides. They shall not disturb the co-existence of ‘yin’ and ‘yang.’ They
can only help the person with chronic illness to pursue new balance. There has not
been any success by altering the law of nature.
3. Comparison with Other Ways of Interpretation

The dynamic co-existence interpretation by ‘Inner Canon of Yellow Emperor’
is different from the three western medical sociology perspectives: functionalist,
political economy, and social constructionist. A comparison can help us to figure
out why this interpretation is neglected as well as what we can learn from it.
Chronic illness is usually regarded as a social burden or even stigmatised as a
personal shame in today’s western societies. 13 This is a typical discourse from
functionalistic perspective. People with illness are supposed to be less productive
than ‘healthy’ social members. Therefore, this deviance has to be fixed as soon as
possible, no matter if chronic illness is possible to be ‘fixed’ in a short period of
time or can be cured at all.
From political economy perspective, chronic illness is profitable to the
privileged group who leads all members in the society to focus on using drugs and
medical technology to treat it. 14 Powerful pharmaceutical and other medical
institutes are viewed as social control agencies executing moral punishment to the
disadvantaged in lower socio-economical class.
Social constructionist medical sociologists are followers of Foucault and
Derrida’s post-modern/post-structuralist studies. They view chronic illness as the
inevitable product of social relations and subject to change. As socio-cultural
constructed phenomena, chronic illness can be interpreted in many ways. In their
eyes, the biomedical approach is grounded on the cultural assumption prevailing in
modern western societies since the Enlightenment Movement. In other words, the
power of medicine has gradually convinced almost every member in western
societies. 15
A major difference from functionalist perspective is that ‘Inner Canon of
Yellow Emperor’ never stigmatises chronic illness. It is not regarded as a shame or
punishment to a person. The external coldness is sometimes called ‘evil air.’
However, ‘Inner Canon of Yellow Emperor’ says that evil air is part of the world.

Zhenyi Li 7
__________________________________________________________________
It cannot be eliminated. A person feels ill when the evil air is not positioned
correctly in the body. Once it is re-located by adjustment and re-balancing, the
person feels better. 16 This interpretation does not marginalise or stigmatise the
person with chronic illness. Instead, the motivation of ‘Yellow Emperor’ to write
this book is to disseminate such notions for an inclusive and harmonious world. 17
Seeing through political economy lens, it is interesting to observe that the
pseudonym ‘Yellow Emperor,’ which refers to the first emperor of China, does not
carry any ‘political’ discrimination against his subjects in this ‘Inner Canon.’ This
certainly indicates that the authors of this book were not the privileged or viewed
themselves as the privileged. This book has been freely circulated in China for
centuries. It has not been owned, patented, or controlled by a college, association,
or government. Many therapies and herb medicine recorded in the book hardly cost
anything. There is no evident economical motivation. ‘Yellow Emperor’ suggests
that health care is a practice every ordinary person needs to know. 18 The ownership
for interpretation on chronic illness belongs to each ordinary person. How different
it is from increasing professionalisation of health care in modern western societies!
‘Yellow Emperor’ could have agreed with social constructionists on the
inevitability of chronic illness if they met. However, ‘Yellow Emperor’ would
have been disappointed when seeing biomedical approach is another inevitability
that social constructionists are inclined to illustrate. ‘Yellow Emperor’ has the
passion to bring people back to the law of nature by observing the nature such as a
tree after storm. 19 In the ‘Inner Canon’ there are dozens of passages on philosophy
of life, dietary rehabilitation, emotional tuning, relationship harmonisation, and
temperate exercise. Social constructionists seem to have narrower scope and
limited interest and tend to attribute everything to socio-cultural construction.
Last, the notion of dynamic co-existence is not seen in any of these three
perspectives. It is understandable because many Western interpretations are based
on an ‘either-or’ linear logic, while some Eastern ways present a ‘both-and’
mindset. 20 Illness does not have to disappear. The disadvantaged need the
privileged. Multiple interpretations can co-exist. These statements can look weird
to one culture, but acceptable to another. A typical example is western biomedical
practices were not resisted but co-existed in China and many other Asian countries
while Asian therapies and medicine hardly have any space to exist in many
European and North American countries. It is not a question of tolerance. It is
simply the difference between mindsets. The game of ‘Go,’ originally from China,
emphasises co-existence. A skilful player is able to maximise co-existence with the
opponent. The extinguishing of opponent means the end of interdependence
between ‘yin’ and ‘yang,’ the same philosophy as ‘Inner Canon of Yellow
Emperor’ presents on chronic illness. A Western chess player, on the contrary,
aims to checkmate. The ultimate cure is supposed to be a complete removal of the
cancer, an elimination of HIV, or a return to normal level of blood sugar. In fact,
the three medical sociological perspectives do not co-exist, either. 21

__________________________________________________________________
4. Why Neglected?
Besides the intolerance of multiple interpretations in a one-track mind, there are
other reasons for the neglect of ‘Inner Canon of Yellow Emperor.’ An exploration
of these reasons can also help us to recognise a possible conspiracy behind
biomedical interpretation of chronic illness.
First, if ‘Inner Canon of Yellow Emperor’ were recognised, people could have
awakened to the ownership of chronic illness interpretation and started to re-
connect life and illness. Both ownership and the interconnection between life and
illness have been taken away by highly professionalised biomedical oligopoly. A
person could have difficulties to find proper vocabulary to name his or her illness
and to describe the feeling in the oligopoly. 22 It is not exaggeration that many of us
are aphasiac in front of biomedical professionals when they name chronic illness
more and more complicated and abstract. ‘Inner Canon of Yellow Emperor,’ on the
contrary, provides lay language vocabulary for chronic illness and advocates
individual ownership of illness interpretation.
Second, therapy and cure based on dynamic co-existence do not cost as much
as present biomedical approach on both financial and social resources. On one
hand, this might mean a loss of business or profit for pharmaceutical and other
medical institutes. On the other hand, government or private insurance may not like
losing revenue from biomedical practices either. However, ‘Inner Canon of Yellow
Emperor’ has been practiced over 2,000 years in China. It has not required or relied
on public or private investment as biomedical approach does. Would it not be
shocking when a person with chronic illness becomes aware that it costs and needs
much less resources for the same, if not better, result?
Third, if ‘Inner Canon of Yellow Emperor’ were recognised, it could have
brought changes in our personal and social life. As mentioned earlier, the
relationship between illness interpretation and culture could have been changed.
Subsequently, the communication between physicians and patients would be
different. They should be renamed as care givers and receivers. The givers need to
respect the authority on chronic illness of the receivers. The givers, at the same
time, do not need to be physicians. That also means there are more care givers than
we have now. In addition, people with chronic illness have more choices due to the
dynamic co-existence mindset. For example, a person with cancer does not have to
fight the ‘war’ by attending side-effect loaded chemotherapy. These changes will
carry out the fundamental change in core values related to health care.
5. Conclusion
It is too early to laugh because the neglect of ‘Inner Canon of Yellow Emperor’
is far beyond resolved at this moment. Like stated earlier, a one-track mind can
hardly accept anything originated from a culture embracing co-existence. Even
ordinary people in the western society, being so used to biomedical treatment, have

Zhenyi Li 9
__________________________________________________________________
negative attitudes or reactions towards ‘weird’ therapies including Chinese
medicine: fear, scepticism, and resistance. 23
At the same time, we shall notice that ‘Inner Canon of Yellow Emperor,’ along
with many other health care thoughts and practices, is often misinterpreted as
holistic therapy. This is risky. From a review on the history of ‘standardising’
‘complementary / alternative medicine’ (CAM), one can see clearly the CAM has
been interpreted in biomedical approach, no matter how different they are. 24
Therefore, Darwin warns us that the biomedicalised CAM may no longer be
authentic. 25
Last, at the birthplace of ‘Inner Canon of Yellow Emperor’ - China, we observe
a decline of traditional Chinese medicine and a possible oligopoly of modern
western biomedicine. It is very possible that ‘Inner Canon of Yellow Emperor’ is
forgotten by the Chinese before it is recognised in the West.
In sum, the neglected ‘Inner Canon of Yellow Emperor’ illustrates the
extinguishing of socio-cultural diversity in the health care eco-system, which could
sadly be a chronic illness in our life.
Notes
1
There are many different translations of ‘Inner Canon of Yellow Emperor.’ This
chapter chooses not to refer any particular publication for verses quoted here. All
translation is done by the author from original Chinese version. This quotation is
from Chapter 130, Verse 2.
2
Chapter 1:3.
3
Chapter 127:1.
4
Chapter 127:3.
5
Nancy Waxler-Morrison, ‘Introduction’, in Cross-cultural Caring: A Handbook
for Health Professionals in Western Canada, eds. Nancy Waxler-Morrison, Joan
Anderson and Elizabeth Richardson (Vancouver, BC: UBC Press, 1990), 6.
6
Deborah Lupton, Medicine as Culture: Illness, Disease and the Body in Western
Societies (London, UK: SAGE, 2003), 2.
7
Ibid., 7-12.
8
Chapter 147:7-10.
9
Chapter 6.
10
Chapter 147:25.
11
Chapter 127.
12
Chapter 130.
13
Lupton, Medicine as Culture: Illness, Disease and the Body in Western Societies,
7.
14
Ibid., 10.
15
Ibid., 12.

__________________________________________________________________
16
Chapter 6.
17
Chapter 130.
18
Chapter 1.
19
Chapter 137.
20
Edward T. Hall, Beyond Culture (New York: Anchor Books, 1977), 9.
21
Lupton, Medicine as Culture: Illness, Disease and the Body in Western Societies,
12.
22
Ibid., 60.
23
Patricia Geist-Martin, Barbara Sharf and Natalie Jeha, ‘Communicating Healing
Holistically’, in Emerging Perspectives in Health Communication: Meaning,
Culture, and Power, eds. Heather M. Zoller and Mohan J. Dutta (New York:
Routledge, 2008), 100-103.
24
Ibid., 87-90.
25
Thomas J. Darwin, ‘Intelligent Cells and the Body as Conversation: The
Democratic Rhetoric of Mindbody Medicine’, Argumentation & Advocacy 36
(1999): 35-49.
Bibliography
Darwin, Thomas J. ‘Intelligent Cells and the Body as Conversation: The
Democratic Rhetoric of Mindbody Medicine’. Argumentation & Advocacy 36
(1999): 25–49.
Geist-Martin, Patricia, Barbara Sharf, and Natalie Jeha. ‘Communicating Healing

Holistically’. In Emerging Perspectives in Health Communication: Meaning,
Culture, and Power, edited by Heather M. Zoller, and Mohan J. Dutta, 85–112.
New York: Routledge, 2008.
Hall, Edward T. Beyond Culture. New York: Anchor Books, 1976.
Lupton, Deborah. Medicine as Culture: Illness, Disease and Body in Western

Societies. London, UK: SAGE, 2003.
Waxler-Morrison, Nancy. ‘Introduction’. In Cross-Cultural Caring: A Handbook

for Health Professionals in Western Canada, edited by Nancy Waxler-Morrison,
Joan Anderson, and Elizabeth Richardson, 3–10. Vancouver, BC: UBC Press,
1990.

Zhenyi Li 11
__________________________________________________________________
Zhenyi Li, PhD, is an Associate Professor teaching Intercultural Communication

at Royal Roads University in Victoria, Canada. His research focus is on
intercultural health communication.

Sublime Illness: Friedrich Schiller’s Chronic Lung Disease and
the Concept of the Sublime
Carmen Bartl
Abstract
In 1791, at the age of 32, the famous German writer, Friedrich Schiller contracted
tuberculosis. He was plagued by a chronic pulmonary disorder for the rest of his
life. It is in that time and under the sign of chronic suffering - until his death in
1805 - that Schiller produced some of his major theoretical works. This chapter
analyses the philosophical and literary mappings of Schiller’s lung disease in the
writer’s personal letters. More importantly, it argues that the experience of his
chronic illness has influenced the development of Schiller’s theory of the sublime
as exposed in his essays on the sublime, of 1793 and 1801.The chapter is
concerned less with the direct manifestations of the illness, and more with the way
in which Schiller weaves the bodily experience of his chronic suffering into the
body of his philosophy; with the way literature and philosophical thinking is
transformed by, or imprinted with the pattern of the disease in question. For
Schiller, as in the case of other thinkers who developed their main ideas while
suffering from chronic illnesses (like Friedrich Nietzsche or Immanuel Kant),
philosophy is also a somatic affair and writing means implicitly writing the illness,
even when the text is not openly pathographical. Lying at the very intersection
between bodily experience and its intellectual, philosophical and literary
processing, his lung disease influenced the way Schiller shaped his characteristic
philosophy, which thus bears the mark of a particular bodily experience.
Key Words: Friedrich Schiller, sublime, sublimation, philosophy, pathography,

illness, representations of illness.
*****
1. The Writer and His Illness

Friedrich Schiller, the famous German poet and philosopher and peer of
Goethe, was plagued for the last 15 years of his life by what was believed to be a
chronic infection of the lungs. The experience of living with this disease has had a
notable influence on his writing and thought during that time, particularly - as I
argue - on the development of his philosophy of the sublime.
In May 1805, when the philosopher died of an acute bout of his multifaceted
illness, the autopsy recorded the finding of an ‘inflamed, porridge-like and totally
disorganised’ lung, a heart ‘without muscular substance,’ the gallbladder and
spleen ‘unnaturally enlarged,’ the kidneys ‘dissolved in substance and completely
grown together.’ Doctor Huschke, one of the doctors in whose care he had been,

14 Sublime Illness
__________________________________________________________________
added to those findings his personal comment: ‘In these circumstances one has to
wonder how the poor man was able to live for so long.’ 1
Yet Schiller did live not only long, but also intensely. From the onset of his
illness in 1791, at the age of 32, Schiller managed to lead an extremely active
intellectual life, as well as a constant social life. In this time span, his wife
Charlotte gave birth to four children; social gatherings at their house were part of
the weekly routine; the writer himself had to keep in touch with his editors, his
noble sponsors, as well as his peers from the German literary world by writing
thousands of pages of letters; and yet for all the distraction that comes with having
a large family and being an active member of bourgeois society, it is in these 15
years that Schiller produces his most important literary works, as well as his crucial
philosophical writings. He works, nevertheless, under the sign of his on-and-off
illness; he is conditioned in the efficiency and productivity of his work by the bouts
of the illness, which occur at least once in a couple months and last sometimes for
only several days, and sometimes for weeks at a time. As I will argue, the writer is
influenced by the experience of his illness also to some extent in the content of his
philosophy: namely in his developing of the concept of the sublime.
As to what his illness exactly was, I should point out that due in part to
limitations to 18th century medical diagnostication, it is typically very difficult to
provide a diagnosis in today’s terms solely from the data that can be extracted from
Schiller’s own account, as well as the accounts provided by his friends and even
doctors. There are, however, two diagnosis attempts available in secondary
literature. 2 First, one presupposes a progressive tuberculosis affecting the lungs
and bowels, which started with a primary infection during his school years, and
which ultimately led to his death. Second, one presupposes a pneumonia that
started 1791 with an abscess, relapsing pneumonia bouts and a perforation of the
diaphragm with pneumonia entering gastric space and causing colic-like narrowing
of the bowels.
Researchers suggest that whatever he is presumed to have had could have been
healed with an antiviral prescription today. 3 But in the absence of antibiotics at the
time, Schiller had to cope with his chronic infection until his death.
In spite of the weakness caused by suffering, he writes sometimes several
letters a day to his editors, friends and family; other times, however, a few weeks
go without any sign from him. In his letters, one can find repeated references to his
recurring illness: ‘Headaches and toothaches, which have been plaguing me for
several days, have bereft me of any disposition for a judgment on poetic works;’ 4
‘For the last 14 days my cramps have been plaguing me so badly that I could not
set a single feather on paper;’ 5 ‘Also I have suffered a lot again in the past 3 weeks
from my illness, which has kept me from writing back.’ 6 Being modestly
documented, and mostly in connection with work, the illness appears to have been
something the author was rather embarrassed to admit. Schiller does not hide his
illness, but he constantly refuses to dwell on it. A single mention like ‘I have not

Carmen Bartl 15
__________________________________________________________________
been well’ would mostly be followed by a five page letter about other issues. The
accounts of momentary crises (which usually last several weeks) are remarkably
similar, if not in content then in form.
In the beginning of this week I have been down with a bad case
of vomit and diarrhoea and I was very afraid I might become
seriously ill. … In any case this has messed up my head for the
entire week, and caused a halt in my activity, which is
interrupted so often anyway. 7
I have been set back in my work again by almost 10 days by a

throat pain that circulated in my household … If only I had 10
weeks of uninterrupted health, it [“Wallenstein”] would be
ready… 8
The illness does not have the right to a face of its own. It is only being painted with
a view to justifying not having written back in a long time, or not having had the
ability to work. Often it is the catarrh and the cough that is plaguing him; other
times back pain and / or fever, or gastrointestinal issues, or all of those together.
Whatever the symptoms are, the most important thing about them for Schiller
seems to be that they all keep him from work.
Moreover, Schiller is also surrounded by others’ suffering. Most members of
his family are as prone to illness as he is. In his letters he recounts not only the
different bouts and symptoms of his own illness, but also of his children, his
siblings, his parents and his wife. Charlotte goes through her four pregnancies
suffering from cramps and pains; after the birth of one of the daughters, she
succumbs to a fever which makes Schiller think he will lose her. The children are
often sick as well. Viral infections, when they come, hit his whole household,
making it difficult for him to indulge in describing his own suffering. He once even
calls his home a ‘Lazarett’, a military hospital. 9 Perhaps also due to such
circumstances, he is very cautious and lapidary when sharing details about his own
illness in his letters. Almost every time he mentions being or having been ill, he
feels compelled to add the piece of information about how that particular bout of
illness impacted his ability to work. The stronger the illness, the more unable he is
to perform his work. The body is his enemy, as Schiller has to learn to live with it
while continuing to produce extraordinary works.
Indeed, in his thirties, we find Schiller as an established writer. He may not be
very rich, but numerous sources provide him with the ability to support an ever-
growing family; among these sources is also his own writing - in a time when, as
always, being a writer did not count among the profitable professions.
Schiller was aware of his rank as a writer. He was sure he would be read after a
few centuries, and he was also able to tell with astounding accuracy who else -

16 Sublime Illness
__________________________________________________________________
from among his contemporaries and friends - would still be read and who would
not. He was aware that he had been given a genius which he had to express, and at
the same time he was aware of his limited resources of time and energy to do so -
resources that were being greatly diminished by his constant proneness to falling
ill. When, in 1801, he writes to Cotta, one of his editors: ‘The best and the
accomplished works require leisure, and I can only do so much given my changing
state of health. One single significant new work is all I can deliver in one year…’ 10
the writer means, however, one dramatic work. His theoretical writings are
considered as ‘happening’ on the side of his poetry and dramaturgy.
2. The Sublime
It is around this time that the author develops his theory of the sublime, and it is
my opinion that in the structure of Schiller’s experience of the sublime we may
recognise the contours of his struggle with illness.
Already in Antiquity, the sublime was understood as a force of nature that
cannot be held in check by man, and to which man can only be a bystander, a
viewer, or a powerless, overwhelmed subject. 11 Any human intervention or attempt
to fight it would have been doomed to failure: as in the case of a great storm at sea,
an erupting volcano, an earthquake or an avalanche. From Antiquity onwards
though, the concept of the sublime has undergone a couple significant changes.
The first most notable step was performed by the German Enlightenment
philosopher Immanuel Kant, who lends a new dimension to the concept of the
sublime. Man is firstly impressed and daunted by nature; but then, says Kant, man
can rise above the given force of nature by affirming his spiritual superiority. This
moment of affirmation becomes the most important one in the dynamics of the
experience of the sublime.
In this form, the concept is inherited by Friedrich Schiller, who makes it into a
main concept of his aesthetic theory. Schiller writes in a Kantian vein that the
sublime is the effect of three consecutive things: 1) an objective physical power; 2)
our own subjective physical powerlessness; 3) our own subjective moral
empowerment or superpower. 12 What for Kant had been valid in the realm of
ethics and even of metaphysics of morals, will be carried over by Schiller into the
field of his theory of art. But it will also define a pattern for concrete mental action
to be performed in an endangering situation, for instance, in coping with his own
chronic illness by him.
But how was Schiller able to use a mental pattern drawn from theoretical
philosophy and apply it in his own personal experience? And how did his personal
experience in turn enrich his philosophy?
In spite of recurring bouts of fever, Schiller did not locate his illness within
himself. He did hold the belief that he had a proneness to fall ill, but every time
this happened, it seemed to him to have another cause. Significantly, all causes
were perceived as coming from outside: the current epidemic, the cold, the

Carmen Bartl 17
__________________________________________________________________
weather. Especially the weather, as a metaphoric messenger of nature, since the
weather - winds, the draught, the cold, the heat - constitutes that part of nature and
its coercive aspect (the induced cold and cough) that has permeated the
philosopher’s body and is acting inside of it. Thus Schiller very often blames
worsening of his state of health on the weather: ‘The sultry heat of last week has
affected me greatly, and perhaps a cold has also contributed to the fact that for the
last 8 days I have been feeling ill, have had fever and have been afraid of a serious
illness to come;’ 13 to his friend Goethe he confesses: ‘The bad weather we are
having now is afflicting me greatly, and I have lost several days of work again to
the cramps and insomnia;’ 14 or, also to Goethe, on a more positive note: ‘What
with the better weather, I am also feeling better and more active… .’ 15
This trope is not an accidental choice for his explanations. The weather is one
of the most typical ways in which nature, in the sense of physical natural
phenomena, makes itself manifest. Storms, avalanches, thunderstorms - elements
that are at home in Schiller’s descriptions of the sublime - are all weather-related
phenomena. And so it is a part or a hypostasis of this power of nature that Schiller
imagines to be fighting - only within his body. Thus his art, his literary texts which
he produces in the brief pauses between one bout of illness and the other, are at the
same time sublime acts, where his mind shows itself to be free from the coercion of
the natural phenomena that illness constitutes.
It becomes now apparent how come he does not need to dwell on descriptions
of the illness itself: the image of the illness returns in his philosophy, as a shadow,
as an already defeated shadow in the experience of the sublime. The sublime thus
gives a negative measure, a measure of absence of Schiller’s illness. The ‘enemy’
is invisible, but the enemy leaves an indent in his work, the contours of which can
hardly be mistaken.
3. The Freedom
Does Schiller, however, believe that his illness is really defeated when turned
into its shadow, when made invisible?
It is worth noticing that the sublime as a concept has never indicated - neither in
Antiquity nor with Kant or Schiller - that one has actually harnessed or gotten a
grip on the rampant forces of nature. The rise is only the result of a freedom ‘in
spirit,’ which in practice means having become indifferent to these unleashed
forces, not being emotionally steered by the fear of them anymore, not being
controlled by them in one’s own decisions and actions. Schiller’s concept of
freedom of the spirit or of reason, vis-a-vis nature, means that the motivation and
drive for one’s own actions is to be found not outside of oneself, that is, not outside
of one’s own spirit, but within one’s own spirit. By rising above nature, thanks to
reason, one takes the decisions for one’s own actions into one’s own hands. The
struggle for Schiller, then, must be not about defeating the illness - but about rising
above being conditioned by it. As long as Schiller still manages to perform his

18 Sublime Illness
__________________________________________________________________
work, the agency of his own ‘spirit’ is rescued from the subjection to nature. This
thought is already to be found in his essay ‘On the Sublime,’ where Schiller writes:
‘Great is he who overcomes the terrible. Sublime is he who, even when defeated,
will not let himself be terrified by it.’ 16
As Georg Braungart has argued, 17 it seems that both Kant and Schiller wished
to uphold an anthropological perspective facing the growing threat that was
coming from the fast-developing field of natural sciences like geology: the threat
of man becoming a minuscule being devoid of importance and dignity, in a vast,
infinite space. In a time when it was becoming clear how old the Earth really is and
how infinite the space, philosophers like Kant and Schiller attempted to provide
mankind - and specifically, the human individual - with one last unalienable
advantage: the advantage of freedom gained through reason.
The nature from which we human beings had to make ourselves free was for
Kant rather physical nature in her most violent manifestations, such as the
philosopher himself had experienced them, in the series of earthquakes that
shattered the city of Lisbon and a large part of Europe in 1755. 18 Schiller, in turn,
applied Kant’s method to individual processes of decision-making and action while
living under the siege of illness.
It can arguably be said that it is via Schiller that ultimately Sigmund Freud is
receiving the concept of sublimation, developing his own psychoanalytical theory
on it. Sublimation - with Freud - essentially means making use of an excess energy,
by assigning this energy a goal: for instance, the creation of a work of art. If
sublimation fails, that excess energy contaminates the patient, producing neurosis.
Schiller even literally calls one of his works a sublimation, when writing to his
friend Goethe: ‘Shall I, too, this year be bestowed with the joy of sublimating the
best of my nature in a work, as you have done with your own nature.’ 19 Thus
Schiller, who wanted to rise above the conditioning of his own body which was
prone to falling ill, proves to be Freud’s literary predecessor, providing the
template for Freud’s later theory of neurosis and sublimation.
For Schiller, who was no naïve believer in shadows of his own making, the
experience of the sublime and the rising above bodily conditions remains an ideal.
Though it has to be strived for, it will rarely - if ever - be realised fully. Schiller
writes about one of his poems: ‘This poem is little more than a natural sound...and
a voice of pain...It is the true image of human life, the Rhine river disappearing in
the sand because of suffering.’ 20 Around the same time when he wrote this poem,
in 1794, he mentions in a letter to Goethe:
I will hardly have the time to complete in myself a great and

general revolution of the spirit; but I will do the best I can, and
when finally the building collapses, perhaps I will have rescued
from the fire what is worth rescuing. 21

Carmen Bartl 19
__________________________________________________________________
Like the Rhine River from the poem, Schiller the man will also ultimately
dissipate. But by the time this happens, his statement of 1794 will have become, I
believe, an accurate description of what he strove for and achieved: ‘I will do the
best I can, and when finally the building collapses, perhaps I will have rescued
from the fire what is worth rescuing.’
Notes
1
Rüdiger Safranski, Friedrich Schiller oder Die Erfindung des Deutschen
Idealismus (München: Carl Hanser, 2004), 11.
2
Dietrich von Engelhardt, ‘Schillers Leben mit der Krankheit im Kontext der
Pathologie und Therapie um 1800’, in Zeitschrift für Ästhetik und Allgemeine
Kunstwissenschaft, 6th special edition: Schillers Natur. Leben, Denken und
literarisches Schaffen, eds. Georg Braungart and Bernhard Greiner (Hamburg:
Felix Meiner, 2005), 62.
3
Ibid.
4
Friedrich Schiller, Werke und Briefe in zwölf Bänden, Vol. 12: Briefe II: 1795-
1805, ed. Norbert Oellers (Frankfurt am Main: Deutscher Klassiker Verlag, 2002),
11.
5
Ibid., 28-29.
6
Ibid., 48.
7
Ibid., 353.
8
Ibid., 369.
9
Ibid., 218, 314, 369, 622, 630 and 693.
10
Ibid., 581.
11
For instance by Pseudo-Longinus (approx. 40 BC.) See also Dietmar Till, Das
Doppelte Erhabene: Eine Argumentationsfigur von der Antike bis zum Beginn des
19. Jahrhunderts (Tübingen, 2006).
12
Friedrich Schiller, ‘Vom Erhabenen’, in Schillers Werke. Nationalausgabe.
Zwanzigster Band: Philosophische Schriften. Erster Teil, ed. Benno von Wiese
(Weimar: Hermann Böhlaus Nachfolger, 1962), 186.
13
Schiller, Briefe II, 305.
14
Ibid., 432.
15
Ibid., 401.
16
Schiller, ‘Vom Erhabenen’, 185.
17
Georg Braungart, ‘Die Geologie und das Erhabene’, in Zeitschrift für Ästhetik
und Allgemeine Kunstwissenschaft, 6th special edition: Schillers Natur. Leben,
Denken und Literarisches Schaffen, eds. Georg Braungart and Bernhard Greiner
(Hamburg: Felix Meiner, 2005), 176.
18
Ibid., 162.
19
Schiller, Briefe II, 358.

20 Sublime Illness
__________________________________________________________________
20
Ibid., 53-54.
21
Friedrich Schiller, Letter no. 339 to Goethe, August 31st, 1794, in Werke und
Briefe in Zwölf Bänden, Vol. 11: Briefe I: 1772-1795, ed. by Georg Kurscheidt
(Frankfurt am Main: Deutscher Klassiker Verlag, 2002).
Bibliography
Bethge, Wolfgang. Das Energische Prinzip. Ein Schlüsselbegriff im Denken
Friedrich Schillers. Heidelberg: Universitaetsverlag C. Winter, 1995.
Braungart, Georg. ‘Die Geologie und das Erhabene’. In Zeitschrift für Ästhetik und
Allgemeine Kunstwissenschaft. 6th Special Edition: Schillers Natur. Leben, Denken
und literarisches Schaffen, edited by Georg Braungart, and Bernhard Greiner, 157–
176. Hamburg: Felix Meiner, 2005.
Engelhardt, Dietrich. ‘Schillers Leben mit der Krankheit im Kontext der Pathologie
und Therapie um 1800’. In Zeitschrift für Ästhetik und Allgemeine
Kunstwissenschaft. 6th Special Edition: Schillers Natur. Leben, Denken und
literarisches Schaffen, edited by Georg Braungart, and Bernhard Greiner, 57–74.
Hamburg: Felix Meiner, 2005.
Riedel, Wolfgang. Die Anthropologie des Jungen Schiller - Zur Ideengeschichte

der Medizinischen Schriften und der ‘Philosophischen Briefe’. Würzburg, 1985.
Safranski, Rüdiger. Friedrich Schiller oder Die Erfindung des Deutschen

Idealismus. München and Wien: Carl Hanser, 2004.
Schiller, Friedrich. ‘Vom Erhabenen’. In Schillers Werke. Nationalausgabe.

Zwanzigster Band: Philosophische Schriften. Erster Teil, edited by Benno von
Wiese, 171–195. Weimar: Hermann Böhlaus Nachfolger, 1962.
—––. Werke und Briefe in Zwölf Bänden, Vol. 11: Briefe I: 1772-1795, edited by
Georg Kurscheidt. Frankfurt am Main: Deutscher Klassiker Verlag, 2002.
—––. Werke und Briefe in Zwölf Bänden, Vol. 12: Briefe II: 1795-1805, edited by
Norbert Oellers. Frankfurt am Main: Deutscher Klassiker Verlag, 2002.
Stockinger, Ludwig. ‘“Es ist der Geist, der Sich den Körper Baut”. Schillers
Philosophische und Medizinische Anfänge im Anthropologiegeschichtlichen
Kontext’. In Zeitschrift für Ästhetik und Allgemeine Kunstwissenschaft. 6th Special

Carmen Bartl 21
__________________________________________________________________
Edition: Schillers Natur. Leben, Denken und literarisches Schaffen, edited by

Georg Braungart, and Bernhard Greiner, 75–86. Hamburg: Felix Meiner, 2005.
Till, Dietmar. Das Doppelte Erhabene: Eine Argumentationsfigur von der Antike
bis zum Beginn des 19. Jahrhunderts. Tübingen: Max Niemeyer, 2006.
Carmen Bartl is a PhD candidate in the Department of German at New York

University working on her dissertation about theories of excess in modernity. Her
research often revolves around intersections between literature and the history of
medicine, the cultural construction of illnesses and their representations in German
literature.

Section 2
The Personal Stories

Mandated Motherhood: Biopsychosocial Aspects of Coping
with Infertility
Sara Rieder Bennett

Abstract
Infertility is a chronic biopsychosocial issue that affects approximately one-fifth of
the population and represents a major life crisis for many individuals and couples.
Childbearing and parenting are considered by many societies to be normalised
aspects of adult development, and motherhood specifically may be regarded as a
rite of passage to adulthood. Those who are unable to conform to social norms for
various reasons may experience internalised shame and be open to negative
evaluation, humiliation, and possible violence. 1 As infertility is often a private
condition, only its effects are known by those outside the experience, which can
lead to identity management strategies on the part of those experiencing infertility
and misperception by other individuals. Despite the prevalence and significant
distress of infertility, the mental health literature is limited in understanding the
experience of living and coping with this condition. Qualitative research has
suggested that gender ideologies are related to women’s distress due to infertility.
In particular, the motherhood mandate may be one useful theoretical explanation of
the potential link between gender ideologies and infertility-related distress, as
Russo posited that motherhood has been linked in society to the attainment of an
adult female identity. 2 In addition, these social mandates may impact women’s
appraisals of their experience of infertility. This chapter seeks to present literature
supporting the link between distress and coping related to infertility and the gender
ideologies and appraisals of infertility that women may hold.
Key Words: Infertility, motherhood, stress and coping, social construction, gender
ideologies.
*****
1. Mandated Motherhood
Infertility is a chronic biopsychosocial condition which is often diagnosed after
a woman under age 35 has not become pregnant following a year of unprotected,
well-timed sexual intercourse; within six months if over the age or 35; or she has
been unable to carry a pregnancy to term. 3 In many societies, childbearing and
parenting are considered to be normalised aspects of adult development and
motherhood has been regarded as a rite of passage to adulthood for women in
particular. Yet nearly 10 per cent of women experience a reproductive loss each
year, including those due to miscarriage, stillbirth, medically-necessary abortion,
and infertility. 4 Estimates suggest that infertility may affect between 60 and 80
million individuals worldwide or up to 9.7 per cent of individuals in developing

26 Mandated Motherhood
__________________________________________________________________
nations and 16.7 per cent in industrialised nations. 5 When considering that one
partner in a couple may be diagnosed with infertility, but both are impacted by it,
infertility may affect about 20 per cent of couples worldwide.
Throughout history, infertility has been conceptualised as due to female factors.
However, medical evidence suggests that men and women are equally impacted by
infertility at approximately 35 per cent of the total prevalence, 6 while the
remaining 20 per cent of cases are attributable to both partners and about 10 per
cent to unexplained factors. 7 Though social pressures for parenthood impact both
men and women, these pressures are suggested to be greater for women in many
societies, and those unable to fulfil expected social roles may experience criticism
and stigma. 8
Attitudes toward infertility have often focused on women’s responsibility and
seem to shift based on women’s status within a society. In societies with unequal
gender roles, such as ancient Hebrew society and the Middle Ages in Europe,
infertility was viewed as a divine punishment for women transgressing the laws of
marriage. 9 Conversely, pregnancy has been viewed throughout history as a sign of
divine blessing. Historically, women have been hanged, persecuted, and denounced
as wives when infertility affects a couple, and sexual functions of women have
been used as justification for gender inequalities in societies. 10
Though medical evidence now indicates similar prevalence of infertility in both
genders, women today continue to be disproportionately affected by unsought
advice, pressure, and insensitivity. Terms which have been used as synonyms for
infertility include barren, unproductive, wasted, desolate, and ineffectual. Even
when male partners are diagnosed with infertility, society continues to view the
female partner as the source of the problem and she therefore becomes the target
for emotional stigma, in many cases internalising infertility as due to a
reproductive and role failure on her part. 11
One must question how women come to carry the burden of infertility, and the
greater pressure particularly in androcentric cultures. A theoretical explanation for
this process may lie in social constructionist theory. Social constructionism means
that we create our understanding of the world and this is achieved through our
social interactions. Female gender identity is in many cultures constructed as
nurturing and mothering behaviours and there is a bias toward defining women by
the role of mother. Bartholet writes, ‘Women are taught at birth that their identities
are inextricably linked with their capacity for pregnancy and childbirth and that
this capacity is inextricably linked with mothering.’ 12 Motherhood becomes the
process by which one gains meaning, social acceptance, psychological adjustment,
and attainment of one’s gender and adult roles. Nancy Russo identified this
‘motherhood mandate’ as the social expectation for women’s primary life goal to
be bearing and raising children, and that this is considered a necessary step to
achieve adulthood. 13 Infertility can then be construed as an obstacle to achieving a
desired individual goal, but also as a barrier to achieving adulthood and femininity

Sara Rieder Bennett 27
__________________________________________________________________
in society. Furthermore, though infertility is a private medical condition,
parenthood or the lack thereof are public and those who do not have children are
often devalued in society. Many who experience infertility are likely to engage in
identity management strategies to hide their condition due to the social value
affixed to motherhood. People are prone to display positive self-images and avoid
expression of socially devalued or stigmatised identities, which can limit various
forms of support to women with infertility.
Infertility represents a borderland in the study of health, though, as defining
infertility as an illness has been a more political than scientific discourse.
Regardless of its politics, the experience of infertility can cause one to question the
functioning of her body and thereby cause one to question notions of health. A
woman in a study by Benasutti said, ‘It amazed me that there were so many healthy
women walking around who could not get pregnant.’ 14 This individual struggled
with a conceptualisation of health which could include barriers to expected
developmental milestones.
2. The Borderlands of Infertility

Women who are unable to conceive are potentially subject to adverse
consequences of stigmatised identity in many cultures, which is well expressed by
the word ‘borderland.’ This term can be defined in multiple ways, including
references to debated land, frontiers, or being on the fringe of society. When I
think of borderlands, connotations which come to mind are of danger, hostility,
ambiguity, and a veritable wasteland, terms which have been insensitively
identified with infertility. Benasutti discussed how the stigmatisation of infertility
leads to marginalisation in society which can overlook the experiences of women
and couples, and I believe this can be especially true because of the private nature
of infertility, for example, women may be seen as voluntarily childless, but in fact
experience infertility.
The inability to fulfil an expected and desired developmental task such as
childbearing brings about questions of meaning, purpose, and identity. Fernandes
and colleagues conducted a qualitative study amongst South African women
experiencing infertility and identified multiple sources of shame and ‘spoiled
identity’ which these women faced. Women in their study indicated a physical void
and disability in that their bodies did not live up to their expectations of
functioning. They also discussed their belief that bearing children is a biological
right that will take place when planned. When facing infertility, though, these
women were instead exposed to negative discourse such as being barren, arid, and
lacking control. Women faced a loss of identity and control, emptiness, isolation,
and anger, out of which Fernandes and colleagues suggested these women had to
make meaning in order to work through their suffering. 15
Though many indicate experiencing distress due to infertility, the severity of
distress may vary depending on social constructions related to parenting, children,

__________________________________________________________________
and gender. Qualitative exploration of women’s experiences of infertility in
Bulgaria identified traditional conceptualisations of childless women as dangerous,
deviant, and guilty. 16 Despite some modernisation of views, women discussed
several aspects of identity which were put into question as a result of infertility.
Women tended to internalise views of themselves as incomplete, separate, and
defective from others, to the point of seeing their entire identity as infertile. Many
stated a desire to be invisible or absent, or worrying that they would become so
because they were not mothers. These views spilled over into work and physical
identities, in addition to gender and social lives discussed in other studies. Some
women began to question the worth of work, particularly when they viewed
financial stability as a means of supporting a family. Perceptions of the body as
‘failed’ also tended to transfer to a devaluing of their entire being. In addition,
infertility treatments often brought about changes in women’s physical boundaries
due to the technical nature and invasiveness of procedures. Overall, women
struggled to integrate the new experiences of infertility and childlessness with their
expected and anticipated selves, which can be conceptualised as placing women in
a borderland experience related to health and identity.
3. Well-Being and Distress

Not all women who experience infertility report psychological distress, and
inconsistencies in research suggest the potential for mediating and moderating
factors in distress. Exploration of factors related to well-being has been more
limited than studies which focus on distress; however, understanding psychological
and physiological well-being is as important as distress, because it can lessen the
stress related to medical treatment and social stigma. The study of distress and
well-being in infertility may be approached through Lazarus and Folkman’s stress
and coping model which explains stress as the ‘relationship between the person and
the environment that is appraised by the person as taxing or exceeding his or her
resources and endangering his or her well-being.’ 17 Individuals may experience
increased stress when appraising a situation as a significant stressor, or when they
believe they do not have the sufficient resources with which to cope with the
stressor. In the model, primary appraisals refer to evaluating the situation as a loss,
threat, or challenge, while secondary appraisals refer to one’s perceived physical,
social, psychological and material resources with which to manage the stressor.
Threat and loss appraisals are posited to cause increased stress, as would appraisal
of insufficient coping resources for the threat or loss.
Zucker studied women’s experiences with reproductive loss using the stress
and coping model in a longitudinal study. Results suggested that women who had
experienced infertility expressed greater feelings of failure and uncertainty than
those who reported abortion or miscarriage. 18 Women in medical treatment for
infertility are more likely to view it as a threat than a loss, though appraisals may
shift to loss over time if medical treatment is unsuccessful. 19 In a retrospective

__________________________________________________________________
questionnaire study, van den Akker explored fertility, perceptions of artificial
reproductive technology and adoption, and the importance of genetic links to
children. Data indicated that individuals felt devastated by their initial diagnosis of
infertility, and would pursue adoption only after extensive tests and treatment were
unsuccessful. Van den Akker proposed that women may have undergone a shift in
appraisal of the importance of a genetic link to children, due to cognitive
dissonance when they recognised they would be unable to fulfil the goal of
parenthood otherwise. 20
Though most studies examining primary appraisals have focused on threat and
loss, Hansell and colleagues found that half of women in their sample reported
infertility as a loss and half as a challenge. Those reporting infertility as a
challenge also indicated experiencing significantly less psychological distress than
women who appraised it as a loss. Hansell and colleagues provided important data
indicating that differing primary appraisals of infertility are related to level of
distress, as supposed in the stress and coping model. 21 Their work also suggests the
potential for reappraisal or meaning-making.
For women who identify motherhood as a necessary condition to attaining adult
female identity, particularly in pronatalist societies, 22 infertility seems likely to be
appraised as a greater threat or loss than to those who do not link motherhood and
female identity. Several qualitative studies suggest that linking motherhood to
womanhood brings about distress, self-blame, and questioning of deviation from
expected adult development. Infertility must be understood in the social and
ideological context in which it occurs. In pronatalist societies, biological
parenthood and traditional conceptualisations of family are often viewed as
necessary precursors to adulthood, despite that they may be defined in too
idealistic a manner. The tension which may be felt by a woman with infertility is
expressed in the following narrative about her support system:
All the ups and downs and feeling like less of a woman…I
needed them reassuring me that they love me, despite the
infertility. That I’m a good person with or without kids. 23
However, the experience of ambiguity may also provide opportunities, that a

border is a place to face difficult questions, be open to new possibilities, and make
meaning. For example, Benasutti found that women identified ways to express
creativity and generativity, regardless of eventual parenthood status, and that this
allowed them to gain strength and make meaning out of their experiences. 24 Parry
also noted that women’s perceptions and meanings changed over the course of
infertility. 25 Initially, she found that all of the women in her study started with
traditional Western conceptualisations of a nuclear family and they viewed
marriage as a public signal of their readiness to pursue parenthood. Those who
eventually gave birth discussed attaining parenthood as a struggle, and something

__________________________________________________________________
to be appreciated even more than had been expected. Women who chose to end
medical treatment through adoption or childfree living tended to broaden their
concept of family, becoming more focused on emotional intimacy instead of
genetics as a means of parenting. Though this study does not directly link to the
stress and coping model, Parry does state that perceptions and appraisals change
over the course of infertility treatment, which can be expressed in the narrative of a
28-year-old woman:
I now know I don’t have control over my reproductive abilities

and have started associating the treatment with miserable
stuff…it just seems like my thoughts have shifted. It wasn’t
overnight or BOOM I now want to adopt, but rather a more
gradual acceptance. 26
Few quantitative studies have examined the possible link between motherhood
appraisal and distress. Brothers and Maddux used a survey-design and
hypothesised that linking, a process by which individuals cognitively associate
certain concepts, occurs between concepts such as parenthood and happiness and
that it is this process which can bring about distress. The authors assessed the role
of linking in infertility-specific distress using standardised questionnaires and
found that, although distress was not related to the importance people placed on
parenthood, linking parenthood to positive outcomes was related to distress. For
instance, those who viewed parenthood as related to marital satisfaction or
femininity were more likely to report distress than those who did not. These
individuals were also more likely to ruminate about infertility if parenthood was
linked to marital satisfaction, femininity, social acceptance, and attainment of adult
status. 27 Though the loss of an expected life goal can initially bring about
significant distress and difficulty coping, it seems that one’s eventual interpretation
and ability to make sense of the loss is critical to understanding its long-term
impact.
4. Examination of Distress and Well-Being in Infertility

In reviewing the literature on social constructions of motherhood, and distress
and well-being related to infertility I decided to conduct a survey of women
experiencing infertility and I hypothesised that women’s gender ideologies might
impact their appraisal of infertility, and this relationship would in turn influence
their experiences of infertility. Lazarus and Folkman’s model of stress and coping
suggests that one’s primary appraisal of a stressor as a loss, threat, or challenge can
impact distress due to that event. 28 I also questioned if women who link
motherhood to femininity, adulthood, and role achievement in society, as per
Russo’s motherhood mandate, would be more likely to view infertility as a threat
or loss, and thereby to report more distress and less well-being. 29

__________________________________________________________________
To examine these questions, I surveyed 239 women through the use of
purposeful and snowball sampling with online measures. Participants were asked
to complete a demographic and reproductive information form, the Satisfaction
with Life Scale, 30 the Infertility-Specific Distress scale, 31 the Appraisal of Life
Events scale, 32 and the Conformity to Feminine Norms Inventory. 33 Correlational
and linear regression analyses were performed as primary data analysis and to
assist in determining a potential path analytic model by which to test my
hypotheses. While both the loss and threat subscales worked appropriately, the
challenge items appeared to be inconsistent with the experiences of women with
infertility and were removed from analysis due to poor reliability. The results
provided support for the stress and coping model for the loss and threat appraisals,
suggesting that women who view infertility as a threat or loss are more likely to
experience distress and less likely to report subjective well-being. Others have
suggested that the experience of infertility can be viewed as a struggle to be
overcome, particularly through meaning-making, though the appraisal measure in
my study represented ‘challenge’ in more positive terms, such as ‘exciting’ in
addition to somewhat more neutral terms such as ‘informative.’ 34 The study also
provided moderate support for the motherhood mandate regarding infertility-
specific distress, with the effect fully mediated through primary appraisals of loss
and threat. The sample included women who desired to overcome infertility
through biological parenthood, which may have limited variability in regard to
social constructions of gender and motherhood. In addition, the measure assessing
the motherhood mandate (Conformity to Feminine Norms Inventory) may not have
been specific enough to the social constructions linking motherhood with
femininity.
5. Conclusion
The present data are consistent with the idea that adhering to social norms
regarding gender can impact appraisal of infertility, and that the appraisal affects
one’s distress regarding infertility. Numerous qualitative studies have suggested
conflict related to social stigma and feminine identity, and the results of this study
are consistent though indicate a need for caution regarding the magnitude of the
effect. For example, women who are facing infertility may struggle to come to
terms with the potential loss of a desired and expected goal, particularly with
advances in medical technology that have brought about a belief that possibilities
always remain on the horizon. Illustrating this conflict are Diana Parry’s narratives
about infertility, such as the following:
I am beginning to realise, although I thought the medical

intervention would give me control over things, it really doesn’t.
I realised it is not like I really want a child so bad right now. It is
just that I can’t do it. What bothers me is that I’m 28 and I’m

__________________________________________________________________
thinking I should be able to get pregnant with no problem. I can’t
let go of that thought. It keeps me up at night. It’s with me all the
time. 35
Continued research is needed to explore the lived experience of individuals

with infertility. As with any chronic illness, women with infertility face significant
distress, including grief, loss of control, powerlessness, fear, and anger. 36 Further
study can help to elaborate on living with infertility, and assist women in making
meaning from their experiences in order to cope with it.
Notes
1
Selcuk R. Sirin, Donald R. McCreary and James R. Mahalik, ‘Differential
Reactions to Men and Women’s Gender Role Transgressions: Perceptions of
Social Status, Sexual Orientation, and Value Dissimiliarity’, The Journal of Men’s
Studies 12 (2004): 119-132.
2
Nancy Russo, ‘The Motherhood Mandate’, Journal of Social Issues 32 (1976):
143-153.
3
Practice Committee of the American Society for Reproductive Medicine,
‘Definitions of Infertility and Recurrent Pregnancy Loss’, Fertility and Sterility 90
(November 2008): S60.
4
Irving G. Leon, ‘Reproductive Loss: Barriers to Psychoanalytic Treatment’, The
Journal of the American Academy of Psychoanalysis 24 (1996): 341-353.
5
Olga van den Akker, ‘Adoption in the Age of Reproductive Technology’, Journal
of Reproductive and Infant Psychology 19 (2001): 147-159; Jacky Boivin, Laura
Bunting, John A. Collins and Karl G. Nygren, ‘International Estimates of Infertility
Prevalence and Treatment-Seeking: Potential Need and Demand for Infertility
Medical Care’, Human Reproduction 22 (2007): 1506-1512.
6
Miriam B. Rosenthal and James Goldfarb, ‘Infertility and Assisted Reproductive
Technology: An Update for Mental Health Professionals’, Harvard Review of
Psychiatry 5 (1997): 169-172.
7
Alessandra Santona and Giulio Cesare Zavattini, ‘Partnering and Parenting
Expectations in Adoptive Couples’, Sexual and Relationship Therapy 20 (2005):
309-322.
8
Kathleen A. Kikendall, ‘Self-Discrepancy as an Important Factor in Addressing
Women’s Emotional Reactions to Infertility’, Professional Psychology: Research
and Practice 25 (1994): 214-220.
9
Phillipe Morice, Patrice Josset, Charles Chapron and Jean-Bernard Dubuisson,
‘History of Infertility’, Human Reproduction Update 1 (1995): 497-504.
10
Anne Bolin and Patricia Whelehan, Perspectives on Human Sexuality (Boston,
MA: McGraw Hill, 2004).

__________________________________________________________________
11
Leon, ‘Reproductive Loss’, 341-353. Rita Diana Benasutti, ‘Infertility:
Experiences and Meanings’, Journal of Couple & Relationship Therapy 3 (2003):
51-71.
12
Elizabeth Bartholet, Family Bonds: Adoption, Infertility, and the New World of
Child Production (Boston, MA: Beacon Press, 1993), 35.
13
Russo, ‘Motherhood Mandate’, 143-153.
14
Benasutti, ‘Infertility’, 64.
15
Paula Fernandes, Maria Papaikonomou and Johannes M. Niewoudt, ‘Women
Suffering through Their Bodies’, South African Journal of Psychology 36 (2006):
851-879.
16
Irina L. G. Todorova and Tatyana Kotzeva, ‘Contextual Shifts in Bulgarian
Women’s Identity in the Face of Infertility’, Psychology & Health 21 (2006): 123-
141.
17
Richard S. Lazarus and Susan Folkman, Stress, Appraisal, and Coping (New
York: Spring Publishing Company, 1984), 21.
18
Alyssa N. Zucker, ‘The Psychological Impact of Reproductive Difficulties on
Women’s Lives’, Sex Roles 40 (1999): 767-786.
19
Lesley A. Glover, Ashleigh McLellan and Susan M. Weaver, ‘What Does
Having a Fertility Problem Mean to a Couple?’, Journal of Reproductive and
Infant Psychology 27 (2009): 401-418.
20
Olga van den Akker, ‘The Acceptable Face of Parenthood: The Relative Status
of Biological and Cultural Interpretations of Offspring in Infertility Treatment’,
Psychology, Evolution & Gender 3 (2001): 137-153.
21
Patricia L. Hansell, Beverly E. Thorn, Steven Prentice-Dunn and Donna L.
Floyd, ‘The Relationships of Primary Appraisals of Infertility and Other
Gynecological Stressors to Coping’, Journal of Clinical Psychology in Medical
Settings 5 (1998): 133-145.
22
23
Parry, ‘Understanding Women’s Lived Experiences’, 910.
24
Benasutti, ‘Infertility’, 51-71.
25
Diane C. Parry, ‘Women’s Experiences with Infertility: The Fluidity of
Conceptualizations of “Family”’, Qualitative Inquiry 28 (2005): 275-291.
26
Parry, ‘Understanding Women’s Lived Experiences’, 919.
27
Suzanne C. Brothers and James E. Maddux, ‘The Goal of Biological Parenthood
and Emotional Distress from Infertility: Linking Parenthood to Happiness’,
Journal of Applied Social Psychology 33 (2003): 248-262.
28
Lazarus and Folkman, ‘Stress, Appraisal, and Coping’, 21.
29
30
Ed Diener, et al., ‘The Satisfaction with Life Scale’, Journal of Personality
Assessment 49 (1985): 71-75.

__________________________________________________________________
31
Suzanne M. Miller, et al., ‘Intrusive and Avoidant Ideation among Females
Pursuing Infertility Treatment’, Psychology and Health 13 (1998): 847-858.
32
Eamonn Ferguson, Gerald Matthews and Tom Cox, ‘The Appraisal of Life
Events Scale: Reliability and Validity’, British Journal of Health Psychology 4
(1999): 97-116.
33
James R. Mahalik, et al., ‘Development of the Conformity to Feminine Norms
Inventory’, Sex Roles 52 (2005): 417-435.
34
Benasutti, ‘Infertility’, 51-71. Parry, ‘Women’s Experiences’, 275-291.
35
Diane C. Parry, ‘Understanding Women’s Lived Experience with Infertility:
Five Short Stories’, Qualitative Inquiry 10 (2004): 919.
36
Kim Kluger-Bell, Unspeakable Losses: Healing from Miscarriage, Abortion,
and Other Pregnancy Loss (New York, NY: Quill, 2000).
Bibliography
Barone-Chapman, Maryann. ‘The Hunger to Fill an Empty Space: An Investigation
of Primordial Affects and Meaning-Making in the Drive to Conceive through
Repeated Use of ART’. Journal of Analytic Psychology 52 (2007): 479–501.
Bartholet, Elizabeth. Family Bonds: Adoption, Infertility, and the New World of
Child Production. Boston, M.A.: Beacon Press, 1993.
Baumann, Carol. ‘Adoptive Fathers and Birthfathers: A Study of Attitudes’. Child

and Adolescent Social Work Journal 16 (1999): 373–391.
Benasutti, Rita Diana. ‘Infertility: Experiences and Meanings’. Journal of Couple

& Relationship Therapy 3 (2003): 51–71.
Boivin, Jacky, Laura Bunting, John A. Collins, and Karl G. Nygren. ‘International
Estimates of Infertility Prevalence and Treatment-Seeking: Potential Need and
Demand for Infertility Medical Care’. Human Reproduction 22 (2007): 1506–
1512.
Bolin, Anne, and Patricia Whelehan. Perspectives on Human Sexuality. Boston,

M.A.: McGraw Hill, 2004.
Brothers, Suzanne C., and James E. Maddux. ‘The Goal of Biological Parenthood
and Emotional Distress from Infertility: Linking Parenthood to Happiness’.
Journal of Applied Social Psychology 33 (2003): 248–262.

__________________________________________________________________
Brown, Leah M. The History of Infertility: Frustration Survives the Centuries but
Ignorance does Not. 2011. Accessed May 1, 2011.
http://www.babyzone.com/preconception/infertility/article.
Cudmore, Lynn. ‘Becoming Parents in the Context of Loss’. Sexual and

Relationship Therapy 20 (2005): 299–308.
Daniluk, Judith C., and Joss Hurtig-Mitchell. ‘Themes of Hope and Healing:
Infertile Couples’ Experiences of Adoption’. Journal of Counseling &
Development 81 (2003): 289–399.
Deaux, Kay, Mary Kite, and Elizabeth L. Haines. ‘Gender Stereotypes’. In

Psychology of Women: A Handbook of Issues and Theories, edited by F. L.
Denmark, and M. A. Paludi, 205–236. Westport, CT: Greenwood Press, 1993.
Diener, Ed, Robert A. Emmons, Randy J. Larsen, and Sharon Griffin. ‘The
Satisfaction with Life Scale’. Journal of Personality Assessment 49 (1985): 71–75.
Drewett, Robert F. ‘Uncertain Comforts: The Justification for Treating Infertility’.

Journal of Reproductive and Infant Psychology 12 (1994): 173–178.
Edelmann, Robert J., and Kevin J. Connolly. ‘Psychological State and

Psychological Strain in Relation to Infertility’. Journal of Community & Applied
Social Psychology 8 (1998): 303–311.
Ferguson, Eamonn, Gerald Matthews, and Tom Cox. ‘The Appraisal of Life
Events Scale: Reliability and Validity’. British Journal of Health Psychology 4
(1999): 97–116.
Fernandes, Paula, Maria Papaikonomou, and Johannes M. Nieuwoudt. ‘Women

Suffering through Their Bodies’. South African Journal of Psychology 36 (2006):
851–879.
Fowers, Alyssa F., and Blaine J. Fowers. ‘Social Dominance and Sexual Self-
Schema as Moderators of Sexist Reactions to Female Subtypes’. Sex Roles 62
(2010): 468–480.
Glover, Leslie, Ashleigh McLellan, and Susan M. Weaver. ‘What Does Having a
Fertility Problem Mean to a Couple?’. Journal of Reproductive and Infant
Psychology 27 (2009): 401–418.

__________________________________________________________________
Gonzalez, Lois. ‘Infertility as a Transformational Process: A Framework for

Psychotherapeutic Support of Infertile Women’. Issues in Mental Health Nursing
21 (2000): 619–633.
Hansell, Patricia L., Beverly E. Thorn, Steven Prentice-Dunn, and Donna L. Floyd.
‘The Relationships of Primary Appraisals of Infertility and Other Gynecological
Stressors to Coping’. Journal of Clinical Psychology in Medical Settings 5 (1998):
133–145.
Jordan, Caren, and Tracey A. Revenson. ‘Gender Differences in Coping with

Infertility: A Meta-Analysis’. Journal of Behavioral Medicine 22 (1999): 341–358.
Kikendall, Kathleen. ‘Self-Discrepancy as an Important Factor in Addressing

Women’s Emotional Reactions to Infertility’. Professional Psychology: Research
and Practice 25 (1994): 214–220.
Kluger-Bell, Kim. Unspeakable Losses: Healing from Miscarriage, Abortion, and

Other Pregnancy Loss. New York, N.Y.: Quill, 2000.
Koropecky-j-Cox, Tanya, and Gretchen Pendell. ‘The Gender Gap in Attitudes

about Childlessness in The United States’. Journal of Marriage and Family 69
(2007): 899–915.
LaMastro, Valerie. ‘Childless By Choice? Attributions and Attitudes Concerning

Family Size’. Social Behavior and Personality 29 (2001): 231–244.
Lazarus, Richard S., and Susan Folkman. Stress, Appraisal, and Coping. New
York: Spring Publishing Company, 1984.
Leon, Irving G. ‘Reproductive Loss: Barriers to Psychoanalytic Treatment’. The

Journal of the American Academy of Psychoanalysis 24 (1996): 341–353.
Mahalik, James R., Elisabeth B. Morray, Aimee Coonerty-Femiano, Larry H.

Ludlow, Suzanne M. Slattery, and Andrew Smiler. ‘Development of the
Conformity to Feminine Norms Inventory’. Sex Roles 52 (2005): 417–435.
Miller, Suzanne M., Walter Mischel, Christine M. Schroeder, Joanne S. Buzaglo,

Karen Hurley, Pamela Schreiber, and Charles E. Mangan. ‘Intrusive and Avoidant
Ideation among Females Pursuing Infertility Treatment’. Psychology and Health
13 (1998): 847–858.

__________________________________________________________________
Morice, Phillipe, Patrice Josset, Charles Chapron, and Jean-Bernard Dubuisson.

‘History of Infertility’. Human Reproduction Update 1 (1995): 497–504.
Parry, Diana C. ‘Understanding Women’s Lived Experience with Infertility: Five

Short Stories’. Qualitative Inquiry 10 (2004): 909–922.
—––. ‘Women’s Experiences with Infertility: The Fluidity of Conceptualizations

of “Family”’. Qualitative Inquiry 28 (2005): 275–291.
Practice Committee of the American Society for Reproductive Medicine.

‘Definitions of Infertility and Recurrent Pregnancy Loss’. Fertility and Sterility 90
(November 2008): S60.
Remennick, Larissa. ‘Childless in the Land of Imperative Motherhood: Stigma and

Coping among Infertile Israeli Women’. Sex Roles 43 (2000): 821–841.
Roberts, Laura M., Isis H. Settles, and William A. Jellison. ‘Predicting the
Strategic Identity Management of Gender and Race’. Identity: An International
Journal of Theory and Research 8 (2008): 269–306.
Rosenthal, Miriam B., and James Goldfarb. ‘Infertility and Assisted Reproductive
Technology: An Update for Mental Health Professionals’. Harvard Review of
Psychiatry 5 (1997): 169–172.
Russo, Nancy. ‘The Motherhood Mandate’. Journal of Social Issues 32 (1976):

143–153.
Santona, Alessandra, and Giulio Cesare Zavattini. ‘Partnering and Parenting

Expectations in Adoptive Couples’. Sexual and Relationship Therapy 20 (2005):
309–322.
Sirin, Selcuk R., Donald R. McCreary, and James R. Mahalik. ‘Differential

Reactions to Men and Women’s Gender Role Transgressions: Perceptions of
Social Status, Sexual Orientation, and Value Dissimiliarity’. The Journal of Men’s
Studies 12 (2004): 119–132.
Todorova, Irina L.G., and Tatyana Kotzeva. ‘Contextual Shifts in Bulgarian

Women’s Identity in the Face of Infertility’. Psychology & Health 21 (2006): 123–
141.

__________________________________________________________________
Van den Akker, Olga. ‘Adoption in the Age of Reproductive Technology’. Journal
of Reproductive and Infant Psychology 19 (2001): 147–159.
—––. ‘The Acceptable Face of Parenthood: The Relative Status of Biological and
Cultural Interpretations of Offspring in Infertility Treatment’. Psychology,
Evolution & Gender 3 (2001): 137–153.
Zucker, Alyssa N. ‘The Psychological Impact of Reproductive Difficulties on

Women’s Lives’. Sex Roles 40 (1999): 767–786.
Sara Rieder Bennett, PhD, is a licensed psychologist and Coordinator of

Research Services at Counseling and Psychological Services for Clemson
University. Areas of clinical and research interest include multicultural issues,
feminist psychology, reproductive health psychology, developmental and
adjustment concerns, assessment, and providing training and supervision to
counseling and psychology trainees.

Psychosocial Support in Multiple Sclerosis: The Confidant
Relationship Explored
Jane Grose, Jenny Freeman and Heather Skirton

Abstract
In the majority of Western societies where health and social care provision for long
term conditions has been planned, the need for psychosocial support is emphasised.
However, definitions are often broad and may have different meanings for health
and social care workers and individuals living with long-term conditions. In this
research we aimed to explore the experience of living with multiple sclerosis to
enhance our understanding of the meaning of psychosocial support for people with
the condition. Using a phenomenological qualitative approach, both people with
multiple sclerosis and those they identified as providing psychosocial support to
them (their confidants) were interviewed. Results were presented to a range of
health and social care workers in focus groups to explore their responses. Three
major themes emerged from the interviews: (1) people with multiple sclerosis do
not want to be defined by their condition and want to live as normal a life as
possible; (2) the confidant helps to maintain this sense of normality; (3) they both
value the relationship and together try to manage the realities of living with the
condition. Three key issues emerged from the focus groups with healthcare
workers: (1) workers can use language that contradicts the rhetoric of ‘patient-
centered care’; (2) some believe they can have a ‘transient confidant’ relationship
with clients where emotions can be expressed; (3) some feel untrained to deal with
clients emotions, especially those related to intimacy. This rejection of the
biomedical model of disease in favour of value-based relationships presents
challenges for health workers who are restricted, by ethical codes and reduced
resources, in their management and relationships with patients.
Key Words: Multiple sclerosis, qualitative research, confidant, phenomenology,

psychosocial support.
*****
1. Introduction
Multiple Sclerosis (MS) is a disease which can affect relatively young people in
their 20’s and, although the disease progresses over time, they can live a full life
span. 1 The diagnosis of a long-term condition, particularly with increasing
disability, changes the narrative of an individual’s life to such a degree that
expectations, hopes and plans are fundamentally disrupted, identity becomes
confused 2 and the individual’s relationship with people and objects becomes
increasingly challenging. 3 Inevitably the individual, to maintain quality of life,
seeks help from a range of health and social care workers (H&SCW) to manage the

40 Psychosocial Support in Multiple Sclerosis
__________________________________________________________________
changes, both physical and psychological. This can create a tension between living
in the social world and managing the biomedical world. This tension was described
by Habermas 4 in terms of ‘value rationality,’ in essence the way a person functions
in the social world, based on context and the inter-relationship between friends,
family, work and socioeconomic status and this he contrasted with ‘purposive
rationality,’ or the biomedical model, which is described as the systems, rules and
ethos of clinicians whose work focuses on the diseased body and aims to find
treatments to relieve symptoms in the absence of a cure.
2. Aim of the Research

The aim of the study was to explore the effects of living with multiple sclerosis
on a primary relationship: the relationship between a person with MS and their
closest confidant.
3. Methods
In this study individual semi-structured in-depth interviews offered participants
the time to describe their experience of MS, and reflect upon how, when, where,
and by whom they felt emotionally supported. Of particular relevance to this
research is that focus groups have been shown to be useful in understanding how
people think about a particular problem and to encourage them to challenge ideas
through group interaction. 5 Ethical approval was obtained from the National
Health Service (NHS) Regional Research Ethics Committee.
Purposive sampling was used to recruit a maximum variation sample in terms
of disability level, disease duration, sex, age, and type of MS. As part of this
sampling strategy, we were interested in interviewing people who had a confidant
as well as those who did not.
The individual in-depth interviews lasting about 45 minutes were undertaken
with people with MS (13 people with a confidant and 7 people without, total n =
20). Separate individual interviews were undertaken with the confidants (n = 13).
Each participant (n = 33) was interviewed in his or her own home.
Data were analysed thematically using recognised methods validated by leading
authors in the field. 6
4. Findings
Definition of a Confidant
The people with MS who were interviewed had no difficulty in describing the
role their chosen confidant played in their lives. A female with MS said, ‘Sharing
everything with somebody that you feel safe with, you can share with…. having
somebody who understands you, and has empathy.’ Another said ‘humanity
without the fuss.’

Jane Grose, Jenny Freeman and Heather Skirton 41
__________________________________________________________________
It also appeared that the relationship was reciprocal with the confidant aware of
how much they benefitted from the relationship, such as expressed by this male
confident, ‘It’s a nice feeling, quite special, not just a normal husband or wife.’
Normality
The participants described the importance of feeling normal and not being
defined by the disease. This involved removing MS as the central focus of their
lives:
We’re not absolutely different from other people just because we

have MS. We do other things just as normal... in reality we’re all
human beings, we love, we hate, we argue, we have to go to
work, so it’s only part of our lives (male with MS).
This default position was often challenged when their own symptoms or the
outside world reminded them that they had MS:
You feel guilty, when you go to Sainsbury’s, for example, and

you park in the designated area (disability parking bays) and
people are always looking at you because if you’re not 65 and
crippled….they think you don’t deserve it (female with MS)
Role of the Confidant: Supportive Collusion

The role of the confidant related strongly to the need to feel normal and the
confidants recognised their role in helping to maintain this. They appeared to have
an unspoken understanding between themselves about how to manage the
symptoms of MS to enable the person with MS to live as normal a life as possible:
The fact that you don’t have to think three times before saying
anything…it’s the trust, it’s the understanding, the fact that I
understand (confidant) and she understands the way I work…
you don’t have to be careful (female with MS).
The confidants described many ways that helped them to make this possible.
One example was educating themselves about MS in order to be able to hold
informed discussions with the person with MS should they want to. It was this
preparedness that was recognised as a positive form of collusion.
If a problem comes up we do discuss it obviously. If she’s

feeling under the weather…but I don’t think it’s something you
want to talk about all the time. You just have to get on with it
and see how it goes (female confidant).

__________________________________________________________________
The confidant would plan ahead and organise transport and rooms so they fitted
the needs of the person with MS. The key to this was ensuring the person with MS
was not made aware of this constant planning on their behalf, thereby enabling the
person with MS to maintain a sense of control.
When she comes in here I get the pillows because this (the sofa)
is obviously not good when she’s having a relapse. Erm, but if
she’s able to come out with a stick I just, you know, do what I
can do to make her comfortable when she’s here (female
confidant).
The role of the confidant was therefore to be aware of the emotional and
physical needs of the person with MS and to anticipate what needed to be done
without the need to point out what they were doing, such as expressed by this
female confident, ‘Me ignoring it helps him ignore it.’
They also protected the person with MS from others’ attempts to draw attention
to the disease. This was sometimes extremely difficult and caused the confidant
some anxiety:
I feel like reacting quite strongly to the way people treat her.
People treat the situation because she looks okay, she’d be much
better if she was hobbling around with a stick... and I’m the only
person who really knows about anything she feels (male
confidant).
In contrast to people with a confidant, the findings suggested that those who did
not have a confidant appeared to have had in the past problems with relationships
unrelated to MS, that had affected their willingness to trust others in an intimate
way. Some had been divorced and some had a series of unsuccessful experiences.
Others felt that if they had a confidant to help them with their MS then they would
have to admit they had MS:
But I’m still not gonna admit it to myself that I need a confidant
because to me a confidant for MS means I’m worried about it,
and I’m not, it’s just an illness (female with MS with no
confidant).
Facing Reality
The person with MS and their confidant faced the reality of living with MS
together. We use the example here of intimacy to describe how MS and H&SCW’s
responses to it could affect sense of identity. One female interviewee explained

__________________________________________________________________
how the physical symptoms of MS had affected her ability to enjoy an intimate
relationship with her husband: it is a chastity belt I never wanted.
When the participants were asked about whether they could discuss these
issues with the H&SCW’s involved in their care, they explained how
uncomfortable the H&SCW’s seemed to be if they brought the subject to their
attention. A woman with MS said, ‘It’s a very good way of ending the
conversation before it’s even got started!’
5. Focus Groups with Health and Social Care Workers

Findings
The researcher then conducted two focus groups with H&SCWs. At these focus
groups the themes generated from the interviews with people with MS and their
confidants were presented to the groups.
Toeing the Party Line?

While the H&SCW’s expressed the need to respect the individual’s wishes,
some of the comments suggested a different underlying attitude. The negative tone
and delivery of some of the comments about people with MS was notable. For
example, when discussing the theme concerning a person’s need to be and feel
normal, one professional suggested:
But don’t you find sometimes they are very unrealistic in what
they are trying to achieve. And actually in thinking of themselves
as normal they are in fact enhancing their problems
(professional, focus group 1).
Whilst initially there seemed to be a general agreement with this statement,

later in the same focus group they seemed to change their tone. Participants began
to talk about the importance of the individual, of listening to patients, and treating
them as equals in care. A professional in the first focus group said, ‘It’s about
treating them as individuals. That’s what you have to do all the time.’ This
negative followed by a positive statement continued throughout the focus groups,
hence the title of this theme, because it became difficult to distinguish between the
rhetoric of ‘patient centred care’ and the reality of individual attitudes.
A Fine Line
When considering whether H&SCWs could take on a confidant role with their
patients/clients, with all the unspoken understanding and supportive collusion that
might require they described a variety of barriers that might prevent this being
possible. The first was the need to set ‘boundaries’ with their patients.

__________________________________________________________________
As professionals we constantly battle with where the boundary
line is…and with some people you can get quite friendly because
it doesn’t overstep the boundary. But ultimately, I don’t think
you can become someone’s friend in a work setting, it would
almost be considered unprofessional for a clinician to become
like that (professional, focus group 1).
There was also the reality of having the time to devote to individual patients.
H&SCWs wanted to provide emotional support for the users of their services but
sometimes felt anxious about the amount of involvement needed compared to the
time they had available. A professional in the first focus group said, ‘but the
broader issue of longer term emotional support, I often feel uncomfortable about
getting in to that. We’ve got a lot of other things to do as well.’
They felt that they had not had enough training to deal with emotional problems
such as those related to intimacy. The immediate response seemed to be to refer on
to another professional qualified in this area:
…the elements of someone’s personal life are probably a GP’s

[general practitioner] remit really. But secondly I would always
send them along to the support groups who I do actually know
have leaflets on that kind of thing (professional, focus group 1).
Benign Neutral - The Transient Confidant

Across the two focus groups there was critical discussion about how H&SCWs
could take on a confidant role. Some felt that their availability as a confidant might
differ from those confidants who were family or friends by offering a briefer, but
no less intense, role as a ‘transient confidant:’
It occurs to me that it might not be an absolute relationship - it

might be a transient one. On this occasion, with this person, I
believe I have been a confidant. But next week they might view
me very differently (professional, focus group 2).
In the second focus group the members discussed the idea of a ‘benign neutral,’
someone who could absorb emotion-based information that a person with MS
might find difficult to share with others:
One described me as a benign neutral, as someone I can talk

to…from his point of view I wasn’t emotionally tied to him, I
had knowledge and the understanding and rapport…I suppose he
knew I wouldn’t shy away from him (professional, focus group
2).

__________________________________________________________________
The H&SCW’s dedication was self-evident. They were enthusiastic about
being involved in the focus groups and readily gave of their time and opinions.
They recognised the value of providing some emotional support but they were
pressured by time on the one hand and anxious about not being able to deal with
emotional problems which might arise on the other.
6. Discussion
This is the first time confidant relationships have been studied in relation to
MS. The study demonstrated that all participants with MS, whether or not they
identified themselves as having a confidant, had very clear views on the definition
of this role and how it would be of benefit to them. Those without a confidant saw
part of their current struggle to be finding someone who might offer them
emotional comfort. For the confidants the value of having been chosen for the role
and the reciprocity experienced because of it seemed to be sufficient reward for the
effort involved in helping the person with MS to maintain their sense of normality.
The confidant relationship offers a shield from outside pressures from the demands
of clinical care and treatment to the pressures from society which does not always
respond positively to people with impairment. Figure 1 provides a diagrammatic
representation of the role of the confidant.
Figure 1: The role of the confidant: The confidant relationship offers protection
and a supportive collusion in maintaining a sense of being and feeling normal.
The majority of Western governments aim to encourage the self-efficacy of

people with chronic illness. 7 This at a time when the pressure of working in a

__________________________________________________________________
resource-restricted service may mean that, despite their determination to provide
high-quality care, H&SCWs are only able to provide treatment and services that fit
local objectives and targets, rather than providing care tailored to the specific needs
of the individual. Shakespeare and Watson describe 8 ‘a mature society supports
everyone on the basis, not of the work they have done, but of the needs they have.’
Taking this into account our study suggests that care might be re-focussed to
enable people with MS to feel normal and be a valued part of society.
7. Implications for Practice

Role of the confidant. Many participants felt strongly that they did not want to
share treatment decisions with their spouse and yet felt their confidant had a major
role to play in future care discussions.
Defining people with MS by their condition. People with MS did not want to be
defined by their condition. One way in which H&SCWs might address this issue is
first to be aware of its importance to people with MS and then to focus on the
reality of current everyday experience, not focussing on problems but enhancing
the possible.
Intimate relationship. Intimate relationships can be a marker for psychosocial
support as they relate strongly to feeling valued and normal. There needs to be an
open and non-judgmental discussion about why it is that H&SCWs avoid
discussion about intimacy.
8. Conclusion
The complexity of the therapeutic relationship between people with long-term
conditions and their H&SCWs usually increases as their condition deteriorates. We
have presented a case for adaptation of the current delivery of care to people with
MS, recognising the value of confidant type relationships that remove the focus of
care from problem solving to maintaining whatever an individual needs to maintain
their sense of normality. We suggest that confidant relationships offer a template
for appropriate and enduring psychosocial support.
Notes
1
Alan Thompson and Xavier Montalban, ‘Diagnostic Criteria for Primary
Progressive Multiple Sclerosis: A Position Paper’, Annals of Neurology 47 (2000):
831-835.
2
Gerald Devins and Zachary Shnek, Multiple Sclerosis. Handbook of
Rehabilitation Psychology, eds. Robert G. Frank and Timothy R Elliot
(Washington, DC: American Psychological Association, 2000), 76.
3
Graham Scambler and Anthony Hopkins, ‘Being Epileptic: Coming to Terms
with Stigma’, Sociology of Health and Illness 8 (1986): 26-43; David Taylor and

__________________________________________________________________
Michael Bury, ‘Chronic Illness, Expert Patients and Care Transition’, Sociology of
Health and Illness 29, No. 1 (2007): 27-45.
4
Juergen Habermas, The Theory of Communicative Action, Reasons and the
Rationalisation of Society, Vol. 1 (London: Heinemann, 1984), 105.
5
Rosalind Barbour and Jenny Kitzinger, Developing Focus Group Research
(London: Sage Publications, 2001), 10.
6
Immy Holloway and Stephanie Wheeler, Qualitative Research in Nursing
(London: Blackwell Publishers, 2002), 20; Egon Guba, et al., Handbook of
Qualitative Research (London: Sage Publications, 2000), 104; Mathew Miles and
Michael Huberman, Qualitative Data Analysis (London: Sage Publications, 1994),
172.
7
Busse Reinhard, et al., ‘Tackling Chronic Disease in Europe: Strategies,
Interventions and Challenge’,
http://www.euro.who.int/_data/assets/pdf_file/0008/96632/E93736.pdf.
8
Tom Shakespeare and Nick Watson, ‘The Social Model of Disability: An
Outdated Ideology? Exploring Theories & Expanding Methodologies: Where Are
We and Where Do We Need to Go?’, in Research in Social Science & Disability,
volume 2, eds. S. Barnarrt and Barbara M. Altman (Amsterdam: JAI, 2001).
Bibliography
Barbour, Rosalind, and Jenny Kitzinger. Developing Focus Group Research.
London: Sage Publications 2001.
Devins, Gerald, and Zachery Shnek. Multiple Sclerosis. Handbook of

Rehabilitation Psychology, edited by Robert G. Frank, and Timothy R. Elliot.
Washington, DC: American Psychological Association, 2000.
Guba, Egon, et al. Handbook of Qualitative Research. London: Sage Publications,

2000.
Habermas, Juergen. The Theory of Communicative Action, Reasons and the

Rationalisation of Society. Volume 1. London: Heinemann, 1984.
Holloway, Immy, and Stephanie Wheeler. Qualitative Research in Nursing.

London: Blackwell Publishers, 2002.
Miles, Mathew, and Michael Huberman. Qualitative Data Analysis. London: Sage
Publications, 1994.

__________________________________________________________________
Reinhard, Busse, Miriam Blumel, David Scheller-Kreinsen, and Annette Zentner.

‘Tackling Chronic Disease in Europe: Strategies, Interventions and Challenge’.
http://www.euro.who.int/_data/assets/pdf_file/0008/96632/E93736.pdf.
Scambler, Graham, and Anthony Hopkins. ‘Being Epileptic: Coming to Terms

with Stigma’. Sociology of Health and Illness 8 (1986): 26–43.
Scambler, Graham. ‘The Sociology of Chronic and Disabling Conditions: Assaults

on the Life World’. New Directions in the Sociology of Chronic and Disabling
Conditions, edited by Graham Scambler, and Sasha Scambler. London: Palgrave
Macmillan, 2010.
Shakespeare, Tom, and Nick Watson. ‘The Social Model of Disability: An

Outdated Ideology? Exploring Theories & Expanding Methodologies: Where Are
We and Where Do We Need to Go?’ In Research in Social Science & Disability.
Volume 2, edited by Sharon Barnarrt, and Barbara M. Altman. Amsterdam: JAI,
2001.
Taylor, David, and Michael Bury. ‘Chronic Illness, Expert Patients and Care
Transition’. Sociology of Health and Illness 29, No. 1 (2007): 27–45.
Thompson, Alan, and Xavier Montalban. ‘Diagnostic Criteria for Primary

Progressive Multiple Sclerosis: A Position Paper’. Annals of Neurology 47 (2000):
831–835.
Jane Grose is a Research Fellow in the Faculty of Health at the University of

Plymouth with ten years experience working with people with MS. Her post-
doctoral work has focussed on caring for people with cognitive impairment across
neurological diseases.
Jennifer Freeman is Associate Professor in Rehabilitation at the University of

Plymouth.
Heather Skirton is Professor of Health Genetics at the University of Plymouth.

Fear of a Living Death: A Foucauldian Discourse Analysis of
Chronicity, Terminal Illness and Euthanasia
Anne Ryan, Mandy Morgan and Antonia Lyons

Abstract
The experience of death and dying has been transformed over time by significant
advances in medical care and technologies from a short-term event to one that
usually involves a prolonged time of slow decline from chronic degenerative
conditions. The way we make sense of this modern form of protracted dying can
provide essential insights into us as human beings. This chapter utilises a
Foucauldian perspective to examine the processes through which the person
becomes categorised, objectified and transformed into the terminally ill subject.
The classification of such subjectivities can be seen to go hand in hand with the
development of modern bio-power and technologies of normalisation. Interviews
were carried out amongst the general population in Aotearoa/New Zealand to
explore how people made sense of terminal illness and euthanasia. The data
revealed constructions of death and dying that drew on discourses of quality of life
and fear of a living death. The consequences of positioning the terminally ill
subject within such constructions is considered in light of the way in which that
will inevitably shape their understanding and experience of themselves and the
world. Furthermore, the power implications of such discursive constructions are
considered in light of the current euthanasia debate.
Key Words: Foucault, euthanasia, terminal illness, discourse analysis, social

constructionist, chronicity.
*****
1. Introduction
It has been assumed that a death-denying attitude characterises our modern
society whereby death is hidden away from everyday experience and considered a
socially taboo subject. 1 However, I would suggest that it is not death per se that we
fear or seek to conceal but rather a protracted, agonising dying process often
referred to as a living death. It is hardly surprising then that the changing face of
death in our modern world has contributed to the hugely contentious nature of the
debate in society today about whether individuals have the right to choose when
and how to die. An insight into how we make sense of chronicity, terminal illness
and euthanasia can contribute much to this discussion but far more importantly it
can give us a better understanding of what it means to be human.
There has been considerable research focused on identifying people’s attitude
to dying and to the possible hastening of death. Public opinion surveys feature
widely in such studies but have indicated varying results. 2,3 A number of studies

50 Fear of a Living Death
__________________________________________________________________
have also found a large discrepancy between a patient’s hypothetical attitude
towards considering euthanasia and a practical desire to hasten death. 4 Similarly,
many studies have investigated a wide range of factors affecting the decision to
hasten death. 5 However, despite this wealth of research data we are still no closer
to understanding this desire for death.
Much of the research surrounding death and dying has been based on
mainstream methods that embrace positivism and empiricism. In contrast, this
study adopts a critical research focus by engaging with a social constructionist
paradigm influenced by the French theorist Michel Foucault in order to emphasise
not only the importance of language but also the structures of society and social
practices. The categories of constructions through which we attempt to make sense
of death and dying have the effect of transforming us as human beings into subjects
by what Foucault called ‘modes of objectification of the subject.’ 6 They are
associated with the emergence of bio-power early in the 17th century that was
focused on the regulation of all aspects of life. The process of normalisation was an
essential component of bio-power as in order to standardise and control life there
was a requirement for the identification of normal and abnormal. This, according to
Foucault, led in the nineteenth century to the development of apparatus such as
medicine and the law that could implement the necessary corrective procedures.
It is important to be aware that there will be a variety of possible constructions
of terminal illness and euthanasia, each of which will seek to represent them in a
certain way. It is of particular interest to identify those prevailing discourses that
are widely accepted as common sense as these will be linked to Foucault’s twin
concepts of knowledge and power. They give certain acts and practices society’s
stamp of approval by virtue of their apparent reasonableness and acceptability
while marginalising possible alternative pathways. 7 The purpose of this study was
to illuminate the ways in which people make sense of illness, dying, and euthanasia
in these contemporary times. Furthermore, the possible consequences of this talk
were examined in order to highlight the intrinsic connection between discourses of
death, knowledge, and power relationships.
2. Method
Participants were drawn from a convenience sample of the general population
and consisted of twenty-eight people, nineteen women and nine men. They
identified ethnically as Mãori (12), Pãkehã (15) and Indian New Zealander (1). The
age range was from twenty-four to eighty-four years old and a wide array of socio-
economic groups was represented. Informal, semi-structured interviews took place
either individually, in pairs, or small groups and these were audio-taped and
transcribed.

Anne Ryan, Mandy Morgan and Antonia Lyons 51
__________________________________________________________________
3. Analysis
The underlying research question of how people make sense of death and dying
and in particular end-of-life decisions such as euthanasia provided a focus in
undertaking coding of the interview transcripts. The analysis discussed in this
chapter is arranged around two internally consistent constructions of the
chronically or terminally ill person as a separate other and as a burden that were
evident in the data. These constructions were linked to the participants’ use of
discourses such as quality of life and fear of a living death to build or construct
their version of chronicity, terminal illness, and euthanasia.
Other
Participants used a construction that has been termed other to characterise the
dying person in such a way that it seemed to bear little resemblance to the person
they knew. A new identity is forged by practices that focus on the body as an
object and in doing so classify and isolate the terminally ill in much the same way
as Foucault has described the dividing practices in his first mode of objectification
that led to the creation of distinct groups and the corresponding objectification of
the subject. Thus, the terminally ill subject is categorised and divided off into a
new, shocking, unidentifiable entity.
Jimmy: Sometimes it’s not even drugs, it’s just the mental
processes aren’t working as they should and they don’t, you
know, they, they’re almost, they’re not themselves anymore,
they’re someone else.
In this extract Jimmy links this idea of self to the working of mental processes.
The apparent malfunction of this cognitive machinery has the effect of robbing the
self of its very identity so that they become ‘someone else.’ In a similar fashion
this construction of other is further developed in the following extract in which
Mia describes events around the death of her step-children’s mother. However, in
this instance the concept of physical appearance is used to explain how in terminal
illness she somehow ceases to be their mother:
Mia: He hated taking the kids up there every day and she was
still alive and she wasn’t like their mother any more. She got all
blown up with the...what do you...some harmony stuff that they
get, I don’t know like, what do you call those steroids and stuff?
And, and all bloated and big, fat and she would have hated it.
She was so particular about how she looked and stuff and she
looked awful, you know, and even Kristen who was only, I don’t
know how old she would have been, twenty, not quite twenty,

__________________________________________________________________
eighteen, you know and they said, “Doesn’t your mother look
peaceful?” And she said, “No, no she doesn’t, it’s not her”.
These constructions draw very much on a normative conceptualisation of life

that privileges effective mental capacity and a consistent physical exterior. In this
way the terminally ill subject who has been assessed and classified as diverging too
far from the norm of human life needs to somehow be managed. According to
Foucault the technologies of normalisation that are essential elements of bio-power
have effectively identified and isolated this other and now require associated
disciplinary techniques to deal with this social anomaly:
Jill: And it’s like they wheel them in, these old darlings on
stretchers, you know, and they’ve pushed food in one end and
clean up the mess at the other and they have, Larry would say
they’re past their use by date, you know, it’s so sad.
Marian: We don’t treat our animals like that, we // do not treat

our animals like that.
Jill: // 8 We would get rid of our animals.
Marian: We do not treat my cows like that.
Jill: Yeah, I don’t think, I think a majority of people if they saw a

picture of themselves like that and that was to be the way that
they //ended their life they wouldn’t want that.
Marian: Oh, put a bullet in them. No, put a bullet in them thank-
you, // that’s what I do to my cows.
Jill’s description of ‘them’ creates an undifferentiated grouping but she is able

to moderate the harshness of this collective terminology by the tender use of the
phrase ‘these old darlings.’ However, she continues to emphasise their lack of
worthwhile functioning with the view that sustenance is somehow wasted in a one
way journey of no purpose. This is further supported by her reference to Larry’s
consumer claim that ‘they’re past their use by date.’ The problem then of what to
do about this category of deviation from the norm of productive human life is
readily characterised as analogous to our humane approach to animals: ‘We don’t
treat our animals like that;’ ‘We would get rid of our animals;’ ‘Put a bullet in
them.’

__________________________________________________________________
Burden
Discourses of quality of life were seen as being at the very core of participants’
constructions of dying as a burden. Not only was the quality of life of the
terminally ill subject compromised but the burden that the dying placed on others
was also seen as impacting on their own quality of life:
Jimmy: Cause it’s not just the person who’s lying in the bed
who’s got a lack of quality of life, it’s all the people caring for
them. You’re at home, and you’re in a state where you can’t look
after yourself, someone’s gonna commit to looking after you and
it’s usually family members.
Dave: Yeah, it puts a lot of stress on them ah?
Jimmy: Lot of stress. Not, not just that person who’s looking
after them but their family as well. You know it takes a lot of
time out of your own family.
The discourse of quality of life is viewed here through a lens of dependence.

The inability to care for oneself with the corresponding need to have someone else
‘commit to looking after you’ is without question creating a burden. In contrast, the
dichotomous position of independence is accorded a more privileged standing:
Tia: And everyone else around you has to (.) 9 you know do
everything for you. I’d find that probably the worst part.
Pania: Same.
Interviewer: Why do you find that so difficult?
Tia: I don’t know, it’s just, I think being a burden on other

people is my main issue.
Katarina: I think cause I mean especially now days people are

more independent too. I mean I’ve always been relatively
independent and don’t want to be a burden on anyone else, don’t
want to rely on anyone else to you know, expect them to take
care of me. And also for them, if it’s a drawn out disease or
illness or something the other thing is for them as well cause
they, the families suffer.

__________________________________________________________________
The construction of dying as a burden and the significance and importance that
is ascribed to this concept of independence can be seen as a reflection of 21st
century neo-liberalism that values personal autonomy and responsibility or in terms
of Foucault’s bio-power, the need for self regulation and self care. Katarina’s
desire to care for one’s self, not to rely on anyone else and above all not to burden
others is very much part of this paradigm.
Furthermore, the highlighting of the burden on the family was particularly
salient in interviews with Mãori 10 participants. The family or whãnau is at the very
heart of Mãori society with each member intrinsically linked in such a way that the
sickness or dying of one individual will invariably affect the whãnau group as a
whole. As Ngata comments, ‘The family is considered only as strong as it’s
weakest member or link.’ 11 This traditional assumption of care in Mãori families is
very evident in the following extract:
Mikare: See and I think even further back, pre-European, cause

they were whãnau orientated, so therefore they carried you, if
you were mãuiui 12 they carried you, you were sick they looked
after you cause it was a whãnau unit //...
Ani: // It was whãnau time.
Mikare: It wasn’t just a family it was a whãnau unit and so

therefore the old people they weren’t a burden, they were our old
people [laugh] And you looked after them totally.
Mikare is at pains here to explain the depth of these whãnau ties and the
interdependence of each family member. In fact he struggles to find an equivalent
English word to convey the true sense of whãnau, ‘It wasn’t just a family it was a
whãnau unit.’ However, it becomes apparent that a real dilemma is posed for
Mãori participants as they are situated with one foot in Te Ao Mãori and the other
in Te 13 Ao 14 Hurihuri, 15 the changing world of the Pãkehã: 16
Pari: And I think the whãnau was a lot tighter //as well...
Mikere:// Tighter yeah.
Pari: ...back in the day where they, they had no problem with
taking on someone’s mãuiuitanga 17 , but these days you know
because we’re all sort of living our own lives we are sort of
looking at our own individual families now and saying for you
we don’t want you to carry us anymore and you know that
should be our choice not the iwi 18 choice but our choice not to

__________________________________________________________________
burden you even though that we know that the whãnau whãnui 19
would take on the responsibility of us that’s //not what we want
any more.
Ani: //It’s the burden.
There is a fundamental shift of emphasis here from the previous extract where
there is an all encompassing duty of care by the whãnau that is in no way
considered a burden, to a new dawn of individual responsibility, ‘We’re all sort of
living our own lives;’ ‘We don’t want you to carry us anymore.’ Mãori have been
dispersed from their traditional collective whãnau base through the mechanisms of
colonisation and urbanisation but despite these profound changes to family
structure and economic imperatives they have in many cases continued to identify
with and respect these customary practices. However, the huge impact of this
responsibility in our contemporary capitalist world is recognised by the participants
as they become entangled in a catch-22 situation.
4. Summary and Implications

This analysis has identified firstly a construction of death and dying that clearly
separates the person into a category of other whereby they are objectified and take
on the identity of a terminally ill subject. This construction draws on a discourse of
fear surrounding an extended period of suffering where the very essence of what
we take to be human is somehow lost. The second construction of burden works in
close co-articulation with that of other so that accounts of death and dying are
framed in such a way that burden is the inevitable consequence of being
transformed into a terminally ill subject. This construction of burden draws on
discourses of quality of life that are intrinsically linked to neo-liberal notions of
independence and personal autonomy. Talk around burden focuses not only on the
terminally ill subject but also on the wider connotations that the dying presents for
the family care-giving role. The problem that this poses for Mãori participants is of
particular concern.
The implications of the terminally ill subject being positioned in these
constructions of other and burden can be related to Foucault’s most important
mode of objectification, the way in which humans actively turn themselves into
subjects. 20 These constructions form the backdrop for the self-formation of a
subject who can choose to die. 21 Thus, a socially constructed category of body
creates a particular sort of subject who can freely accept the need for euthanasia as
a therapeutic solution to this problematic anomaly. In Foucauldian terms bio-power
ensures that not only will the expert gaze of medical technologies seek
normalisation but the individuals who have become constituted by that essence of
bodily construction will willingly subject themselves to euthanasia as a disciplinary
technique. In doing so they are able to construct a version of self that fulfils

__________________________________________________________________
societal ideals of a good death. This will undoubtedly function to normalise
euthanasia and it will become a reasonable expectation of those who as Larry puts
it are ‘past their use by date.’
Notes
1
Phillippe Aries, The Hour of Our Death (London: Allen Lane, 1981).
2
Ezekiel J. Emanuel, ‘Euthanasia and Physician-Assisted Suicide. A Review of the
Empirical Data from the United States’, Archives of Internal Medicine 162 (2002):
142-152.
3
Joanna Sikora and Frank Lewins, ‘Attitudes Concerning Euthanasia: Australia at
the turn of the 21st Century’, Health Sociology Review 16, No. 1 (2007): 68-78.
4
Ezekiel J. Emanuel, Diane L. Fairclough and Linda L. Emanuel, ‘Attitudes and
Desires Related to Euthanasia and Physician-Assisted Suicide among Terminally
Ill Patients and Their Caregivers’, The Journal of the American Medical
Association 284, No. 19 (2000): 2460-2468.
5
Barry Rosenfeld, et al., ‘Desire for Hastened Death Among Patients with
Advanced AIDS’, Psychosomatics 47, No. 6 (2006): 504-512; Tracy A.
Schroepfer, ‘Social Relationships and Their Role in the Consideration to Hasten
Death’, The Gerontologist 48, No. 5 (2008): 612-621.
6
Michel Foucault, ‘The Subject and Power’, in Michel Foucault: Beyond
Structuralism and Hermeneutics, eds. H. L. Dreyfus and Paul Rabinow (Chicago:
University of Chicago Press, 1982), 208.
7
Vivien Burr, Social Constructionism (London: Routledge, 2003).
8
Transcription symbol, // refers to accented nucleus.
9
Transcription symbol, () refers to micro pause.
10
Indigenous New Zealander.
11
Paratene Ngata, ‘Death, Dying, and Grief: A Maori Perspective’, in Death and
Bereavement around the World, eds. J. D. Morgan and P. Laungani (New York:
Baywood, 2005), 30.
12
It means ‘sick.’
13
It means ‘the.’
14
It means ‘world.’
15
It means ‘changing.’
16
It means ‘European.’
17
It means ‘sickness.’
18
It means ‘tribe.’
19
It means ‘wider family.’
20
Paul Rabinow, Introduction to The Foucault Reader, ed. Paul Rabinow (London:
Penguin, 1984), 3-29; Arthur W. Frank and Therese Jones, ‘Bioethics and the Later
Foucault’, Journal of Medical Humanities 24, No. 3/4 (2003): 179-186.

__________________________________________________________________
21
C. G. Prado, ‘Foucauldian Ethics and Elective Death’, Journal of Medical
Humanities 24, No. 3/4 (2003): 203-211.
Bibliography
Aries, Phillippe. The Hour of Our Death. London: Allen Lane, 1981.
Burr, Vivien. Social Constructionism. London: Routledge, 2003.
Emanuel, Ezekiel J. ‘Euthanasia and Physician-Assisted Suicide. A Review of the

Empirical Data from the United States’. Archives of Internal Medicine 162 (2002):
142–152.
Emanuel, Ezekiel J., Diane L. Fairclough, and Linda L. Emanuel. ‘Attitudes and
Desires Related to Euthanasia and Physician-Assisted Suicide among Terminally
Ill Patients and Their Caregivers’. The Journal of the American Medical
Association 284, No. 19 (2000): 2460–2468.
Foucault, Michel. ‘The Subject and Power’. In Michel Foucault: Beyond

Structuralism and Hermeneutics, edited by H. L. Dreyfus, and Paul Rabinow, 208.
Chicago: University of Chicago Press, 1982.
Frank, Arthur W., and Therese Jones. ‘Bioethics and the Later Foucault’. Journal
of Medical Humanities 24, No. 3/4 (2003): 179–186.
Ngata, Paratene. ‘Death, Dying, and Grief: A Maori Perspective’. In Death and
Bereavement around the World, edited by J. D. Morgan, and P. Laungani, 30. New
York: Baywood, 2005.
Prado, C. G. ‘Foucauldian Ethics and Elective Death’. Journal of Medical

Humanities 24, No. 3/4 (2003): 203–211.
Rabinow, Paul. Introduction to The Foucault Reader, edited by Paul Rabinow, 3–

29. London: Penguin, 1984.
Rosenfeld, Barry, William Breitbart, Christopher Gibson, Michael Kramer, Alexis

Tomarken, Christian Nelson, Hayley Pessin, Julie Esch, Michele Galietta, Nerina
Garcia, John Brechtl, and Michael Schuster. ‘Desire for Hastened Death among
Patients with Advanced AIDS’. Psychosomatics 47, No. 6 (2006): 504–512.

__________________________________________________________________
Schroepfer, Tracy A. ‘Social Relationships and Their Role in the Consideration to

Hasten Death’. The Gerontologist 48, No. 5 (2008): 612–621.
Sikora Joanna, and Frank Lewins. ‘Attitudes Concerning Euthanasia: Australia at

the Turn of the 21st Century’. Health Sociology Review 16, No. 1 (2007): 68–78.
Anne Ryan is from the School of Psychology, Massey University, Aotearoa/New

Zealand.
Mandy Morgan is from the School of Psychology, Massey University,

Aotearoa/New Zealand.
Antonia Lyons is from the School of Psychology, Massey University,

Aotearoa/New Zealand.

Health and Illness Representations in Patients with
Rheumatic Disease
Céu Sá and Abílio Oliveira

Abstract
This study is part of a larger research project and aims to understand how health
and illness are represented among male and female adults with rheumatic disease.
The data was collected by free word association and processed through factorial
correspondence analysis. Participants were questioned on several topics, such as
what they think and feel about their health and illness. Their perceptions were
analysed according to the age, sex and degree (or years) of illness. All participants
describe the illness as chronic, and as the main source of suffering and sadness
affecting their lives. The findings also indicated they are worried about their
weakness, vulnerability, and dependency from the others. We found out that
women were more likely than men to express negative emotions and emphasise
their limitations and disabilities. They also were more accurate in describing the
severe physical and functional problems of living with rheumatoid disease,
emphasising the difficulties in maintaining health and an independent lifestyle.
Women also consider that the pain and functional limitations seriously affect their
daily activities, like work, mobility and housekeeping. As part of the psychological
impact of a chronic illness, these patients feel frequently sad or discouraged, as if
they were different from other people. So, individual’s knowledge about the
representations of health and illness is always influenced by personal attributes like
age, sex, or personal experiences and is very important. The results of the patients’
thoughts and feelings about their health and illness (given their physical, functional
and emotional limitations) transmit important information for health professionals
working with patients with rheumatoid disease. This information can help them to
improve strategies to deal with this population, and provide more adequate care to
assist them facing everyday life with greater well-being.
Key Words: Health, illness, rheumatic disease, representations, perceptions,

adults.
*****
1. Introduction
The rheumatic diseases include over one hundred and twenty different diseases,
affecting especially the muscular skeletal structures. The most common are
osteoarthritis (OA) and rheumatoid arthritis (RA). 1 Their causes are frequently
unknown. They are progressive and incurable, with an uncertain prognosis. Almost
all rheumatic disorders are chronic and are a major cause of disability, 2 and OA 3
has a prevalence that increases steeply with age. 4

60 Health and Illness Representations in Patients with Rheumatic Disease
__________________________________________________________________
Rheumatic disease restricts people’s ability to perform social and occupational
roles. It is the single greatest cause of disability in the elderly, with more than 53%
of adults over the age of 65 years complaining because of this significant health
problem. 5 Nowadays, about 38% of the Portuguese population (circa 2.7 millions)
suffer from some form of rheumatic disease (about 1.7 million men, and 0.97
million women). 6 People with rheumatic disease may experience unpredictable
symptoms of severe pain, fatigue, stiffness, immobility, disability and
disfigurement. This illness frequently leads to major consequences for the person’s
life, affecting their social relationships, work and leisure. Moreover, the aging of
the Portuguese population associated to the increase of rheumatic diseases triggers
profound implications, especially in plans for caring for older people with
rheumatic problems. 7
Chronic diseases are defined as those that do not have a known cure, cause
general malaise, and affect the patient’s everyday life. It is urgent to understand the
perceptions of health and illness in patients with chronic or disabling conditions,
such as people suffering with rheumatic disease. 8 There are also expectations and
beliefs about health, and the effects of health care, in peoples’ responses to illness
and to the treatments that they subsequently receive. Inevitably, these expectations
and beliefs are linked to health and illness conceptualisations.
In this chapter we approached the representations of health and illness in
patients with chronic disease, focusing on those with rheumatic disease. We
considered some of peoples’ beliefs, images, and memories about health and
illness, and the way these are associated to emotions. 9
2. Main Objectives
We aimed to understand how health and illness are represented among adult
patients; examine how these representations may differ according to the age, sex
and degree of illness (time in years) of the participants; and, to verify how illness
can interfere in daily life and individual’s emotions.
3. Method
The present study was developed with a population of 129 participants with
rheumatic disease, 64% women and 36% men. The age range of the sample is 20 to
72 years old (21% between 20 to 39 years old, 53% between 40-64 years old, and
26% more than 65 years old). About 24% of the participants reported being ill for
less than five years, 38% were diagnosed between five and ten years ago, and 38%
have been ill for more than ten years. Independent variables considered are sex
(male or female), age, and number of years of illness. The dimensions of health
and illness, how illness could limit daily activities, and participants’ emotions are
the dependent variables.
Based on a short focus-group, where we listened to what participants generally
think and feel about pain, health, and illness, we developed a questionnaire

Céu Sá and Abílio Oliveira 61
__________________________________________________________________
including several open-ended questions, such as: what do you think about your
health?; how do you feel in face of your health?; what do you think about your
illness?; how do you feel in face of your illness?; what changes did the disease
force in your daily life?
The participants responded individually and anonymously to each one of the
questions with simple words or phrases associated to those stimuli. The data were
collected by free word association in a hospital and processed through factorial
correspondence analysis.
4. Results
When we asked the participants ‘What do you think about your health?,’ the
most frequent answers were ‘poor health’ (26%), ‘threatened,’ ‘fragile,’ ‘malaise’
and ‘affected’ or ‘impaired.’ Health is perceived as something that compromises
the participants’ life. Health is affected by the disease, which is a real threat,
making them feel weakness, unease or harmed. The conceptions of women and
men have some similarities; however, women tend to state they are affected by the
illness, and they are delicate and fragile, while men reported they think their health
is reasonable, committed, and precarious. Women expressed a more negative view
about their health, while men almost seem to accept their health condition, as if
they still feel strong enough to face it. Regardless of age group, the rheumatic
diseases imply changes in health and life, bringing malaise for all. In fact, the
experience of living with rheumatic disease can change one’s representations of
health.
The most common answers to ‘What do you think about your illness?’ point to
a personal situation that became chronic, or permanent. Illness is complicated and
causes pain, disability, limitations, discomfort, and important changes in daily life,
which are neither simple nor easy to adapt to or accept for many participants.
Women emphasise that the disease is a very painful process at all levels, leading to
disability or dependency of others; men give more relevance to the consequences
of the disease at a physical level, leading to body deformation or incapacity,
particularly with work. The older a patient is, the greater the tendency to represent
the illness negatively. Patients suffering from the illness for a longer time complain
more about dependence and making required changes in their life.
To the question ‘How do you feel in face of your health?,’ we found more
negative emotions (e.g. sadness, adapted, dependent, despondent/hopeless, limited,
inability, fear) than positive ones (e.g. well, tranquil). The participants were not
able to represent health without thinking of illness, and to what it emotionally
implies. Health and illness seem to be mixed, once the concept of health is affected
by pain or suffering. It is perceived as unbearable, uncomfortable, and
embarrassing, causing dependence, potential misunderstanding by others, and fear
of the future. However, some patients reveal a feeling of adaptation, with well-
being and tranquillity. Men have a more positive representation of health than

__________________________________________________________________
women, showing greater well-being and tranquillity, accepting their state and the
need for adaptation, despite their fear of what can happen to them. Women tend to
feel more dependent for their care and needs, sad, and unmotivated. The younger
participants seem to be more adapted and optimistic, in contrast with others
complaining about their dependency and uncertainty of their possible future.
The most frequent sentiment derived from ‘How do you feel in face of your
illness?,’ was dependent followed by adapted, despondent/hopeless, sadness,
inability, fear, revolted, acceptance, and malaise/worry. The participants feel
malaise with their illness and the suffering and disability it implies. The more
positive responses are mainly because men reported a more positive perception of
health than women, showing a need for adaptation and some hope for the future.
Women report feeling more ill, apprehensive, misunderstood, discouraged and
alone. Younger people are more optimistic, showing feelings of hope and
acceptance, while the older people discussed their dependency, sadness and feeling
miscomprehended by family and friends.
Faced with the question ‘What changes did the disease force in your daily
life?,’ the participants reported limited or affected by the rheumatic disease in even
the most common daily needs, such as walking, personal hygiene, dressing, getting
up, or combing their hair. All of them told us that the disease interfered with their
routines, especially in their work, and they underlined that they now are slower or
limited when performing many tasks. Consequently, they stopped doing or became
inefficient in performing some tasks and activities due to the pain they constantly
or frequently feel. Most of them revealed sad feelings, discouragement and some
depression symptoms. However, there are still some patients that stated they try to
maintain optimism and hope about their situation. The women, more than men,
indicated feeling misunderstood and alone, most often discussing the difficulty in
completing household tasks. Men reported more confidence in the efficacy of
treatments and medications, and in healthcare professionals’ capacity to help them
when they need more.
5. Conclusions
Rheumatic disease, and particularly the pain associated with it, is accompanied
by great personal suffering, with significant repercussions on individual, family,
social, and professional levels. Being a multidimensional phenomenon, this illness
affects people in cognitive, emotional, behavioural and physical areas. Living with
pain implies changes in the way a person represents the body and self. Regardless
of their age and the moment when the disease was diagnosed, most participants
showed difficulty living with this disease, which made them feel sad, disillusioned
and discouraged. The limitations or disabilities to some tasks may also imply a
strong psychological impact associated to feelings of failure, frustration and
depression. 10

__________________________________________________________________
With no cure for chronic conditions, especially in the case of OA and RA,
health care professionals are urged to explore the process that mediates health and
disease perceptions among these patients. Some patients know how to manage their
rheumatic disease very successfully. Our understanding of how they manage will
help us to develop interventions to assist people who show more difficulties. It is
also important to understand some shared beliefs among patients, as these have
implications on the interactions between health professionals and patients. The
person with rheumatic disease may regard pain as the most important indication of
the seriousness of her health or illness state, while health professionals may view
symptoms such as inflammation and joint damage as more important indicators of
disease severity. Such differences between these two perceptions may produce
some misunderstanding or disrupt communication.
Pain makes us question hope and all that we are. Facing it, we can react with
courage, adaptation, fear, or uncertainty. Pain cannot be resolved only at a physical
level, or by a magical cure, but rather with the knowledge that healthcare
professionals have about each individual and how they are affected. Knowing the
physical, functional, and emotional limitations of patients, health professionals
may improve their strategies to treat them, and provide adequate care to help them
to face everyday life and contribute to their well-being. This study is a step toward
helping health care professionals to better understand patients’ priorities.
Notes
1
Approximately 1% of the Portuguese population suffers from RA.
2
Mário Viana de Queirós, Reumatologia: Clínica e Terapêutica das Doenças
Reumáticas Vol. 2 (Lisboa: Lidel, 2002).
3
12% of people over the age of twenty five years old are affected; and 60% of
people over the age of sixty five years old have at least one joint with moderate to
severe deformations.
4
Augusto Faustino, ‘Aspectos da Reumatologia em Portugal - Relevância
Epidemiológica das Doenças Reumáticas em Portugal’, Revista Portuguesa de
Reumatologia e Patologia Osteoarticular 13 (2003): 4-6.
5
John Pimm and John Weinman, ‘Applying Leventhal’s Self-Regulation Model to
Adaptation and Intervention in Rheumatic Disease’, Clinical Psychology and
Psychotherapy 5 (1998): 62-74.
6
Boletim Informativo da Liga Portuguesa Contra as Doenças Reumáticas, Liga
Portuguesa contra as Doenças Reumáticas 13 (Lisboa: LPCDR, 2004).
7
Raquel Lucas and Maria Teresa Monjardino, ‘O Estado da Reumatologia em
Portugal’, Observatório Nacional das Doenças Reumáticas (Porto: Programa
Nacional contra as Doenças Reumáticas, 2010).

__________________________________________________________________
8
Juliet Corbin and Anselm Strauss, Unending Work and Care Managing Chronic
Illness at Home (San Francisco: Jossey-Bass, 1988).
9
Sally Thorne, Negotiating Health Care. The Social Context of Chronic Illness
(California: Sage, Newbury Park California, 1993).
10
Luis Gaião, ‘Impacto Médico, Económico e Social dos Reumatismos na 3ª
Idade’, Acta Reumatológica Portuguesa 54, No. 1 (1990): 3-9.
Bibliography
Boletim Informativo da Liga Portuguesa Contra as Doenças Reumáticas. Liga
Portuguesa contra as Doenças Reumáticas nº 13. Lisboa: LPCDR, 2004.
Corbin, Juliet, and Strauss, Anselm. Unending Work and Care Managing Chronic
Illness at Home. San Francisco: Jossey-Bass, 1988.
Faustino, Augusto. ‘Aspectos da Reumatologia em Portugal - Relevância

Epidemiológica das Doenças Reumáticas em Portugal’. Revista Portuguesa de
Reumatologia e Patologia Osteoarticular 13 (2003): 4–6.
Gaião, Luis. ‘Impacto Médico, Económico e Social dos Reumatismos na 3ª Idade’.

Acta Reumatológica Portuguesa 54, No. 1 (1990): 3–9.
Lucas, Raquel, and Maria Monjardino. O estado da Reumatologia em Portugal.

Porto: Observatório Nacional das Doenças Reumáticas, 2010.
Pimm, John, and John Weinman. ‘Applying Leventhal’s Self-Regulation Model to

Adaptation and Intervention in Rheumatic Disease’. Clinical Psychology and
Psychotherapy 5 (1998): 62–74.
Queirós, Mário. Reumatologia: Clínica e Terapêutica das Doenças Reumáticas

Vol. 2. Lisboa: Lidel, 2002.
Thorne, Sally. Negotiating Health Care. The Social Context of Chronic Illness.
Newbury Park, CA: SAGE, 1993.
Maria do Céu Sá is a Professor of Nursing at the Department of Rehabilitation

Nursing, RGN in Higher Nursing School, Lisbon, Portugal. She has published
several papers on rheumatic diseases including ‘Conviver com Artrite Reumatóide’
and ‘Sobre Viver com Artrite Reumatóide. O Impacto da Doença na Qualidade de
Vida da Pessoa. Contributos para a Enfermagem.’

__________________________________________________________________
Abílio Oliveira is an Assistant Professor, at Instituto Universitário de Lisboa

(ISCTE-IUL), Lisboa, Portugal, and a Researcher, at Centro de Investigação em
Sistemas e Tecnologias de Informação Avançados (ADETTI-IUL), Lisboa,
Portugal. He is the author of several books including ‘O Desafio da Vida,’ ‘Ilusões
na Idade das Emoções - Representações Sociais da Morte, do Suicídio e da Música
na Adolescência’ and ‘O Desafio da Morte.’

Managing Multiple Chronic Illnesses: Narratives of Puerto
Rican Latinos Living in the U.S.
Louise Reagan
Abstract
Research with Latinos and chronic illness (CI) has typically focused on self-
management or personal perspective about a single CI, though Puerto Rican
Latinos frequently live with multiple CIs. This qualitative pilot project aimed to
gain understanding of how Puerto Ricans manage multiple CIs to provide insight
for health care providers (HCP) caring for this ethnic group. Two female and one
male bilingual Puerto Rican adults aged 32-59 years were recruited from an urban
primary care centre in the New England region of the United States (U.S.).
Participants had Type 2 diabetes mellitus (T2DM) and at least one other CI.
Participants were asked about care of their diabetes and other CIs. Narratives were
analysed using Riessman’s method of thematic analysis. Narrative themes and
implications for practice are presented.
Key Words: Chronic illness, Type 2 diabetes, Latino(s), self-management,

Narrative Analysis, qualitative research, culture, ethnicity.
*****
1. Introduction
Qualitative research related to CI and Latinos has focused on exploring beliefs 1
and phenomena of self-management, 2 particularly with diabetes. Historically,
diabetes research has focused on all Latinos or Mexicans as a subgroup. Research
across Latino subgroups disregards the diversity of U.S. Latinos. 3 The Puerto
Rican Latino subgroup has been studied less than other subgroups in CI research,
and most existing studies are on a single CI.
Heterogeneity has been reported in the management of diabetes for diverse
Latino subgroups, 4 and these differences may be applicable to the management of
multiple CIs. Patient narratives are a useful tool to elicit patients’ stories, but there
have been no narrative studies on CI with Latino persons. The purpose of this
narrative analysis is to shed light on the personal experience of U.S. Puerto Ricans
managing multiple CIs.
2. Methods
One male (age 59) and two female (age 32 and 46) bilingual Puerto Ricans
participated in this study. Participants had Type II diabetes plus one or two
additional CIs. All were single and two completed high school education. Two had
a full time job, and the third had a part time job.

68 Managing Multiple Chronic Illnesses
__________________________________________________________________
Riessman’s thematic analysis was used in this pilot study. 5 This method
includes give levels of narrative representation. In the first, attending, participants
reflect to make meaning of phenomena. The second level, telling, refers to the
‘performance of the narrative.’ 6 During semi-structured tape recorded interviews,
participants were asked: ‘Please tell me your story of how you take care of or
manage your diabetes and other chronic illnesses.’ Transcribing, the third level,
refers to how the spoken language is converted to written text. In level four,
analysing, the researcher reviews transcripts for themes, patterns, differences, and
‘metastory’ or summation. The fifth level is reading, or creating a written report for
the researcher and others to read.
3. Thematic Analysis and Discussion

A. Life Pre-CI
All participants’ stories began with the onset of CI and they spoke of a time
before they had a CI. Each had fond memories free of medications, finger sticks,
and guilt or fear of certain foods. Although smiling as they reminisced, they
quickly moved on from this defunct place to share their stories of living in the
present.
B. It’s All about the Diabetes

Although participants discussed other illnesses, the T2DM and its associated
complications were fundamental to all narratives. This phenomenon has been
described in the literature as the theme of ‘centrality’ or the degree to which the
patient’s diabetes assumes a central role in their larger life story. 7 Some
researchers have stated that Hispanics ‘experience their diabetes holistically.’ 8 The
following excerpt illustrates the assiduity given to diabetes over CIs such as
cirrhosis, hyperlipidaemia, and hypertension:
I get up. I take my pill sometimes. I eat, I take my pill then I

check my blood sugar. Ah - you get used to that. The first day
you feel the pinch but after that you get used to it (referring to
checking finger stick glucose at home). I take like 10 pills. I am
used to it (medications) already (laughs). I take it and sometimes
I do not know how to say it but it is just like...routine. I take the
pill and the pills do not bother me. I take care of my diabetes. I
take my pills, eat healthier, do a little bit of exercise when I can.
That is my diabetes.
C. Impact of CI on Life
CI management impacted many aspects of life, whether the diabetes-related
blurred vision caused difficulty watching TV or the morbid obesity caused joint
pain. One female participant described walking on a regular basis to lose weight

Louise Reagan 69
__________________________________________________________________
and control her diabetes. ‘I have been trying to walk more lately; I walk six blocks
up and down but by the time I am finished, I am suffocating.’ Although she enjoys
walking, at three hundred pounds, walking can bother her knees and impact her
breathing. Qualitative research on T2DM repeatedly reports that this CI affects
daily life in multitudinous ways. 9
D. The ‘Not-So-Hum-Drum’ of Daily Medication Use

All three participants viewed medication taking as a significant component of
their CI management. Additionally all three indicated that sometimes they forget to
take these medications. Unlike the self-reported acknowledgement of not checking
the finger sticks, none of the participants communicated an intentional omission of
medications.
Research has found that for Hispanic men the diabetes self-care behaviour of
medication taking was perceived more favourably than the undertaking of lifestyle
changes. 10 The participants in the current study conveyed these same views.
Although medication taking was not without challenges, all seemed to have less
difficulty with medication taking than that of making lifestyle changes. Research
has reported that Latinos often view medication a major form of treatment for
T2DM and that medications can be the key to symptom resolution for CI. 11
Prior research further suggests that medication non-adherence may be
influenced by financial barriers affecting the cost of medication, the presence of
fatalistic attitudes, or the adverse effects of medications. 12 None of these attitudes
or barriers were present for the older male participant in this study. He regarded
medication taking as a routine uneventful task of CI management. This was not the
case for the younger two female participants, both of whom had a shorter duration
of illness. Both discussed difficult experiences with adverse medication effects.
Nonetheless, medication taking was a central and accepted aspect of CI
management. One participant stated:
I take three pills a day, two for the diabetes and one for the high
blood pressure. Yes, I have a hard time taking them because the
pills are very big and they are very difficult to swallow. I take
1000mg of Metformin in the morning, and 1000mg at night, then
I take 20mg of Lisinopril, which is controlling my blood
pressure. It is a little bit difficult for me, sometimes I forget to
take my pills. At the beginning I could not get used to taking
them, they were making me sick; I was losing a lot of weight, a
lot of diarrhoea. But my medication is adjusted now.
E. Living with Uncertainty

This theme incorporates the participants’ uncertainty associated with the
diagnosis of diabetes, such as, ‘I feel fine, do I really have it?’ The theme also

__________________________________________________________________
deals with the potential for complications from their CIs. Again the two younger
female participants struggled with the uncertainty and chronicity of diabetes. The
participants seemed to question if diabetes was truly permanent. For example, one
participant reflected:
I am thinking that if I do get into a diet that maybe I could get rid
of the diabetes. However, I don’t think that’s so…is it? Because
I lost a lot of weight since I found out I am a diabetic and I’m
still diabetic. Some people manage it on their diet, why can’t I do
that?
It has been reported in the literature that Hispanics live in fear of developing
illness complications, especially for diabetes. The older male participant
communicated acceptance of the anticipated consequences of the T2DM, while
both females weaved fear of complications into their:
I’ve seen people with amputated legs and toes, and that’s because
they don’t take care of what they need to do. Either they eat too
much sugar or, I don’t know, a whole bunch of things that they
are supposed to do. I don’t want that to happen to me.
F. Fear of Insulin and Fingersticks

This theme relates to T2DM rather than comorbid CIs. Fear of insulin and
performing finger sticks were found to be common themes for the two younger
participants, as in past studies. 13 Although they recognised the importance of this
self-care skill, it hurt too much to adhere to this task. Two of the three participants
remarked that their HCPs would be angry with them for not checking the ‘finger
stick.’ Despite the consequences, insulin was viewed as a last resort for the two
female participants.
I feel I can’t get up from bed or my mouth is dry and I’m thirsty -
I know that something is wrong. My body is asking for too much
water so my sugar is high. Once I notice this, there I check it.
Sometimes it’s 250-400 or sometimes it’s 124. But it’s not
something I check a lot - it hurts too much. As long as I do not
have to stick [inject insulin], I’m good.
G. Do This, and Don’t Do That or Else

This pervasive theme illustrated the superficiality of the participants’
knowledge of CI and their interpretation of the education they may have received.
The participants wanted longer and more frequent appointments with the HCP and
indicated dissatisfaction with barriers to obtaining appointments. All participants

Louise Reagan 71
__________________________________________________________________
narrated stories that indicated the need for more information and identified current
education as related to consequences of behaviour, especially for T2DM. For
example:
The doctor is pretty informational, he asks me if there have been

any changes, and makes sure that I go for my eyes once a year.
The doctor explains that if I don’t do this, than this can happen.
H. Treasuring Social Support

Friends or significant others were important for all participants, but none
indicated family as support. Whether it was reminding the participants to take their
medications, providing encouragement to exercise or to attend a doctor’s visit,
friends were part of the participants’ CI management. Latinos oftentimes view
friends as part of an extended family, 14 so it may be important for HCPs to inquire
about friends and family when working with Latino patients. One participant spoke
of a co-worker’s support:
My co-worker reminds me to take my pills; it shouldn’t be so

because I am a grown woman…On Saturdays and Sundays it is
the first thing I have to do in the morning, because I am not at
work, she is not there to remind me.
I. Declarations of Strength
Participants expressed strength as gained or embodied from multiple sources.
from God, friends, children, or inner strength. One expressed inner strength: ‘You
have to do what you have to do.’ The older male participant was the only to refer to
God, when he spoke of strength through depression. ‘The only one who really
knows what is next is God [he points and looks upward]. Yes - he helps me a lot’.
The younger female participants expressed nonspiritual sources of strength.
One indicated the strength manage her illness was driven by love for her two
daughters, as well as triumph over past drug use. ‘They still need me. That keeps
me going, it may seem strange, but I changed my life for them and I am going to
continue to do good.’ This aligns with research by Dingley and colleagues, 15 who
found prior experiences were a dimension of inner strength among older Hispanic
women with CI.
4. Conclusions and Implications for Practice

Storytelling through narrative analysis provides culturally relevant information
not otherwise available to HCPs. For these Puerto Rican Latinos, diabetes
management takes centre stage over all other CIs and managing CI becomes like a
second job. Common themes are medication and preference of it over insulin in
diabetes management. Participants fear complications though feel well much of the

__________________________________________________________________
time; however, feeling well leads to ambiguity and uncertainty about the course of
illness, especially T2DM. All have times of forgetting about the illness and its
management, but reminders of the CI, its consequences, and sources of strength
help them to remember and move forward. They remember the past fondly, and
optimistically move ahead adapting to the changes CI brings.
Participants desire greater education and more support from HCPs, hoping for
the best and preparing for the worst outcomes in managing CI. As emphasised in
the literature, education must be appropriate to the education and literacy abilities
of all persons, particularly for Latino patients with lower socioeconomic status.
Primary care initiatives need to increase the number of HCPs committed to
working with this population. Open dialogue should be a goal for all visits in order
to enhance our understanding of Latino individuals. If HCPs commit to this level
of communication and education, the health of the Latino persons we serve will
improve.
HCPs hold an important position in the lives of Latinos with CI. However, we
may not be meeting the needs for all persons with CI. Moving the dialogue beyond
fear of consequences and use of insulin may help Latino patients, especially in
management of T2DM.
Notes
1
Susan C. Weller, et al., ‘Latino Beliefs about Diabetes’, Diabetes Care (1999):
722-728; Linda M. Hunt, Miguel Valenzuela and Jacqueline Pugh, ‘Porque me
Toco a Mi? Mexican American Diabetes Patients’ Casual Stories and Their
Relationship to Treatment Behaviors’, Social Science Medicine (1998): 959-969;
Elena Carbone, et al., ‘Diabetes Self-Management: Perspective of Latino Patients
and Their Health Care Providers’, Patient Education and Counseling (2006): 202-
210; Erin Hatcher and Robin Whittemore, ‘Hispanic Adults Beliefs about Type 2
DM: Clinical Implications’, Journal of American Academy of Nurse Practitioners
(2007): 536-545.
2
Carbone, et al.; Arlene Caban, et al., ‘It Feels like Home When You Eat Rice and
Beans: Perspectives of Urban Latinos with Diabetes’, Diabetes Spectrum (2008):
120-127.
3
Kurt Organista, Solving Latino Psychosocial and Health Problems Theory,
Practice and Populations (New Jersey: John Wiley and Sons Inc., 2007), 3-36 and
65-90.
4
Arch G. Mainous III, et al., ‘Acculturation and Diabetes among Hispanics:
Evidence from the 1999-2002 National Health and Nutrition Examination Survey’,
Public Health Report (2006): 60-66.
5
Catherine Koehler Riessman, Narrative Analysis (Newbury Park: Sage, 1993), 8-
70.

Louise Reagan 73
__________________________________________________________________
6
Ibid., 9.
7
Paul Haidet, Tony L. Kroll and Barbara F. Sharf, ‘The Complexity of Patient
Participation: Lessons Learned from Patients’ Illness Narratives’, Patient
Education and Counseling (2006): 323-329.
8
Loretta Heuer and Cheryl Lausch, ‘Living with Diabetes: Perceptions of Hispanic
Migrant Farm Workers’, Journal of Community Health Nursing (2006): 49-64.
9
Catherine A. Chesla, et al., ‘Difference in Personal Models Among Latinos and
European Americans: Implications for Clinical Care’, Diabetes Care (2000): 1780-
1785; Haidet, et al., ‘The Complexity of Patient Participation: Lessons Learned
from Patients’ Illness Narratives’; Hatcher and Whittemore, ‘Hispanic Adults
Beliefs about Type 2 DM: Clinical Implications’.
10
Luis D. Rustvelt, et al., ‘Adherence to Diabetes Self-Care Behaviors in English
and Spanish Speaking Hispanic Men’, Patient Preference and Adherence (2009):
123-130.
11
Gay Becker, et al., ‘Knowledge and Care of Chronic Illness in Three Ethnic
Minority Groups’, Family Medicine (1998): 173-178.
12
S. Benavides-Vaello, et al., ‘Using Focus Groups to Plan and Evaluate Diabetes
Self-Management Interventions for Mexican Americans’, The Diabetes Educator
(2004): 238-256.
13
Hatcher and Whittemore, ‘Hispanic Adults Beliefs about Type 2 DM: Clinical
Implications’.
14
Organista, Solving Latino Psychosocial and Health Problems Theory, Practice
and Populations, 3-36 and 65-90.
15
Katherine Dingley and Gayle Roux, ‘Inner Strength in Older Hispanic Women
with Chronic Illness’, Journal of Cultural Diversity (2003): 11-22.
Bibliography
Becker, Gay, Yewoubdar Beyene, Edwina Newsom, and Denis V. Rogers.
‘Knowledge and Care of Chronic Illness in Three Ethnic Minority Groups’.
Family Medicine (1998): 173–178.
Benavides-Vaello, Sondra, Alexandra Garcia, Sharon Brown, and Maria Winchell.

‘Using Focus Groups to Plan and Evaluate Diabetes Self-Management
Interventions for Mexican Americans’. The Diabetes Educator (2004): 238–256.
Caban, Arlene, Elizabeth A. Walker, Severa Sanchez, and Maria Mera. ‘It Feels
Like Home When You Eat Rice and Beans: Perspectives of Urban Latinos with
Diabetes’. Diabetes Spectrum (2008): 120–127.

__________________________________________________________________
Carbone, Elena, Milagros Rosal, Midali Torres, Karen V. Goines, and Odilia I.
Bermudez. ‘Diabetes Self-Management: Perspective of Latino Patients and Their
Health Care Providers’. Patient Education and Counseling (2006): 202–210.
Chesla, Catherine A., Marilyn M. Skaff, Robert J. Bartz, Joseph T. Mullan, and
Laurence Fisher. ‘Difference in Personal Models among Latinos and European
Americans: Implications for Clinical Care’. Diabetes Care (2000): 1780–1785.
Dingley, Catherine, and Gayle Roux. ‘Inner Strength in Older Hispanic Women
with Chronic Illness’. Journal of Cultural Diversity (2003): 11–22.
Haidet, Paul, Tony L. Kroll, and Barbara F. Sharf. ‘The Complexity of Patient
Participation: Lesson Learned From Patients’ Illness Narratives’. Patient
Education and Counseling (2006): 323–329.
Hatcher, Erin, and Robin Whittemore. ‘Hispanic Adults Beliefs about Type 2 DM:
Clinical Implications’. Journal of American Academy of Nurse Practitioners
(2007): 536–545.
Heuer, Loretta, and Cheryl Lausch. ‘Living with Diabetes: Perceptions of Hispanic
Migrant Farm Workers’. Journal of Community Health Nursing (2006): 49–64.
Hunt, Linda M., Miguel Valenzuela, and Jacqueline Pugh. ‘Porque me Toco a Mi?
Mexican American Diabetes Patients’ Casual Stories and Their Relationship to
Treatment Behaviors’. Social Science Medicine (1998): 959–969.
Mainous III, Arch, Azeem Majeed, Richelle Koopman, Richard Baker, Charles
Everett, Barbara Tilley, and Vanessa Diaz. ‘Acculturation and Diabetes among
Hispanics: Evidence from the 1999-2002 National Health and Nutrition
Examination Survey’. Public Health Report (2006): 60–66.
Organista, Kurt. Solving Latino Psychosocial and Health Problems Theory,

Practice and Populations. New Jersey: John Wiley and Sons Inc., 2007.
Riessman, Catherine Koehler. Narrative Analysis. Newbury Park: Sage, 1993.
Rustvelt, Luis D., Valory N. Pavlik, Maria L. Jibaja-Weiss, Kimberly N. Klein,

Travis J. Gossey, and Robert J. Volk. ‘Adherence to Diabetes Self-Care Behaviors
in English and Spanish Speaking Hispanic Men’. Patient Preference and
Adherence (2009): 123–130.

Louise Reagan 75
__________________________________________________________________
Weller, Susan, Roberta D. Baer, Lee M. Patcher, Robert T. Trotter, Mark Glaser,
Javier E. Garcia, and Robert E. Klein. ‘Latino Beliefs About Diabetes’. Diabetes
Care (1999): 722–728.
Louise Reagan is an Adult Nurse Practitioner at Hartford Hospital and faculty

member at the University ff Connecticut School of Nursing, Storrs, Connecticut.

Section 3
The Visual and Virtual Stories

Children’s Experience of Living with Cancer
Lígia Lima and Marina Lemos
Abstract
Literature has been acknowledging that cancer is a life-threatening disease that
causes a major impact on children’s psychological well-being. This study sought to
learn more about children’s experiences of living with cancer through analysis of
their drawings. In addition the study allowed the understanding of whether
drawings are useful to know more fully the inner experience of children with
cancer and the impact of cancer in their lives. A group of 27 children hospitalised
in an Oncologic Unit and a comparison group of 29 healthy children participated in
the study. In order to elicit expressions representative of their experience with
cancer each child was handed a sheet of paper and asked to draw two persons, one
healthy and one ill. Children could also write text on the paper. Drawings were
analysed in relation to emergent themes and also using the CH:D coding manual by
Clatworthy, Simon and Tiedman 1 to assess children’s level of anxiety, and the
presence of indicators of emotional disturbance. Moreover through the content
analysis of texts, this study identified the more salient aspects of the experience of
being healthy and being ill, from the children’s perspective. The study supported
drawings as an informative resource for capturing experiences and emotions of ill
children. Confirming previous research, results from content analysis evidenced
children’s longing for normalcy as a major theme present in children’s experience
of illness. Significant differences between children’s drawings of the ill and
healthy persons seem to reflect the contrasting experience of health and illness.
Generally, this study emphasises the idea that living with cancer severely
challenges children’s sense of well-being.
Key Words: Cancer, children, drawing, emergent themes, level of anxiety, well-
being.
*****
1. Introduction
Despite the increase in survival rates, 2 children suffering from cancer and their
families still face many demands that make their life quite challenging and full of
experiences of suffering. 3 The exposure to many stressors such as repeated
intrusive procedures, frequent hospitalisation, chemotherapy, isolation, immobility
and restriction of normative life activities, their family’s apprehension and
concerns, make these children particularly vulnerable to anxiety and other
emotional disturbances. 4
The daily life of children with cancer is frequently altered and ‘longing for
normalcy’ is a common response. 5 For these children, being normal is also

80 Children’s Experience of Living with Cancer
__________________________________________________________________
associated with being healthy, with doing activities like going to school, being with
friends, playing freely in the outside. 6 In a meta-synthesis by Epstein and
collaborators, 7 children with cancer were found to have a special perspective in
relation to the definition of health that the authors defined as being ‘on the outside
looking in,’ as children could recognise in others what constituted health but were
unable to recognise it in their own self.
Therefore the comprehension of the subjective experience of living with cancer
in childhood is a major component of the basic information needed to develop
interventions aimed to improve these children’s well-being and quality of life.
Drawing is one of many possible methods for assessing the emotional impact of
illness and hospitalisation, and has the strength of facilitating the communication
of thoughts and feelings. Many studies have shown that drawing is a projective
task that promotes the expression of attitudes and emotions 8 and enhances
communication about stress and coping in ill children, 9 and Human Figure
Drawings (HFDs) are among the most frequent drawing assessment tools and have
already been used to evaluate chronically ill children’s self-perception related to
their illness, 10 their experience with pain, 11 as well as their emotional status. 12
As part of a wider research project, this study sought to learn more about
children’s experiences of living with cancer and to understand whether drawings
are useful to know more fully the inner experience of children with cancer. In order
to elicit expressions representative of their experience with cancer each child was
asked to draw two persons, one healthy and one ill, which were then analysed and
compared.
The specific goals of the present study were: (a) to explore and compare the
themes present in the two drawings of children with cancer, specifically in the ill
person drawing and in the healthy person drawing, (b) to identify anxiety and
pathological indices in the drawings of children with cancer, (c) to understand
whether the children’s experience of living with cancer is projected in the ill
person drawing and whether this experience invades also the healthy person
drawing.
2. Participants
The clinical sample of the present study consisted of 27 children aged 7 to 13
(14 boys and 13 girls) and hospitalised in an Oncologic Unit. A paired sample
(matched on sex and age) of 29 healthy children was used as controls. These
children were recruited in kindergarten or schools in the same district of the
oncologic centre.
3. Procedure
In order to elicit expressions representative of their experience with cancer each
child was handed in a sheet of paper and asked to draw two persons, one healthy
and one ill. This study is part of a larger research project using the ‘Draw and

Lígia Lima and Marina Lemos 81
__________________________________________________________________
Write’ technique, 13 so children were told that they could also write text on the
paper.
Drawings were analysed in relation to emergent themes and also using the
CH:D coding manual 14 to assess children’s level of anxiety, and the presence of
indicators of emotional disturbance. According to CH:D’s manual, the scoring of
the drawing is divided in three sections: Part A contains 14 items scored on a scale
of 1 to 10, with 1 indicating the lowest level of anxiety and 10 the highest (in this
study we only used 13 items). Part B is scored by giving additional points for the
presence of any of eight items presumed to be pathological indices. Part C is a
gestalt rating on a 1 to 10 scale and 1 indicates coping or low anxiety whereas 10
indicates disturbance or high anxiety. A total score can be obtained by adding the 3
scores. The CH:D validity was already studied in Portuguese hospitalised children
with an inter-rate agreement of 84.97 per cent. 15
4. Results
Drawings were first analysed focusing on the identification of general themes,
involving an interpretation of the atmosphere of the scene portrayed, type of
emotions, appearance of human figure, and behaviours and activities demonstrated
and the presence of equipment or special objects. The content categories identified
were as follows:
Table 1 - General content themes of the children’s ill person drawing and healthy
person drawing
ILL PERSON DRAWING HEALTHY PERSON

DRAWING
CATEGORIES TYPICAL DESCRIPTORS TYPICAL DESCRIPTORS
Setting Indoors; hospital, bedroom Open air; sun; clouds,
vegetation; football field
Posture/ facial Static person; arms crossed; Movement; open arms; smile
expression/ lying in bed; sad; frightened;
emotions crying
Clothing Night gowns; slippers. Outerwear; shoes; handbags,
accessories
Behaviours Risk behaviours as smoking; Healthy behaviours as eating
and symptoms coughing; hair loss and cap; proper food; playing football
broken legs and crutches;
Equipment Hospital equipment; bed; mask; Ball; playground, swing
IVs; perfusion
The drawings of the ill person tend to focus on the negative impact of the
disease, both physically and emotionally, and on the restrictions imposed by the
disease, namely by the drawing of settings like hospital, lying in bed and the

__________________________________________________________________
administration of IVs - being tied to a machine as illustrated in Table 1. By contrast
the drawings of the healthy person focus on well-being as expressed in positive
facial and body expressions and in the potential for pleasant activities like play and
being in the outside.
Children’s level of anxiety and pathological indices were assessed using CH:D
coding manual. 16 Descriptive results are shown in table 2.
Table 2 - Descriptive results of the CH:D scoring for the healthy and the ill person
drawings
CH:D items N Min. Max. Mean sd

Part A
Position of person 27 1 8 3.52 2.486
Portrayal of action/life 27 3 8 5.63 1.548
Length of person 27 1 8 3.41 2.135
Width of person 27 1 6 2.26 1.023
Facial expression 27 1 9 6.19 3.235
Eyes/pupils 27 1 9 4.56 3.355
Size person in environment 27 1 8 2.81 2.370
Colour predominance 27 3 10 8.78 1.928
Number of colours used 27 2 10 8.07 2.674
Amount of paper used 27 1 10 6.85 2.670
Placement of drawing in paper 27 1 8 1.93 2.037
Quality of crayon strokes 27 1 8 3.78 1.368
Hospital equipment 27 1 10 2.56 2.259
Part B
Omission of one body part 27 0 5 0.37 1.334
Exaggeration of a body part 27 0 5 0.19 0.962
Deemphasis of a body part 27 0 0 0.00 0.000
Distortion of body 27 0 10 1.48 3.620
Omission of two or more parts 27 0 10 4.44 5.064
Transparency 27 0 10 2.22 4.237
Mixed profile 27 0 0 0.00 0.000
Shading 27 0 10 3.33 4.804
Part C
Gestalt 27 1 8 4.74 1.852
Total 27 52 114 77.11 14.677
As can be observed in Table 2, in general the scores of part A were not very
high with the exception of the items related to: facial expressions, the amount of
paper used, and the use of colour. All these results seemed to reflect a lack of
energy or investment in the task of drawing, maybe due to the fatigue or other
physical or psychological symptoms of cancer.

__________________________________________________________________
In part B, the pathological indices more present were the omission of two or
more body parts and shading. The first item indicates denial or concerns about
body parts while shading usually represents anxiety related to a specific body part
or, when more present in the drawing, overall anxiety. Part C, which assesses the
overall impression that the drawing projects were quoted near to the mean point of
the Likert scale and also indicates the presence of moderate anxiety and ineffective
coping.
Finally, according to the reference values provided by Clatworthy and
collaborators, 17 the Total score found indicates an average level of anxiety, which
would justify a regular therapeutic intervention to help the child cope with the
disease.
In order to understand if the child with cancer projected himself/herself in the
ill person drawing, we compared the scores obtained in the ill person drawing with
the scores obtained in the healthy person drawing (Table 3). Comparisons were
performed using a Paired t-test (normal distribution of scores was previously
tested). The results confirmed our expectation, that the ill person drawings scores
were significantly higher than the healthy person drawings scores indicating higher
levels of anxiety and emotional disturbance.
Table 3 - Comparison of scores of healthy person drawing with the scores of ill
person drawing
Healthy person drawing Ill person drawing

Mean Sd Mean sd t df p
Part A 48.67 12.37 60.33 11.11 5.538 26 0.000
Part B 6.66 8.99 12.03 8.91 2.740 26 0.011
Part C 2.70 2.38 4.74 1.85 4.753 26 0.000
Total 58.04 18.63 77.11 14.68 5.569 26 0.000
As mentioned before, another objective was to understand if children’s

drawings seemed to reflect the child’s general ill-being, by having indicators of
emotional disturbance present across both the healthy person drawing and the ill
person drawing. To achieve this goal, we compared the healthy person drawings
scores from the clinical sample with the healthy person drawings scores of a paired
sample of healthy children using a t-test (Table 4). Results revealed that children
with cancer (clinical sample) differed from their healthy controls in all scores with
the exception of the Part B’s score, which measures the presence of pathological
indices. In all other scores, children from the clinical sample obtained higher
values compared to the children from the school sample, indicating the presence of
higher levels of anxiety.

__________________________________________________________________
Table 4 - Comparison between scores of clinical sample and school sample of in
healthy person drawing (T test)
Clinical sample School sample

Mean sd Mean sd t df p
Part A 48.67 12.37 39.55 11.98 2.801 54 0.007
Part B 6.666 8.98 5.000 6.55 0.797 54 0.429
Part C 2.7 2.38 1.00 0.00 3.583 54 0.000
Total 58.4 18.63 45.55 12.91 2.932 54 0.005
5. Discussion
Results support that drawings can serve as an informative resource for
capturing experiences and emotions of children with cancer. The drawings of the
ill person were quite illustrative of the children’s suffering, and tended to focus on
the restrictions imposed by the disease and revealed a more frequent representation
of negative feelings. The healthy person drawing was more representative of the
child’s normal life activities for which children with cancer seem to long. There
was a convergence between the themes found in the analysis of these drawings and
the aspects identified in other studies in which children’s writings were also
analysed. 18 However, drawings allowed the identification of additional aspects of
the experience of being ill, not evidenced through the children’s writings. In
particular, the use of CH:D procedure for the analysis of drawings allowed us to
identify the presence of a low level of energy and general motivation, as well as
more specific feelings, concerns, and anxiety about body image or a specific body
part, as reflected in the presence of pathological indices like omissions and
shading.
As mentioned before, the children’s drawing of the ill person was specially
marked by emotional and pathological indices suggesting the effects of self-
projection mechanisms. Moreover, this study also tested if being ill was also
reflected in the drawing of the healthy person. Results in part support that the
experience of having cancer was sufficiently invasive to be also reflected in the
drawing of the healthy person. Nevertheless, the fact that no statistically significant
difference was found in the presence of pathological indices (Part B of the CH:D
scores) between the sample of children with cancer and the sample of healthy
children, is not very consistent with the expectations. This intriguing result was
already found in another similar study, and was interpreted as an expression of the
more intense caring attitudes provided to severely ill children by family and
friends, that compensates their suffering and helps them to cope emotionally with
all the constraints imposed by the disease. 19
At a methodological level, this study supports the validity of the CH:D
quantitative scoring of children’s drawings, as the results show statistically

__________________________________________________________________
significantly differences between children suffering from cancer and healthy
children.
As a conclusion, it is possible to state that the drawings of children with cancer
seem to reflect the child’s general ill-being and globally, this study emphasises the
idea that living with cancer severely challenges children’s sense of well-being.
Notes
1
Stephanie Clatworthy, Kathleen Simon and Mary, Tiedman, ‘Child Drawing:
Hospital - An instrument Designed to Measure the Emotional Status of
Hospitalized School-Aged Children’, Journal of Pediatric Nursing 14, No. 1
(1999a): 2-9.
2
Judy Rollins, ‘Tell Me about It: Drawing as a Communication Tool for Children
with Cancer’, Journal of Pediatric Oncology Nursing 22, No. 4 (2005): 203.
3
Iris Epstein, Patricia Orr and Bonnie Stevens, ‘The Experience of Suffering in
Children with Cancer - A Meta-Synthesis’, The Suffering Child 5 (February 2004):
2, accessed March 15, 2011,
http://staff.unak.is/andy/NursResearchMethods0607/TSC/CancerQualitativeMetaA
nalysis.pdf.
4
Nadeane McCaffrey, ‘Major Stressors and Their Effects on the Well-Being of
Children with Cancer’, Journal of Pediatric Nursing 21, No. 1 (2006): 59.
5
Barbara Sourkes, Armsfuls of Time - The Psychological Experience of the Child
with Life-Threatening Illness (London: Routledge, 1995): 82.
6
Lígia Lima, Marina Lemos and Brígida Lema, ‘Concepções de Saúde e de
Doença: Estudo Comparativo entre Crianças Saudáveis e com Doença
Oncológica’, in Saúde, Sexualidade e Género, eds. Isabel Leal, José Pais Ribeiro,
M. Marques and F. Pimenta (Instituto Superior de Psicologia Aplicada: Lisboa,
2010), 455-463.
7
Iris Epstein, Patricia Orr and Bonnie Stevens, ‘The Experience of Suffering in
Children with Cancer - A Meta-Synthesis’, 4.
8
Theresa Skybo, Nancy Ryan-Wenger and Ying-hwa Su, ‘Human Figure
Drawings as a Measure of Children’s Emotional Status: Critical Review for
Practice’, Journal of Pediatric Nursing 22 (2007): 26.
9
Marina Menezes, Carmen Moré and Roberto Cruz, ‘O Desenho como
Instrumento de Medida de Processos Psicológicos em Crianças Hospitalizadas’,
Avaliação Psicológica 7 (2008): 194-196. Rollins, ‘Tell Me about It’, 205.
10
Skybo, ‘Human Figure Drawings’, 15.
11
Riitta-Liisa Kortesluoma, Raija-Leena Punamaki and Merja Nikkonen,
‘Hospitalized Children Drawing Their Pain: The Contents and Cognitive and

__________________________________________________________________
Emotional Characteristics of Pain Drawings’, Journal of Child Health Care 12

(2008): 284-300.
12
Clatworthy, ‘Child Drawing’, 2.
13
Trefor Williams, Noreen Wetton and Alysoun Moon, A Way In: Five Key Areas
of Health Education (London: Health Education Authority, 1989), 18-19.
14
Clatworthy, ‘Child Drawing’, 10-18.
15
Lima, ‘Concepções’.
16
Clatworthy, ‘Child Drawing’.
17
Ibid., 7.
18
Lima, ‘Concepções’.
19
Kortesluoma, ‘Hospitalized Children Drawing’, 296.
Bibliography
Clatworthy, Stephanie, Kathleen Simon, and Mary Tiedman. ‘Child Drawing:
Hospital - An instrument Designed to Measure the Emotional Status of
Hospitalized School-Aged Children’. Journal of Pediatric Nursing 14 (1999a): 2–
9.
—––. ‘Child Drawing: Hospital - An Instrument Designed to Measure the

Emotional Status of Hospitalized School-Aged Children’. Journal of Pediatric
Nursing 14 (1999b): 10–18.
Epstein, Iris, Patricia Orr, and Bonnie Stevens. ‘The Experience of Suffering in
Children with Cancer - A Meta-Synthesis’. The Suffering Child 5 (2004): 2.
Kortesluoma, Riitta-Liisa, Raija-Leena Punamaki, and Merja Nikkonen.

‘Hospitalized Children Drawing Their Pain: The Contents and Cognitive and
Emotional Characteristics of Pain Drawings’. Journal of Child Health Care 12
(2008): 284–300.
Lima, Lígia, Marina Lemos, and Brígida Lema. ‘Concepções de Saúde e de

Doença: Estudo Comparativo entre Crianças Saudáveis e com Doença
Oncológica’. In Saúde, Sexualidade e Género, edited by Isabel Leal, José Pais
Ribeiro, M. Marques, and F. Pimenta, 455–463. Lisboa: Instituto Superior de
Psicologia Aplicada, 2010.
McCaffrey, Nadeane. ‘Major Stressors and Their Effects on the Well-Being of

Children with Cancer’. Journal of Pediatric Nursing 21 (2006): 59–66.

__________________________________________________________________
Menezes, Marina, Carmen Moré, and Roberto Cruz. ‘O Desenho como

Instrumento de Medida de Processos Psicológicos em Crianças Hospitalizadas’.
Avaliação Psicológica 7 (2008): 189–198.
Rollins, Judy. ‘Tell Me about It: Drawing as a Communication Tool for Children
with Cancer’. Journal of Pediatric Oncology Nursing 22 (2005): 203–221.
Skybo, Theresa, Nancy Ryan-Wenger, and Ying-hwa Su. ‘Human Figure

Drawings as a Measure of Children’s Emotional Status: Critical Review for
Practice’, Journal of Pediatric Nursing 22 (2007): 15–28.
Sourkes, Barbara. Armsfuls of Time - The Psychological Experience of the Child

with Life-Threatening Illness. London: Routledge, 1995.
Williams, Trefor, Noreen Wetton, and Alysoun Moon. A Way In: Five Key Areas
of Health Education. London: Health Education Authority, 1989.
Lígia Lima is a Professor in the Oporto Nursing School - Portugal, teaching and
researching in the fields of Health Psychology and Health Promotion.
Marina S. Lemos is an Associate Professor (with Aggregation) in the Faculty of

Psychology and Education of the University of Porto, Portugal, teaching and
researching in the fields of Clinical and Educational Psychology.

Conquering AIDS through Narrative: LongLife Positive
HIV Stories
Felicity Horne
Abstract
This chapter considers the significance of body-mapping and illness narratives by
people living with life-threatening conditions, exploring the ways that ill persons
confer meaning on their disease. In particular, it analyses selected narratives and
body maps created as a form of therapy by a group of Xhosa-speaking HIV-
positive women in South Africa, showing how the way they visualise what is
happening inside their bodies helps them to conceptualise and understand their
illness in a more positive way. This, in turn, alleviates their symptoms and creates
a sense of well-being, culminating in a sense of fulfilled purpose, in which they
pass on to the world what they have learned from their experience. The shape of
their narratives is linked to the ancient quest myth characterised by the three stages
of separation or departure; the road of trials; and return and reintegration with
society. Understanding their experience of illness in terms of larger, pre-existing
cultural scripts is shown to have therapeutic effects, helping the women to retain
their identities and regain a sense of order, control and self-esteem. Narrative
therapy is shown to complement biomedical intervention in a highly effective way.
Key Words: Illness narratives, body maps, quest myth, HIV/AIDS, South Africa,
representation, therapy.
*****
This chapter considers the therapeutic effects of graphic and verbal illness
narratives in general, and in a group of poor, black, South African women living
with AIDS in particular, compiled in a text entitled LongLife: Positive HIV
Stories. 1 This text comprises a collage-like collection of their drawings and verbal
accounts. The authors form the ‘Bambanani’ group, where the word ‘Bambanani’
means ‘to support each other, to lend hands.’ None of the women finished school,
and most of them have a history of abuse by males. They are Xhosa-speaking, with
English as a second or even third language. At one time, the combination of these
factors would have ruled out their becoming writers of their life histories, but
exceptional circumstances - they were part of a group selected by Médecins Sans
Frontières (MSF) to be recipients of anti-retroviral (ARV) treatment - granted
them the privilege of treatment and expression and the means of publication denied
to the vast majority of South African AIDS sufferers at the time. The South
African government’s provision of free treatment for approved cases of the AIDS-
ill had not yet begun when this group was formed, and these women could not
afford to pay for the treatment themselves. Unusually for people of their gender,

90 Conquering AIDS through Narrative
__________________________________________________________________
race and educational level, they were enabled to articulate their experience of
illness in spite of being infected with a stigmatised condition. Indeed, it was -
ironically - their HIV-positive status that brought the Bambanani women out of
obscurity and gave them status of another kind. Had they not become ill, and thus
eligible for this programme, their lives would have remained undocumented.
The Bambanani group came together in the township of Khayelitsha, Cape
Town, South Africa, over a period of some months, and over time the group
became a tightly-knit, mutually supportive unit. Facilitating their treatment and
activities was a small number of professional people including a psychologist,
three doctors and an art teacher. Apart from meeting to receive treatment, the
group engaged in shared activities such as discussion and the making of ‘Memory
Boxes.’ Memory Box work, as it is understood in the context of HIV and AIDS, is
about preparing for death, and about preparing legacies for children who are soon
to become orphans. 2 Most importantly, they drew ‘body maps’ and narrated their
life stories. The striking body maps resulted from an activity in which the women
outlined their entire bodies onto large sheets of card which were then filled in and
coloured according to the way each woman envisaged her body and what was
going on inside it, as well as key events in her history. To illustrate distinctive
discursive features I have had to be selective in my choice of specific body maps
and extracts from their narratives. The author has the permission to use their
pictures here.
1. Nomawethu
Nomawethu draws herself with a smile on her face and explains: ‘White dots
means I’m healthy and when I’m standing I look like I’m so happy with my hands
up and my feet on the snake.’ She goes on:
In my opinion the virus look [sic] like a snake. You can’t see it
and it’s moving in the secret ways and the dark ways. I make the
virus look like that because with AIDS many people are dying
and you can’t point to the people who have the virus. It’s a
destroyer...It destroys me but you see I am standing on the snake.
This virus is a destroyer but I destroy this virus too. 3
Nomawethu’s comparison of the virus to a snake demonstrates the way she has
externalised the virus, conceptualising it as outside of her body. AIDS is seen as an
entity apart from herself. The overriding significance of her representation,
however, is that she sees herself standing on the snake, a clear sign that she feels
she is conquering it: that she feels its powerlessness in relation to herself. The
snake metaphor illustrates how the notion of a physically real entity (the snake)
concretises and makes visible an abstract, invisible state (the HI-virus) and the
subject’s attitude towards that state (standing on, and thus controlling it).

Felicity Horne 91
__________________________________________________________________
Figure 1: Nomawethu.
The interdependence of visualisation, language, metaphor and conceptualisation is

evident here. Nomawethu’s representation illustrates Kleinman’s view that
‘patients’ explanatory models of chronic illness enable sick persons to order,
communicate, and thereby symbolically control symptoms. 4
2. Nondumiso
In the body map of another Bambanani woman, Nondumiso, the only internal
organs she shows are her lungs, 5 probably because her HIV-infection first
manifested as TB. 6 The next stage of her illness was a serious skin problem:
My brother told me about MSF when I got very sick, sick, sick. I
had things like ringworms in my skin - it looked like a brown
map. My skin was very light before but it slowly started to get a
grey colour, then it went darker and darker. The doctors never
told me why it happened. I thought maybe it’s the HIV, but I
don’t know how it works. It’s all over my body. It started to itch
when I was eating the TB tablets and I told the nurses, these
tablets are making my body itch. They said it was nothing. I
finished the pills and my skin started to go dry and itch; then it
started to peel and peel like a snake. As I scratched, it turned
dark. It was terrible and I felt like going underground. When I
looked at myself in the mirror I felt it’s not me. I couldn’t go
outside. People were going to ask me, “What is wrong with you?
Why are you so dark?” So I just stayed inside the house. If I went

__________________________________________________________________
to the clinic I just took an early taxi and came back again and
went inside the house and stayed in bed and watched TV. I
thought to myself, there’s no future, I’m going to die. I have
done nothing, no children, my family is still poor. I thought like
that. 7
These problems gradually improved as the medication began to work. On her

body map she marks her body with large, striking, tricoloured blotches: blue dots
inside, encircled by red and then white. This is how she explicates her drawing:
On my picture I drew the virus - it’s the small blue dot. The
white is my blood. The red circles are the ARVs eating the virus,
and the virus is going down. The ARVs are strong. 8
Figure 2: Nondumiso.
The significance of this visualisation is the choice of colour and relative size of
the physical contenders within her body. The virus is represented as blue and
small, while the surrounding ARVs are shown as large and red in colour. The more
obvious choice would be red for the blood, but she chooses this strong colour for
the medication. The dominance in hue, intensity and size of the ARVs reveals her
sense of their efficacy and power over the physically insignificant HI-virus. Like
Nomawethu’s, her drawing and narrative are an indication of her psychological
confidence that AIDS is being checked and controlled within her body, although,
in reality, she and others like her are in and out of remission,’ ‘occupy[ing] a
liminal position between health and illness.’ 9

Felicity Horne 93
__________________________________________________________________
3. Victoria
Victoria explains her picture thus:
To draw the little dots outside, it’s a virus. In 1999 I found out
I’m HIV positive. I went to the clinic for my baby and I was told
by the counsellor I was dom. Stupid.... I put more virus around
my heart. When I get sad I get sore, and I feel the pain all around
my heart and it go through to my stomach. I feel it like needles
going down my body especially when somebody I know dies
from the virus.
Notable here is the way sadness and fear manifest as pain, showing the close
linkage between emotions and physical symptoms: how negative feelings are
experienced as a worsening of the disease. She goes on:
Now see this handprint. See the one finger on my left hand is
shorter? When I was 13 in my culture, we cut the fingers,
especially the ladies. The boys go to the bush. My father he want
to mark his children, his ladies, so they doesn’t get lost,
especially in Cape Town. If the train hits you, they must know
that mark in the mortuary, when they come to find you ... When I
look at this picture I can see what I am, and what I’m not, and
what I believe in, and what I don’t. I can see that my finger is
missing and that I have HIV, but also that I’m strong, very strong
… I have power over this virus. 10
This response echoes Nomawethu’s confidence that the virus is being

conquered. Additionally, the drawing and narrative have helped to create and
preserve a sense of identity and have clearly facilitated the process of regaining
self-acceptance.

__________________________________________________________________
Figure 3: Victoria.
4. Bulelwa
The dominant image in Bulelwa’s body map is a tree, which she shows
growing up from her lower abdomen to high on her chest and over her lungs. The
tree she pictures in her body is a profoundly significant symbol for her because, as
she relates in her narrative, trees provide shade, beauty and fruit. The leaves are
drawn as large and the growth is vigorously upward, suggesting a belief in the
vitality of the life forces operating in her body. The therapeutic effect of drawing
her body map can be seen in this response of hers:
When I look at this picture I just love the picture. I didn’t know
when I draw myself down [sic] I can be like this. I feel very
better [sic] now. Before I just saw myself as I am, not like this,
like a tree. 11
Bulelwa’s words show that distancing has taken place both through the
transferring of her self-image to another place, a cardboard surface, and through
metaphor (the tree) which represents her in another way, as a different form of life.
The effect of seeing herself as a healthy, growing tree is emotionally uplifting: she
feels liberated from her diseased body.

Felicity Horne 95
__________________________________________________________________
Figure 4: Bulelwa.
5. Maria
Maria also draws psychological strength from plant life:
This is myself, my body with some marks. These dots it’s where
the virus lives. I drew these dots on my baby too before I knew
he was positive or thought he was positive. I drew him in the
womb because at first he was having my antibodies. And I drew
this one pineapple because I grew up in the land of pineapples. In
the case of HIV, pineapple is also a cure. You must eat the hard
block inside. That block is fighting with the virus inside your
tummy.
Figure 5: Maria.

__________________________________________________________________
It is significant that Maria draws the pineapple as square in shape, and uses the
word ‘block’ twice. ‘Block’ suggests strength and solidity, as well as the idea of
‘blocking’ the progress of the virus. Her visualisation helps her to feel that her
body is successfully resisting the virus.
6. Babalwa
Babalwa uses her body map to depict not only her physical condition, but her
role and emotions in relation to AIDS:
When I look at my body map, it reflects the life of activism. This

is why one foot is up in the painting. It shows the strength I have
every day to fight for my life and those who cannot fight for
themselves. At the Holiday Inn when the Minister of Health was
giving a speech, as part of the Civil Disobedience Campaign we
disrupted her talk and I threw my shoe at her. People in her own
family died and are dying, and she still refused to say that HIV
causes AIDS and says that good nutrition can be the main answer
to help you if you are infected.
When I look at this body map I feel like my life is not finished. I
feel good, actually, explaining how I feel inside, certain feelings
and memories that I don’t normally talk about.… So this body
map explains the fears, sadness, happiness and troubles through a
life of HIV and how this changes life. In the end you see the map
lying down, you see your inside and you yourself are someone
looking from outside at your inside. Your problems become
something like a tale. 12
The words ‘you yourself are someone looking from outside at your inside’
illustrate how effectively body-mapping and narrative distance the self from the
body, while the word ‘tale’ suggests the creation of a personal myth. Babalwa’s
creative act enables her to see and understand her body and whole life with new
clarity, and this in turn provides a strongly beneficial psychological effect.

Felicity Horne 97
__________________________________________________________________
Figure 6: Babalwa.
7. Conclusion
The Bambanani women’s LongLife: Positive HIV Stories show how art and
narrative therapy can help ill persons to regain a sense of order, control, meaning
and purpose in their lives, and preserve their sense of identity and wholeness. To
narrative therapists, such accounts vindicate narrative therapy, the aim of which is
to deconstruct unhelpful, problem-saturated stories, to reconstruct alternative
stories and to re-author preferred identities, 13 proving that ‘changing people’s
stories about their lives can help to change their actual lives.’ 14 Kleinman observes
that ‘the illness narrative is a story the patient tells…to give coherence to the
distinctive events and long-term course of suffering…Over the long course of
chronic disorder, these model texts shape and even create experience.’ 15
Individual stories possess their own particularities, but generic, universal
elements underlying the narrative structure may be traced. These universal
elements may be linked to myth, where ‘myth’ may be understood as ‘an
intellectual attempt to order chaos and contradiction in the perceived relation of
men to nature.’ 16 This reveals, in Ruthven’s view, the human ‘yearning for order in
the midst of upheavals and fragmentariness.’ 17 Narratives by the AIDS-ill can be
seen as attempts to find a cause-and-effect structure or orderly design in what
would otherwise be a terrifyingly random universe.
The quest-myth has been identified by Northrop Frye and Joseph Campbell as
the ‘central myth of literature.’ In essence, the quest-myth describes the actions of
a hero who suffers, achieves self-knowledge, and then makes that knowledge
known. The quest-myth involves three stages: separation or departure; the road of
trials; and return and reintegration with society. 18 If we apply this model to the
experience of illness, the ‘departure’ stage would be the manifestation of illness;
the ‘road of trials and victories’ would correspond to the suffering of the ill patient;
and the ‘return and reintegration with society’ would correlate with the survival of
__________________________________________________________________
the hero, whose responsibility it is to witness to others what he or she has learned
from the experience. ‘Quest’ narratives tell of how illness may be lived as a
condition from which something positive can be learned and passed on to others. 19
This is evident in the Bambanani women’s declaration of intent which states:
We Bambanani women are making this book because we want to

teach people living with HIV how to live with HIV. And to also
teach those who are not living with it how to survive. And to let
people know that we positive people are getting a [sic] treatment
to help us live longer. We want to tell the whole world that we
are many and we are working. We are healthy. Also we want our
stories to be published to [sic] the other countries. For those who
are positive not to lose hope, maybe some day we will get a cure.
We want people outside to know that it is not the end of the
world. You can live as many years as you want. 20
In this statement it is apparent that the women are enjoying a profound sense of
fulfilled purpose. They have reached the final stage of the quest myth, the ‘return
and reintegration with society,’ involving the responsibility of witnessing and
testifying to the world, of passing on to others what they have learned from their
experience. Their sense of a larger purpose in the final stage resonates with Jung’s
concept of the ‘collective unconscious’ whereby we move beyond the personal to
the transcendental and achieve a state in which ‘the voice of all mankind resounds
in us.’ 21
Notes
1
Jonathan Morgan and the Bambanani Women’s Group, LongLife: Positive HIV
Stories (Cape Town: ABC Press, 2003).
2
Ibid., 9.
3
Ibid., 22-23.
4
Arthur Kleinman, The Illness Narratives: Suffering, Healing and the Human
Condition (New York: Basic Books, 1988), 48-49.
5
Morgan, LongLife, 36.
6
Ibid., 38.
7
Ibid., 41.
8
Ibid.
9
Lisa Diedrich, Treatments: Language, Politics and the Culture of Illness
(Minneapolis: University of Minnesota Press, 2007), 3.
10
11
Ibid., 86.

Felicity Horne 99
__________________________________________________________________
12
Ken K. Ruthven, Myth (London: Methuen, 1976), 82.
13
Michael White and David Epston, Narrative Means to Therapeutic Ends (New
York: Norton, 1990).
14
Catrina Brown and Tod Augusta-Scott, Narrative Therapy: Making Meaning,
Making Lives (Thousand Oaks, CA: Sage, 2007), xvii.
15
Kleinman, Illness Narratives, 49.
16
Jean Comaroff, ‘Medicine, Symbol and Ideology’, in The Problem of Medical
Knowledge: Examining the Social Construction of Meaning, eds. Peter Wright and
Andrew Treacher (Edinburgh: Edinburgh University Press, 1982), 50.
17
Ruthven, Myth, 21-22.
18
Joseph Campbell, The Hero with a Thousand Faces (Princeton: Princeton
University Press, 1973 [1949]), 36.
19
Arthur W. Frank, ‘Just Listening: Narrative and Deep Illness’, Families, Systems
and Health 16 (1998): 197-210.
20
21
Ruthven, Myth, 21-22.
Bibliography
Berger, Peter, and Thomas Luckmann. The Social Construction of Reality: A
Treatise in the Sociology of Knowledge. London: Allen Lane, 1967.
Brown, Catrina. ‘Dethroning the Suppressed Voice: Unpacking Experience as

Story’. In Narrative Therapy: Making Meaning, Making Lives, edited by Catrina
Brown, and Tod Augusta-Scott, 177–196. Thousand Oaks, CA: Sage, 2007.
Campbell, Joseph. The Hero with a Thousand Faces. Princeton: Princeton

University Press, 1973 [1949].
Comaroff, Jean. ‘Medicine, Symbol and Ideology’. In The Problem of Medical

Knowledge: Examining the Social Construction of Meaning, edited by Peter
Wright, and Andrew Treacher, 49–68. Edinburgh: Edinburgh University Press,
1982.
Couser, G. Thomas. Recovering Bodies: Illness, Disability and Life Writing.

Wisconsin: Wisconsin University Press, 1997.
Diedrich, Lisa. Treatments: Language, Politics and the Culture of Illness.

Minneapolis: University of Minnesota Press, 2007.

__________________________________________________________________
Epstein, Julia. Altered Conditions: Disease, Medicine, and Storytelling. New York
and London: Routledge, 1995.
Estroff, Sue E. ‘Identity, Disability and Schizophrenia: The Problem of

Chronicity’. In Knowledge, Power and Practice: The Anthropology of Medicine
and Everyday Life, edied by Shirley Lindenbaum, and Margaret Lock, 247–286.
Berkeley: University of California Press, 1993.
Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics. Chicago:
University of Chicago Press, 1995.
—––. ‘Just Listening: Narrative and Deep Illness’. Families, Systems and Health
16 (1998): 197–210.
Frye, Northrop. Fables of Identity: Studies in Poetic Mythology. New York:

Harcourt Brace Jovanovich, 1963.
Garro, Linda. ‘Chronic Illness and the Construction of Narratives’. In Pain as

Human Experience, edied by Mary-Jo Del Vecchio Good, Paul E. Brodwin, Byron
J. Good, and Arthur Kleinman, 210–221. Berkeley: University of California Press,
1992.
Hawkins, Anne H. Reconstructing Illness: Studies in Pathography. West Lafayette,

Indiana: Purdue University Press, 1993.
Kleinman, Arthur. The Illness Narratives: Suffering, Healing and the Human
Condition. New York: Basic Books, 1988.
Lakoff, George, and Mark Johnson. Metaphors We Live By. Chicago: University of
Chicago Press. 1980.
Morgan, Jonathan, and the Bambanani Women’s Group. LongLife: Positive HIV
Stories. Cape Town: ABC Press, 2003.
Morris, David B. Illness and Culture in the Postmodern Age. Berkeley: University
of California Press, 1998.
Ruthven, Ken K. Myth. London: Methuen, 1976.

Felicity Horne 101
__________________________________________________________________
White, Michael, and David Epston. Narrative Means to Therapeutic Ends. New
York: Norton, 1990.
Felicity Horne, Department of English Studies, University of South Africa.

Lifting the Lid of Pandora’s Box: Alzheimer’s Disease
in the Movies
Amir Cohen-Shalev and Esther-Lee Marcus

Abstract
In the last decade, mainstream cinema, having engaged the delicate territory of
chronic conditions such as mental retardation, schizophrenia, autism, and cancer,
has made a significant, if slightly hesitant, foray into the territory of Alzheimer’s
disease (AD). Starting with Iris, through A Song for Martin, The Notebook, Away
from Her, The Savages, up to the 2011 winner of Berlin’s film festival, A
Separation, AD has become a legitimate subject for cinematic representation. Yet
the picture of AD that is obtained in those AD mainstream films supports an
already widespread attitude marked by over-simplified, bifurcated, and overly
deterministic aspects. In those films the patients are depicted as passive and
helpless, while the focus shifts to the family caregivers. The contribution of two
recent non-mainstream films, Cortex and Pandora’s Box to the humanisation and
cognitive reappraisal of AD is considered as an alternative to mainstream AD
films. These two films take a different route in keeping the centre stage for the AD
patient; they present the patient as an active agent who is struggling to retain
control and some sense of freedom and choice.
Key Words: Aging in motion pictures, Alzheimer’s disease, caregiver, dementia,

film studies.
*****
1. Introduction
In the last decade, mainstream cinema, having engaged the delicate territory of
chronic conditions such as mental retardation, schizophrenia, autism, and cancer,
has made a significant, if slightly hesitant, foray into the territory of Alzheimer’s
disease (AD). 1 Contemporary cinema seems to be increasingly more concerned
with dementia of AD type. 2 AD has become a major medical, social, and
psychological issue for many of us, and as such it cannot be avoided any longer.
Cinema can, through fictional as well as documentary stories, depict AD to the
public so that it can ‘handle the difficult subject of Alzheimer’s with grace, dignity,
and realism.’ 3 In a recent survey, Segers found that 28 films dealing with the
subject have been released during the first decade of the present century. 4 Several
films have received considerable public attention, such as Iris (Eyre, 2001), 5 A
Song for Martin (August, 2001), 6 The Notebook (Cassavetes, 2004), 7 Away from
Her (Polley, 2006), 8 The Savages (Jenkins, 2007), and most recently, the 2011
winner of Berlin’s film festival, A Separation, by Iranian filmmaker Ashghar
Farhadi. Yet the picture of AD that is obtained in these films supports an already

104 Lifting the Lid in Pandora’s Box
__________________________________________________________________
widespread attitude marked by over-simplified, bifurcated, and overly
deterministic aspects. Presenting the patient as completely passive and helpless
reinforces the status of AD as a medical taboo 9 and perpetrates therapeutic and
psychological despair. In those films family caretakers turn out to be the real
protagonists, leaving the patient behind, in a marginal role. 10
The contribution of two recent non-mainstream films Cortex (Boukhrief, 2008)
and Pandora’s Box (Ustaoğlu, 2008) to both a humanisation and a re-appraisal of
AD will now be considered as an alternative to mainstream AD films.
These two films take a more difficult and more risky route in keeping the centre
stage for the AD patient. They provide a refreshing, alternative rationale to
mainstream cinematic representations of AD in that they insist on getting under the
symptom-ridden medical reality of AD. They present the patient as an active agent
who is struggling to retain some control over the situation and some sense of inner
freedom and choice. Resilience of mind, and by extrapolation, of character, is the
underlying subject of those two films. The insistence on struggle, often bitter and
desperate, bespeaks eloquently of the potential for dignity even in a dire condition
such as AD, and of a belief in human resilience, conviction, and perseverance.
2. Not Necessarily Mind-Less: Cortex

Cortex (Boukhrief, 2008) is the story of an ex-policeman who opts to protect
himself from the pitfalls of dementia by moving into The Residence, a facility
designed to provide for elderly patients with neurodegenerative disorders. The
opening scene shows an aging, yet well preserved, man in the quiet privacy of his
home, packing for some kind of trip, the nature of which remains at this point
obscure. The silence in the room and the man’s concentration alert the viewers to
the specific, obviously unusual objects chosen for the ride: a Rubik’s cube, a book
of Sherlock Holmes adventures, and a revolver. The last object is lifted off a trash
can after a brief search. The choice of objects is intriguing: the first suggests
mental agility and abstract thought; the second - the joy in the mystery of problem-
solving and curiosity as to human nature; and the third - the practicality of
administrating justice and self-defence, as well as violence. These aspects of the
human condition, as they specifically apply to AD, are cleverly and richly
investigated in the film.
In contrast to the mainstream AD films mentioned earlier, Cortex has an AD
protagonist who is the dynamic, rather than passive, focus of both identification
and dignity. Charles Boyer, the retired police detective, is not long in The
Residence before ominous events begin to occur, including a high number of
deaths among the patients. Eschewing the notion that this may be inevitable given
the ages and illnesses of the populace, Charles begins to investigate, questions
lingering about whether his suspicions are valid or merely a product of the ex-
cop’s Alzheimer-driven paranoia. The viewer realises that the protagonist’s AD
identity is inseparable from his identity as a detective. In fact, the hero does not

Amir Cohen-Shalev and Esther-Lee Marcus 105
__________________________________________________________________
lose identity with the onset of AD; his identity becomes embedded in the new
situation. He continues to live through his former identity even as AD gradually
takes control over his consciousness. The ex-detective’s senility seems to be
floating in and out, leaving the viewer guessing whether he is deliberately fooling
the institute’s staff or simply heading swiftly toward oblivion. The institution
becomes a hostile world in which the protagonist is forced to move with care,
suspicion, and audacity. The authorities do not mean well, and it is not clear
whether staff members are contriving against him or simply caught up in their own
petty hatreds and jealousies. Fellow travellers unexpectedly cross the protagonist’s
road and then mysteriously disappear. We are offered a glimpse of the world from
the AD patient’s point of view: pathological paranoia and normal hostile world
scenarios keep alternating, adding to an already fragile consciousness. 11 At times,
despair has the upper hand, for example when Boyer becomes convinced he is
haunted by his own demented ghosts. It is easier to play up to the expectations of
the ‘healthy’ world outside. At the end, though, perseverance wins the day, and the
AD-stricken ex-detective is rewarded with recognition of his intellectual
achievement. The victory is temporary, no doubt, but a moment of satisfaction and
pride makes all the difference between unconditional defeat and combative
fulfilment. ‘What was my code name back in the department,’ he asks his son at
the end; ‘Cortex’ comes with the answer. The seat of intelligence, identity, and
creativity has won its last battle.
The film’s director, Michel Boukrieff, succeeds in challenging well-entrenched
stereotypes concerning the depiction of AD in film. First, this film focuses
exclusively on the AD patient, rather than on his relatives or caregivers. Second,
AD itself is in a sense the focus of the film. The film uses AD as a narrative device,
cleverly blurring reality and imagination as the viewer is gradually led to believe
that the whole thing may be taking place in the confused mind of the
patient/protagonist, only to be positively disillusioned again at the very end. This
double disillusionment lends a special significance to the film - not credence in the
sense of medical or psychological credibility, but what we might call metaphorical
credibility. The AD victim’s desperate efforts to combat his condition, to fight
what seems to be a lost battle, and arrive at some success, although modest and
probably short-lived, is a triumph of some consequence, and a metaphor for
strength and stamina facing a sealed fate. It is a reminder of a famous line from
Alain Resnais’ Providence, where the dying and ailing writer Clive Langham takes
his leave from his family with the words ‘Nothing is written,’ an enigmatic phrase,
possibly meaning nothing is predetermined, and there is a freedom of choice even
in the most constricting of circumstances.
3. The Horizontal Turned Vertical: Pandora’s Box

Family, rather than biology, is the battleground of the AD patient/protagonist in
Pandora’s Box, by Turkish director Yeşim Ustaoğlu in 2008. A long, very slow

__________________________________________________________________
pan shot of a green mountain appears on the screen, basking in bright morning
light, setting a mood of pensive calm and quiet natural beauty, punctuated by
unobtrusive chirping of birds. The shot continues, capturing a country house, and
stopping at a second one. The camera at this point cuts to what seems to be the
interior of this second house, where an old, stooped peasant woman, Nusret, is seen
from behind walking slowly towards the balcony. Next, the old woman is seen
standing on the balcony, holding a white bag with red acorns, spreading them on a
tray. Her gaze wanders for a moment, and then, with no apparent reason or
purpose, it turns into an intense stare of uncertain emotional quality, partly horror,
partly determination, confused and sharp at the same time, with no apparent focus
in the real world. The camera cuts from the woman’s gaze to the bag of acorns that
now appears left open, catching the acorns spreading on the floor of the balcony, as
the old woman seems to be turning inside. It is left for the viewers to speculate on
the nature of the old woman’s behaviour and possible motive. There is no text or
any other narrative clue in the scene, apart from a sense of a certain determination
that accompanies her staring at the mountain. Soon the enigmatic scene will be
given its due, but not before spectators will have been taken to very different
territories.
The following sequence is comprised of short scenes depicting a number of
characters moving about in a defined environmental context, but still telling us
very little about their identities. First in the sequence is a picture of a seaport at
dawn, very gray, its flat horizontality standing out in strict juxtaposition to the
vertical mountainous scenery of the opening scene. It takes a few seconds to spot a
young man, Murat, lying on the stone deck, woken up by the sound of a cellular
phone ringing. Listening for a few seconds, he does not reply and puts the mobile
phone back in his coat pocket. The scene then cuts to the bedroom of an urban
apartment, where a woman, sitting beside a bed where a man is sleeping, shows
signs of frustration as her calls are not being returned.
The way the narrative unfolds is significant, in that it renders the viewer
responsible for putting together these bits and pieces, which are disconnected in
terms of place and narrative logic, yet are connected by an underlying emotional
logic. They belong to their environment, but at the same time they also do not.
These scenes are all silent, cinematically minimal, not explicitly related narrative-
wise, creating an overall effect of barren distress, suggesting blocked
communication and general estrangement. It is a puzzle of disconnectedness. The
structure of the introductory scenes is deliberately fragmented, fallen apart as it
were, the way the acorns in the old woman’s sack spread apart, the way her
consciousness is breaking apart by AD.
About a quarter of an hour into the film, a story seems to be forming. The old
woman of the first scene had disappeared from her village somewhere in the
mountains above the Black Sea in contemporary Turkey. Her three adult children
drive up from the city in order to find her. There is also a grandson, Murat (the

__________________________________________________________________
youngster from the opening harbour scene), a student whose relationships with his
parents are in deep crisis. Crisis is an ongoing reality in the lives of the old
woman’s children. The older daughter is unable to maintain marital relationships
with a husband who loves her, the younger daughter is having a frustrating affair
with a married man, the young son is leading a down-and-out life in a poor,
rundown neighbourhood, and the grandson, Murat, who had never met his
grandmother, is a school dropout and a drifter.
Into this drab family situation enters the old, Alzheimer’s-stricken woman. To
her family she is ‘acting strange.’ At first they do not make the medical connection,
probably because she had been a stranger for them for many years, and vice versa.
Bits of information scattered throughout the film depict a grim picture of desertion
and even hatred. The father had apparently left the household for a younger
woman, and there is barely a mention of him. There is a mixture of bitterness,
envy, and grudge, but also closeness, intimacy, and occasionally warmth and care
between the children, little of which shows in their attitude to their mother.
At the point where Grandma is inevitably institutionalised her grandson takes it
upon himself to take her to ‘her mountain,’ the mountain that was the focus of her
gaze in the first scene, the only constant mental feature that she can hold intact in a
consciousness that is falling apart.
The critical role the grandson will come to play had been carefully prepared
from the very beginning. From the start, he seems to have a deep affinity with the
old woman who is, like himself, a lost soul, thrown out of normative existence into
a whirlwind of estrangement, distress, and terrible loneliness. He sees her medical
condition, not as a clinical symptom, but as some kind of extension of his own way
of being in the world. A ‘standard’ feature employed in AD films to signify the
advanced stage of AD is incontinence in public. When Grandma urinates on the
carpet in his mother’s living room, Murat, his aunt and uncle respond with
uncontrolled laughter. A comment later on sheds some light on this presumably
improper behaviour: ‘I’d urinate on that carpet too,’ Murat tells his uncle, a
wanderer himself, with whom he can comfortably confide. When he is robbed, and
then almost killed by his robber, the experience of imminent death also informs
Murat’s bond with the old woman.
The moments these two lost souls spend together; the mute, natural warmth that
infuses their time together, literally light the screen as they break bread on the deck
of a cruise vessel on the Bosporus. Indeed, the only sunlit scenes in the film take
place when they are together. The second sunlit scene is also the closing one in the
film, another richly metaphorical scene. Having succumbed to his impulse to avoid
placing his grandmother in an institution, Murat has assumed the role of her only
caregiver. He grants her wish, ‘take me to my mountain,’ to return to her village.
The scenes back in the village form an unusual, almost uncanny mixture of
tranquillity, inner piece, and oneness with nature. It is an idyllic picture of grace

__________________________________________________________________
that at the same time acknowledges the bitter and distressing reality of AD for both
bearer and caregiver.
The mountain is a dominant presence throughout the film. It provides the
framework for the dramatic development, first the yearning to be borne out of a
dreadful situation, namely the disease, then as a getaway from a devastating
estrangement of a hopeless and helpless social environment (the Istanbul scenes)
and finally as a salvation-in-death, as Nusret pleas to Murat to let her disappear
again into the mountain before utter forgetfulness takes over.
The last shot takes us back to the mountain, but with a change of direction that
makes all the difference and produces a poetic, richly metaphorical ending. Murat
wakes up to a perfectly clear day, the very clarity at the exact same location of the
opening shot, only to find out that Nusret has gone. Looking out he sees her figure
down in the valley, on the path leading to the heights. It is another moment of
intense concentrated conflict, as his face and hands twitch in an effort to contain
the pain. His pain is laid bare before the viewer, with nothing ‘cinematic’ to hang
on to. It is his mute promise to help her - against the impulse to rescue her - and the
obvious knowledge that the right thing to do is to let her be, that is, let her die and
respect her choice of dying. At this moment the camera tilts up slowly, gently
drawing towards the direction of the old woman’s final journey. The vertical
movement of the camera is a perfect recapitulation and completion of its horizontal
movement in the opening shots. In its starting sequence of shots, the film put AD
within familial and cultural contexts. 12 The last shot aims higher, literally and
metaphorically, moving into a different context and a different sphere, going
beyond reality into symbolic space, into the sphere of spiritual redemption.
Notes
1
Kurt Segers, ‘Degenerative Dementias and Their Medical Care in the Movies’,
Alzheimer Disease & Associated Disorders 21 (2007): 55-59.
2
Maria I. Sánchez Rubio, ‘“¿Y Tú Quién Eres?” (2006) Memory Loss: A View of
Alzheimer’s Disease as Portrayed in the Cinema’, Journal of Medicine and Movies
3 (2007): 135-152.
3
Carrie Hill, ‘Eight Movies about Alzheimer’s Disease You Shouldn’t Miss’,
accessed July 10, 2011,
http://alzheimers.about.com/od/booksmagsandmovies/tp/AlzheimersMovies.htm.
4
Segers, ‘Degenerative Dementias’, 55-59.
5
Daniel Anderson, ‘Love and Hate in Dementia: The Depressive Position in the
Film Iris’, The International Journal of Psychoanalysis 91 (2010): 1289-1297.
6
Sally Chivers, The Silvering Screen. Old Age and Disability in Cinema (Toronto:
University of Toronto Press, 2010), 65-69.

__________________________________________________________________
7
Danny Wedding, Mary A. Boyd and Ryan M. Niemiec, Movies and Mental
Illness 3. Using Films to Understand Psychopathology, 3rd Edition (Cambridge,
MA: Hogrefe Publishing, 2009), 146-147.
8
Chirstopher M. Filley, ‘“Away from Her” - A Love Story in the Grip of
Alzheimer Disease’, Neurology Today 7, Issue 12 (2007): 20 and 22.
9
Segers, ‘Degenerative Dementias’, 58.
10
Chirstopher M. Filley, ‘Caregivers Take Center Stage in “The Savages”. The
Savages Directed by Tamara Jenkins, Searchlight Pictures 2001’, Neurology Today
8, Issue 3 (2008): 20.
11
Dov Shmotkin, ‘Happiness in the Face of Adversity: Reformulating the Dynamic
and Modular Bases of Subjective Well-Being’, Review of General Psychology 9
(2005): 295.
12
Gömül Dönmez-Colin, ‘Women in Turkish Cinema: Their Presence and
Absence as Images and as Image-Makers’, Third Text 42 (2010): 101.
Bibliography
Anderson, Daniel. ‘Love and Hate in Dementia: The Depressive Position in the
Film Iris’. The International Journal of Psychoanalysis 91 (2010): 1289–1297.
Cohen-Shalev, Amir, and Esther-Lee Marcus. ‘Golden Years and Silver Screens:
Cinematic Representation of Old Age’. Journal of Aging, Humanities and the Arts
1 (2005): 85–96.
Chivers, Sally. The Silvering Screen. Old Age and Disability in Cinema. Toronto:
Toronto University Press, 2010.
Gömül, Dönmez-Colin. ‘Women in Turkish Cinema: Their Presence and Absence

as Images and as Image-Makers’. Third Text 42 (2010): 91–105.
Filley, Chirstopher M. ‘“Away from Her” - A Love Story in the Grip of Alzheimer
Disease’. Neurology Today 7, Issue12 (2007): 20–22.
—––. Caregivers Take Center Stage in “The Savages’’’. Neurology Today 8, Issue
3 (2008): 20.
Hill, Carrie. ‘Eight Movies about Alzheimer’s Disease You Shouldn’t Miss’.
Accessed July 10, 2011.
http://alzheimers.about.com/od/booksmagsandmovies/tp/AlzheimersMovies.htm.

__________________________________________________________________
Sánchez Rubio, Maria I. ‘“¿Y Tú Quién Eres?” (2006) Memory Loss: A View of
Alzheimer’s Disease as Portrayed in the Cinema’. Journal of Medicine and Movies
3 (2007): 135–152.
Segers, Kurt. ‘Degenerative Dementias and Their Medical Care in the Movies’.
Alzheimer Disease & Associated Disorders 21 (2007): 55–59.
Shmotkin, Dov. ‘Happiness in the Face of Adversity: Reformulating the Dynamic

and Modular Bases of Subjective Well-Being’. Review of General Psychology 9
(2005): 291–325.
Wedding, Danny, Mary A. Boyd, and Ryan M. Niemiec. Movies and Mental
Illness 3. Using Films to Understand Psychopathology. 3rd Edition. Cambridge,
MA: Hogrefe Publishing, 2009.
Amir Cohen-Shalev teaches psychology and education at the Department of

Communication, Kinneret College in the Jordan Valley, Israel. His main interests
are psychology of the arts, and old age in film.
Esther-Lee Marcus is a geriatric physician at Herzog Hospital, Jerusalem, Israel

(a geriatric-psychiatric hospital) and teaches at the Hadassah-Hebrew University
Faculty of Medicine. Her interests include infectious diseases in the elderly,
nutrition in the elderly, ethical issues in the care of the elderly and medical
humanities.

Passing Strange: Illness, Shame and Performance
Brenda Foley
Abstract
The strategy in ‘passing’ is that of a carefully constructed outline intended to draw
attention away from an interior reality. The task of ‘passing’ is particularly
challenging for those who have a slowly progressive illness: no matter how deeply
desired the wish to keep the ‘cover’ or how well constructed the performance of
‘passing,’ slippage is inevitable. It is no wonder people choose to keep their
illnesses to themselves and find it easier to ‘pass’ than to deal with the
consequences of exposure and endless supposition. Once the secret is out, it is
impossible to withdraw it. And the link between secrets and shame is a difficult
one to untangle. This chapter analyses the palpable tension between the desire to
remain hidden and the fear of being found fraudulent on chronic illness and
‘passing.’
Key Words: Passing, illness, performance, cyborg, shame, masquerade, slippage,

perception, contradiction.
*****
‘At the seam where body joins culture,’ reminds Mark Jeffreys, ‘every
construction of the body begins and ends.’  Any discussion of disability or chronic
illness, with its interrogations of dislocated embodied forms, stigmatised identities,
and devalued narratives soon exposes the instability of the stitched seam. Culture
and body together weave a parallel intent to suppress and keep certain stories from
erupting. In that way, a seam carries its trace of a violent action.
This chapter on illness, shame, and the concept of passing as a performance
technique, both for public consumption and as a private coping strategy, employs
theory from disability and performance studies to engage with the tension between
the secret and revealed in chronic illness. It draws on perspectives from feminist,
disability, and performance activism for the purposes of discussion. ‘Passing’ is
understood to contain historical roots in race, gender, and class in this context.
In We’re Gonna Die, performance artist/playwright Young Jean Lee voiced a
private understanding about pain in public, at the performance venue Joe’s Pub in
New York City:
It’s not even like you can like rip off the mask and let it all hang
out when you’re in private around people who care about you …
because there’s only so long you can keep dumping your pain on
other people before eventually they start to get fed up. Which
makes being in pain an incredibly lonely experience. 

112 Passing Strange
__________________________________________________________________
Yet, there is no full release even in the private realm, as evident in the subtly
voiced guilt expressed in ‘dumping your pain on other people.’ Lee’s performance
echoes what Susan Wendell knows in The Rejected Body:
People with disabilities and illnesses learn that most people do

not want to know about the suffering they experience because of
their bodies. Curiosity about medical diagnoses, physical
appearance, and the sexual and other intimate aspects of
disability is common; interest in the subjective experience is
rare. 
Lee’s performance highlights some critical aspects of the experience of living with
pain on a long-term basis. The first is the use of masking as a device that is both
shield and barrier. She urges to ‘rip off the mask’ to reveal some suppressed aspect
with visceral imagery for the sake of a performance of normalcy. Lee articulates an
attempt to sustain a bifurcated distance between a private world of ‘people who
care’ and a public world from which she needs protection.
For Lee, her subjective experience is that being in pain is an extraordinarily
lonely, isolating space, both in the having it and in the inability to share it. Pernick
reminds, ‘any time a culture defines disease or causation, it is making a partly
subjective, value-based judgment.’  Often the judgment on chronic illness carries a
residual assumption that it is a marker of some essentialism, a carrier of meaning,
and an external manifestation of an internal diseased self. In a discussion of the use
of autobiography in disability narratives, Finger articulates a paramount fear
among many people with chronic illnesses: ‘If you talk about pain, people will say,
see, it isn’t worth it. You would be better off dead.’  It is hard to construct a
behavioural retort for a public that feels your best option in the face of a present
predicament is death. Retreat behind a mask would certainly offer the appearance
of a more desirable, alternative coping strategy.
Obviously, not all of us with illness or disability will respond with masking as a
protective necessity. But many personal accounts of chronic illness report the need
to hide or seek safe retreat. Siebers states, ‘closeting involves things not merely
concealed but difficult to disclose - the inability to disclose is, in fact, one of the
constitutive markers of oppression.’  The compulsory secrecy associated with
maintaining an interior life that accepts the reality of pain and an exterior façade of
wellness that refutes it has the potential to distort the experience of the pain into a
thing of shame. ‘One ironic outcome of passing,’ explains Hillyer, ‘is that, far from
reducing the secret to the status of just one feature among many in the passing
woman’s life - a principal goal of passing in the first place - it makes the secret the
central fact.’  When Lee articulates a sense of guilt in ‘dumping her pain,’ she is
expressing a fear that she will be rejected for the admission but also the nagging
belief that the pain itself is intrinsically contemptible.
Brenda Foley 113
__________________________________________________________________
Sedgwick differentiates guilt from shame: ‘The conventional way of
distinguishing shame from guilt is that shame attaches to and sharpens the sense of
what one is, whereas guilt attaches to what one does.’  The illness and pain,
sharpened by the loneliness of being unable to share the experience can result in a
conflation of illness with identity. The ill-self becomes far more ‘real’ than the
masked well-self that is performed for the public. But with illness there can be a
complicated negotiation between illness, identity, and shame. Sedgwick states, ‘In
fact, shame and identity remain in very dynamic relation to one another, at once
deconstituting and foundational, because shame is both peculiarly contagious and
peculiarly individuating.’  Shame as an individuating condition can function as a
measure by which we derive some perception of self, even as it separates us from
our sense of community. Shame can be contagious because it repels others who
might not otherwise be affected by the organic pain to cover with shame.
To further complicate matters, the rejection of the pain is interpreted as a
rejection of the self. The link with the ill-self and shame is a tangled one. What
started as a thing that couldn’t be shared shifts dangerously into a thing that
shouldn’t be shared. ‘Shame,’ warns Probyn, ‘does not permit any automatic
sharing of commonality; rather, it poses deep limits to communication.’ 
An additional twist to the secrecy, shame, and identity problem in passing is the
issue of sustainability. Presuming one has an illness that can, in fact, adhere to
some fictive performance of embodied wellness, how long can the performance
last? Chronic, progressive illnesses are notoriously wilful, and rarely perform
according to scripted texts. In progressive illnesses, it is inevitable that slippage
will occur and the mask will drop. When the inevitable happens and passing is no
longer an option, obviously, a seismic recalibration will need to take place.
There is a conceptual link between passing and disability discourse that
suggests a different way to use the appeal of the performance component in
passing. In his essay, ‘Disability as Masquerade,’ Siebers examines strategies of
passing although, as he notes, he is ‘concerned less with passing in the classic
sense than with unconventional uses of disability identity that require a
retheorization of passing.’  His approach is especially useful to this discussion
because of its concentration on ‘alternative disability passing’ and the focus on
masquerade that extends beyond interiority. The uses of masquerade are multiple,
and as a concept or strategy masquerade is not inherently ‘better’ than passing but
diverges in intent. Whereas passing seeks anonymity, masquerade is about
destabilisation and positioning, with an argument for politics and agency.
Masquerade acknowledges its spectator as a participant in the event and in doing
so differs from the masked performance of passing described by Young Jean Lee
in her performance piece. ‘Exaggerating or performing difference, when that
difference is a stigma, marks one as a target,’ states Siebers, ‘but it also exposes
and resists the prejudices of society.’  Passing is a performance designed to hide

114 Passing Strange
__________________________________________________________________
difference, whereas masquerade is constructed to draw attention, even distort it to
the degree that difference as a category of distinction becomes suspect.
As Siebers re-theorises passing through masquerade, Haraway reconceptualises
embodiment as a cyborg existence, now part of our cultural lexicon, ‘not afraid of
permanently partial identities and contradictory standpoints.’  Linking Siebers and
Haraway is the acceptance of the partial and contradictory, two elements that can
certainly be extracted from any performance of passing, as well. And equally
important, although often forgotten in the more easily remembered visual image of
a contemporary cyborg is, as McDowell points out, Haraway’s use of Minh-ha’s
‘concept of “inappropriate/d others” to refer to the positioning of people who
refuse to adopt the binary identity of either “self” or “Other” that is offered in
dominant theories of identity.’  The performance of masquerade, with its embrace
of illuminated and embellished contradictions, allows for the collapse of the false
distinction between ill and well selves.
A way, at least conceptually, to resist the link between shame, illness, and
identity and negotiate the bumpy terrain of negative cultural perceptions is to
extrapolate what is productive from passing and combine it with a cyborgian
acceptance. Probyn suggests ‘We must use shame to re-evaluate how we are
positioned in relation to the past and to rethink how we wish to live in proximity to
others.’  In that sense, shame could act as a catalyst to push towards
communication, rather than away from it. Understanding illness as a contradictory,
performative act that acknowledges spectators can limit the damage inflicted to a
sense of self.
Feminist, performance, and disability scholars, activists, and artists over the last
decades have repeatedly argued against the view of the body as a container of
identity but rather assert its function as a site from which multiple, shifting
narratives are constructed and performed - an ‘event-horizon,’ as Battersby
conceived it.  ‘Performance labors under the vulnerable roof of doubt,’ explains
Bailes, ‘tracing the dialectical swing between doubt and hope, never sure of its
footing, always out there for the first time, however many times repeated.’ 
Illness, masquerade, contradiction, ambiguity, are linked in embodied, shape-
shifting, particularly temporal ways that can be about something other than secrets
and shame. Illness, like performance, can be simultaneously of me, but not me. As
Della Pollack states, performance ‘unfolds in time, becoming itself even as it
disappears, even as it differs from itself in the play of signification.’ 
Perhaps the reference at the beginning of this essay to a seam as a kind of
border territory should also allow room for its meaning along the lines of Barthes
fold or crease as a counter narrative; or, what Kuppers hints at when she writes of a
‘furrow’ as not a boundary but an opening ‘against which figures such as self and
body schema emerge.’  Such a reading reclaims the definition of passing as a
shifting from one position to another, rather than an attempt at delineation, and

Brenda Foley 115
__________________________________________________________________
aligns it more accurately with the transience and opportunity for renewal at the
heart of performance.
Notes

Mark Jeffreys, ‘Visible Cripple’, in Disability Studies: Enabling the Humanities,
eds. Sharon L. Snyder, Brenda Jo Brueggemann and Rosemarie Garland-Thomson
(New York: MLA, 2002), 33.

Charles Isherwood, ‘We’re Gonna Die’, NY Times, April 10, 2011, accessed
June 10, 2011, http://theater.nytimes.com/2011/04/11/theater/reviews/were-gonna-
die-by-young-jean-lee-at-joes-pub-review.html.

Susan Wendell, The Rejected Body: Feminist Philosophical Reflections on
Disability (New York: Routledge, 1996), 91.

Martin Pernick, ‘Defining the Defective’, in The Body and Physical Difference,
eds. David T. Mitchell and Sharon L. Snyder (Ann Arbor: University of Michigan
Press, 1997), 90.

G. Thomas Couser, ‘Signifying Bodies’, in Disability Studies: Enabling the
Humanities, eds. Sharon L. Snyder, Brenda Jo Brueggemann and Rosemarie
Garland-Thomson (New York: MLA, 2002), 111.

Tobin Siebers, Disability Theory (Ann Arbor: University of Michigan Press,
2008), 97.

Barbara Hillyer, Feminism and Disability (London: University of Oklahoma
Press, 1993), 152.

Eve Kosofsky Sedgwick, Touching Feeling: Affect, Pedagogy, Performativity
(Durham and London: Duke University Press, 2003), 37.

Ibid., 36.

Elspeth Probyn, Blush: Faces of Shame (Minneapolis: University of Minnesota
Press, 2005), 105.

Siebers, Disability Theory, 100.

Ibid., 118.

Donna J. Haraway, ‘A Cyborg Manifesto: Science, Technology, and Socialist-
Feminism in the Late Twentieth Century’, in Simians, Cyborgs and Women: The
Reinvention of Nature (New York: Routledge, 1991), 155.

Linda McDowell, ‘Spatializing Theories of Feminism’, in Body Space, ed.
Nancy Duncan (New York: Routledge, 1996), 35.

Probyn, Blush: Faces of Shame, xiv.

Christine Battersby, ‘Her Body/Her Boundaries’, in Feminist Theory and the
Body: A Reader, eds. Janet Price and Margrit Shildrick (New York: Routledge,
1999), 351.

116 Passing Strange
__________________________________________________________________

Sarah Jane Bailes, Performance Theatre and the Poetics of Failure (London and
New York: Routledge, 2011), 199.

Della Pollack, Exceptional Spaces: Essays in Performance and History (Chapel
Hill: University of North Carolina Press, 1998), 26.

Petra Kuppers, The Scar of Visibility: Medical Performances and Contemporary
Art (Minneapolis: University of Minn. Press, 2007), 135.
Bibliography
Bailes, Sarah J. Performance Theatre and the Poetics of Failure. London and New
York: Routledge, 2011.
Battersby, Christine. ‘Her Body/Her Boundaries’. In Feminist Theory and the

Body: A Reader, edited by Janet Price, and Margrit Shildrick, 341–358. New York:
Routledge, 1999.
Couser, G. Thomas. ‘Signifying Bodies’. In Disability Studies: Enabling the

Humanities, edited by Sharon l. Snyder, Brenda Jo Brueggemann, and Rosemarie
Garland-Thomson, 109–117. New York: MLA, 2002.
Jeffreys, Mark. ‘Visible Cripple (Scars and Other Disfiguring Displays Included)’.
In Disability Studies: Enabling the Humanities, edited by Sharon L. Snyder,
Brenda Jo Brueggemann, and Rosemarie Garland-Thomson, 31–39. New York:
MLA, 2002.
Haraway, Donna J. Simians, Cyborgs and Women: The Reinvention of Nature.

New York: Routledge, 1991.
Hillyer, Barbara. Feminism and Disability. London: University of Oklahoma Press,

1993.
Isherwood, Charles. ‘We’re Gonna Die’. NY Times, April 10, 2011. Accessed
June 10, 2011. http://theater.nytimes.com/2011/04/11/theater/reviews/were-gonna-
die-by-young-jean-lee-at-joes-pub-review.html.
Kuppers, Petra. The Scar of Visibility: Medical Performances and Contemporary

Art. Minneapolis: University of Minnesota Press, 2007.

Brenda Foley 117
__________________________________________________________________
McDowell, Linda. ‘Spatializing Theories of Feminism’. In Body Space, edited by

Nancy Duncan, 28–44. New York: Routledge, 1996.
Pernick, Martin S. ‘Defining the Defective’. In The Body and Physical Difference,
edited by David T. Mitchell, and Sharon L. Snyder, 89–110. Ann Arbor:
University of Michigan Press, 1997.
Pollack, Della. Exceptional Spaces: Essays in Performance and History. Chapel

Hill: University of North Carolina Press, 1998.
Probyn, Elspeth. Blush: Faces of Shame. Minneapolis: University of Minnesota.

Press, 2005.
Sedgwick, Eve Kosofsky. Touching Feeling: Affect, Pedagogy, Performativity.

Durham and London: Duke University Press, 2003.
Siebers, Tobin. Disability Theory. Ann Arbor: University of Michigan Press, 2008.
Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on

Disability. New York: Routledge, 1996.
Brenda Foley is Professor of Theatre at Marlboro College in Vermont, USA. Her

research interests include contemporary theatre, pop culture, gender and disability
studies.

Depression, Disgrace and Categorical Distinctions: The
Construction of a Stigma-Resistant Self in Published Affective
Disorder Narratives
Peta Cox
Abstract
Like most mental illnesses, affective disorders (depression, bipolar, and anxiety
disorders) are chronic conditions that often occur throughout a person’s life (either
constantly or episodically). Research over the past thirty years has confirmed that
people with these conditions experience shame (termed ‘self-stigma’ in the
literature) and are often stigmatised and discriminated against by the general
population. This chapter will use close textual analysis of Australian affective
disorder autobiographies and Internet postings to examine how authors mitigate
stigma by using the discursive method of separating desired and undesired entities.
In particular, the chapter will look at three such separations: namely, between self
and illness, between ‘the mentally ill’ and ‘the mad,’ and between ‘the public’ and
those diagnosed with an affective disorder. It will be argued that these separations
enable authors to secure and legitimise their sense of self and thereby maintain a
valued sense of self in the face of both internal and external stigma. This chapter
will examine the tension between the productive nature of these strategies and
some of the more problematic implications of such representations.
Key Words: Depression, anxiety, bipolar, narrative, rhetoric, autobiography, self-

stigma.
*****
1. Introduction
Affective disorders are extreme experiences of sadness, happiness, and fear that
are clinically identified as bipolar and unipolar depressions as well as the range of
anxiety disorders, including post-traumatic stress disorder, obsessive compulsive
disorder, generalised anxiety disorder, and phobias. 1 Although the clinical course
varies, these conditions are typically chronic. 2 Individuals diagnosed with affective
disorders experience higher levels of shame and discrimination than people with
other chronic illnesses. 3 As with other conditions that render the sufferer as having
‘questionable moral status,’ people experiencing affective disorders are often
believed to be ‘lazy,’ ‘malingerers’ or, in some other way, ‘bad.’ 4
In contemporary western culture, biomedical accounts are the dominant
explanation of affective disorder aetiology. 5 Biomedical accounts position mental
illness as primarily a biological issue with minimal acknowledgement of situational
factors that may be contributing to an individual’s distress. 6 People diagnosed with
affective disorders often embrace a biological explanation of their suffering as this

120 Depression, Disgrace and Categorical Distinctions
__________________________________________________________________
explanation can reduce their shame by indicating that mental illnesses are medical
conditions that deserve - and require - medical treatment from appropriate health
professionals and empathy from loved ones. 7
In addition to biomedical terminology and explanatory frameworks, individuals
diagnosed with affective disorders use a variety of rhetorical strategies to help
mitigate stigma. Three rhetorical strategies are most common in affective disorder
narratives: the separation of self and illness, the hierarchy between ‘the mentally
ill’ and ‘the mad,’ and an ingroup/outgroup distinction between those with
affective disorders and those without. Each of these strategies relies on presenting
a categorical distinction between a desired and an undesired entity. Categorical
distinctions are both productive, as they help to reduce individual distress, and
socially destructive, as they increase community indifference to certain systemic
social justice issues. Rather than seeing categorical distinctions as always negative
(as is the case in some critical or political accounts of mental illness stigma), this
chapter suggests that the conflict between personal utility and social damage means
that these distinctions are ethically ambivalent.
2. Method
The ethical ambiguity of these distinctions is demonstrated through examples
from a corpus of published Australian affective disorder narratives. The corpus was
collated as part of a larger research project examining how Australians construct
affective disorder narratives that are personally and socially meaningful. The
dataset includes a variety of sources published in Australia between 2000 and
2010, including four autobiographies, one collection of excerpts from
autobiographical writing, two published collections of interviews, personal stories
from two youth mental health websites and postings on one affective disorder
bulletin board. 8 The University of New South Wales, Sydney, provided ethics
approval for this project.
The data has been analysed using a mixture of thematic and discursive
analysis. 9 This methodology has enabled the identification of key themes across
the dataset, while simultaneously supporting critical engagement with the
rhetorical function of particular illness narratives. 10
3. A Separation: Separation of Self and Illness

One of the most common categorical distinctions found in affective disorder
narratives is a separation of self and illness. The following two quotations are
examples of this type of binary opposition:
It was simply a diagnosis. It means I suffer from a treatable,

curable illness. I am no longer the problem, rather, it is this
illness that I just happen to be a sufferer of. 11

Peta Cox 121
__________________________________________________________________
Periodically he becomes a stranger. I call this intruder the ‘Fire
Breathing, Soul-Destroying Dragon’ … I have to be careful not
to make the situation worse by saying the wrong thing ... How I
hate this angry, violent Dragon. 12
These quotations demonstrate two forms of the separation of self and illness. In
the first quotation, the author uses different pronouns for self and illness (‘I’ and
‘it’), implying that these are two separate and distinct entities. Moreover, when the
author states ‘I am no longer the problem, rather it is this illness that I just happen
to be a sufferer of,’ the implication is that the illness is an independent agent that
acts upon the author without their consent. 13 This separation reduces the blame that
the author self-imposes (‘I am no longer the problem’). 14
In the second quotation, the author understands her partner as two separate
creatures - the respectful spouse and the violent dragon. According to the author,
when her partner is symptomatic, he is not really himself, but is rather a different
type of being (a dragon). Thus, the separation of self and illness functions to
position the partner as not being responsible for the actions of the dragon during an
episode. In comparison with the first quotation where the split is within the
individual (so that there are two types of being at the same time), in this quotation
the split is temporal (so that the spouse is one type of being at one time, and
another type of being at another time).
These two quotations demonstrate some of the key ethical ambiguities of this
form of categorical distinction. The destructive and productive aspects of this
separation will now be examined in turn.
A separation of self and illness may do harm for two reasons. First, it may be
used to justify behaviours that are morally unacceptable. For instance, in the
second quotation, the separation of partner and dragon is used to normalise and
justify disrespectful, and potentially violent, interactions. When depression is
understood as being a different entity to the person who experiences it, that person
is no longer ethically bound to apologise or work towards non-aggressive
behaviour, as it was not he who was aggressive. This type of justification of
disrespect is becoming widespread, with instances of its use in rationalising
domestic violence in the form of financial, physical, sexual, or emotional abuse
being repeatedly found on web forums such as the beyondblue bulletin board. 15
Second, a separation of self and illness reduces the ability to think about
emotional distress as a symptom of injustice or systemic inequality. Put simply, a
separation of self and illness implies that the illness course is independent from the
life events of the individual. This means that experiences of homophobia, sexism,
racism, or ableism are no longer understood as justified causes of extreme
emotional distress. Instead, emotional distress is seen as an expression of an
individual pathology divorced from situational factors. This individualisation of
distress may result in communities of support for marginalised individuals being

__________________________________________________________________
eroded as distress is no longer seen as a common experience, and there may be
reduced focus by non-government organisations, government departments and
politicians on social justice issues such as poverty or discrimination. In this way,
the separation of self and illness has the potential to erode community and decrease
the moral imperative for communal care of marginalised individuals.
Conversely, this type of separation can be productive. At an interpersonal level,
the separation of self and illness allows individuals to be more readily forgiven for
minor emotional outbursts or other inappropriate - but non-violent - behaviours,
and thus supports the continuation of relationships despite the challenges of the
affective disorder experience. At an individual level, this form of separation may
enable people to maintain their self-esteem by positioning the ‘defective’ aspects
as separate from the core self. For many people, this separation allows them to
maintain a valued sense of self in the face of extreme suffering.
While the separation of self and illness reveals some of the more extreme
positive and negative consequences of categorical distinctions, the hierarchy in
affective disorder narratives between ‘the mentally ill’ and ‘the mad’ demonstrates
some of the more complex rhetorical implications.
4. A Hierarchy: Mentally Ill and the Mad

In most affective disorder narratives the ‘mentally ill’ are understood as more
morally and socially valuable than ‘the mad.’ Leah refers to this as the difference
between individuals who are ‘stressed out crazy’ and those that are ‘crazy crazy.’ 16
The hierarchy is seen in the following four quotations.
In a discussion of anxiety symptoms, Meg affirms that she is not really crazy by
indicating that she is afraid that others would misconstrue her as being a psycho:
I couldn’t disguise the fact that I was shaking uncontrollably. I

was afraid people would think I was a drug addict or a psycho. 17
When Petria Thomas says that she ‘wasn’t crazy or anything’ she separates
herself from the severely mentally ill:
It wasn’t that I was crazy or anything like that; I just needed

some time away. 18
By stating that their anxiety was analogous to craziness, a young person on

Headspace emphasises that they are not really crazy:
I was living with all kinds of irrational fears, and had many days
where life seemed very dark and I felt like I was going crazy. 19

Peta Cox 123
__________________________________________________________________
Finally, in a statement that normalises her anxiety by separating her experience
from those of freaks and crazy people, an author on Reach Out writes:
Sometimes I still get anxiety attacks, but I know how [to] deal
with them. I’m not a freak and I’m not crazy. 20
Thus, in each of these examples, the author’s own value and self-esteem is
premised on them being (merely) mentally ill and not ‘actually’ crazy.
These quotations indicate an intriguing aspect of the hierarchy of ‘the mentally
ill’ and ‘the mad:’ namely, that ‘madness’ is a constantly deferred identity.
Although there are exceptions, the logic of this deferral is as follows: to members
of the general population who are non-symptomatic, everyone with a mental illness
diagnosis might be considered mad; to those who have been diagnosed with a
mental illness, only individuals diagnosed with psychosis might be mad; to those
who experience psychosis, only those who are sectioned are deemed mad; to
individuals who are sectioned, only those who believe that we all need to wear
aluminium hats are mad; and, to those who believe that everyone needs to wear
aluminium hats, everyone who does not realise the importance of aluminium hats
is just plain balmy.
This ‘throwing down’ of madness to a more stigmatised group helps to secure
an author’s sense of self and protects them against stigma. While this is productive
at an individual level, it is destructive when examined socially. Although it may
initially appear that this ‘throwing down’ is harmless as it is constantly deferring
the stigmatised identity (i.e., the person who says that those with psychosis are mad
is not psychotic and does not need to mitigate the stigma of psychosis), such
actions multiply the stigma that must be negotiated by those further down the
deferral line. Thus, the use of this hierarchy reinscribes the stigma of mental illness
by reaffirming that being mad is bad. A similar pattern of positive and negative
consequences is also evident in the ingroup/outgroup distinction between those
who experience depression and those who do not.
5. ‘Us’ and ‘Them’: The Public and Those Diagnosed

An ingroup/outgroup distinction is a separation between ‘us’ and ‘them:’ in this
case, between those who experience affective disorders and those who do not. The
ingroup/outgroup distinction is often used in affective disorder narratives when an
author wishes to explain why they did not receive the sympathetic support they
expected from friends, family, or acquaintances. While at times this distinction is
used to explain the behaviour of a particular individual, it is more commonly used
in discussions of the community at large.
The following example is from an author who makes a distinction between
herself and her community during a discussion of reactions to her diagnosis:

__________________________________________________________________
They say, “Oh, you’re not mad” (well, not all the time!), or
““You can’t have manic depression”. Do they think I made it up?
Do they say that to a diabetic? From some I get patronising
tones. Is it to denote quite firmly that they are different/OK/even
better than me, because they don’t have a mental illness? Do they
think I chose this? Do they see it as a weakness on my part? Do
they blame me for having a mental illness? 21
Within this quotation, the author’s distinction between herself and her
community functions to position the community as holding false beliefs about
bipolar disorder. The combination of the author’s repeated use of the phrase ‘they
think’ (in comparison with phrases such as ‘they know’ or ‘they realise’) and her
sarcastic tone positions the truth as being the opposite to the beliefs of her
community. Put differently, the author’s rhetoric functions to affirm that, in reality,
it is not her fault, it is not a choice or weakness, and it is not appropriate to blame
her for her condition. In this way, a separation between those with depression and
those without is mapped onto a distinction between those who are knowledgeable
and those who are ignorant. This in turn enables the author to discredit the claims
of her community and refute their stigmatising beliefs.
In another example of an author responding to ‘unhelpful’ attributions, Millisa
Deitz says:
There will always be people who think like this - that those with
depression should be able to rise above it, or take up a hobby, or
be thankful for what they have. These people may never
understand. Mostly, when it comes to depressives, it takes one to
know one. 22
This quotation highlights one of the key functions of the distinction between
people with and without affective disorders. Specifically, this separation allows
authors to explain discriminatory behaviour without demonising the person who
acts in a disrespectful manner. Put simply, this understanding enables authors to
say ‘Oh, he hasn’t experienced depression, that’s why he does not understand.’ For
individuals whose loved ones are not supportive, this type of explanation allows
them both to acknowledge an inappropriate response and continue to love their
friend or family member.
Again, the ingroup/outgroup distinction is not purely ‘good’ or ‘bad.’ The
distinction is useful because it explains why some people do not respond
empathetically to individuals with affective disorders. It is particularly helpful as
an explanatory framework because it can be used to avoid attributing blame for the
misunderstanding: ‘Joe does not understand depression because he hasn’t been
through it’ is an explanation that avoids blame or distress far more readily than

Peta Cox 125
__________________________________________________________________
‘Joe does not understand depression because he is ignorant/horrible’ (externalised
blame) or ‘Joe does not understand depression because only freaks are depressed’
(internalised blame). However, the social ease of this explanation comes at a cost:
not only does it position individuals diagnosed with an affective disorder as a
distinct, and implicitly less valued, category of person, it also normalises and
justifies discrimination and stigma, i.e., those who have never experienced an
affective disorder will, because they can never ‘know’ about it, continue to
discriminate against those who identify as having an affective disorder. Thus, as
with the two previous forms of categorical distinction, at the personal level, an
ingroup/outgroup distinction can relieve personal distress and allow interpersonal
relationships to continue in periods of emotional distress. However, at a societal
level, this type of distinction encourages discrimination and thereby undermines
principles of universal human dignity and de-motivates actions towards social
justice.
6. Discussion and Conclusion

While it may initially appear that the ‘answer’ to the ethical ambiguity of these
categorical distinctions is to choose social over individual good (or vice versa),
such a choice is impossible. Personal and communal suffering are knotted together,
so that relieving personal suffering causes more social suffering, and relieving
social suffering causes, at least temporarily, increases in personal suffering. That
is, the narratives that people tell to relieve shame and discrimination inadvertently
reinscribe the very stigma that needs to be relieved. In addition, if individuals
begin telling alternative affective disorder narratives which distance them from
dominant rhetorical strategies, they may experience increases in personal distress
as they will no longer have access to several effective ways of securing a stigma-
resistant conception of self.
Despite these complications, change is possible. Once we acknowledge that
categorical distinctions are destructive to those diagnosed with affective disorders
as a group, while simultaneously often helpful to individuals so diagnosed, we can
then begin to identify when it is, and is not, realistic to move away from affective
disorder narratives based on categorical distinctions. It is both unfair and
unrealistic to expect individuals who are experiencing extreme emotional distress
(i.e., those who are symptomatic) to question or challenge the dominant cultural
understandings of such conditions. Rather, it is the moral responsibility of those
whose emotional suffering is not all-consuming to begin the process of opening
spaces where binary oppositions are less prevalent - by telling and hearing complex
and ambivalent stories of emotional distress.

__________________________________________________________________
Notes
1
International Society for Affective Disorders, ‘ISAD Welcome Page’, ISAD,
https://www.isad.org.uk/default.asp.
2
American Psychiatric Association, Diagnostic and Statistical Manual of Mental
Disorders: DSM-IV-TR, 4th edition (Washington, DC: American Psychiatric
Association, 2000).
3
Lisa Barney, et al., ‘Stigma about Depression and Its Impact on Help-Seeking
Intentions’, Australian and New Zealand Journal Psychiatry 40 (2006); Dennis
Blair and V.A. Ramones, ‘The Undertreatment of Anxiety: Overcoming the
Confusion and Stigma’, Journal of Psychosocial Nursing and Mental Health
Services 34, No. 6 (1996); Patrick Corrigan and Amy Watson, ‘The Paradox of
Self-Stigma and Mental Illness’, Clinical Psychology: Science and Practice 9, No.
1 (2006); Sue Estroff, David Penn and Julie Toporek, ‘From Stigma to
Discrimination: An Analysis of Community Efforts to Reduce the Negative
Consequences of Having a Psychiatric Disorder and Label’, Schizophrenia Bulletin
30, No. 3 (2004); Partamin Farzad Nawabi, ‘Lifting the Veil on Invisible Identities:
A Grounded Theory of Self-Disclosure for College Students with Mood Disorders’
(PhD, University of Maryland, College Park, 2004); Kathleen Griffiths, Helen
Christensen and Amy Jorm, ‘Predictors of Depression Stigma’, BMC Psychiatry 8,
No. 25 (2008); JianLi Wang and Daniel Lai, ‘The Relationship between Mental
Health Literacy, Personal Contacts and Personal Stigma against Depression’,
Journal of Affective Disorders 110, No. 1-2 (2008).
4
Kathy Charmaz, ‘Stories of Suffering: Subjective Tales and Research Narratives’,
Qualitative Health Research 9, No. 3 (1999); Milissa Deitz, My Life as a Side
Effect: Living with Depression (Sydney: Random House Australia, 2004), 125;
Tessa Wigney, Kerrie Eyers and Gordon Parker, Journeys with the Black Dog:
Inspirational Stories of Bringing Depression to Heel (Allen & Unwin Academic,
2008), 138 and 144; G. Cowan, Back from the Brink: Australians Tell Their Stories
of Overcoming Depression (Gordon, NSW: Bird in Hand Media, 2007), 127;
Penelope Rowe and Jessica Rowe, The Best of Times, the Worst of Times: Our
Family’s Journey with Bipolar (Sydney: Allen and Unwin, 2005), 166; Craig
Hamilton, Broken Open (Sydney: Bantam, 2004), 30, Marianne Broug, Seventeen
Voices: Life and Wisdom from inside ‘Mental Illness’ (South Australia: Wakefield
Press, 2008), 38.
5
David Healy, Mania: A Short History of Bipolar Disorder (Johns Hopkins
University Press, 2008); Emily Martin, Bipolar Expeditions: Mania and
Depression in American Culture (Princeton: Princeton University Press, 2007).
6
Simone Fullagar, ‘Sites of Somatic Subjectivity: E-Scaped Mental Health
Promotion and the Biopolitics of Depression’, Social Theory & Health 6, No. 4
(2008); Simone Fullagar, ‘Negotiating the Neurochemical Self: Anti-Depressant

Peta Cox 127
__________________________________________________________________
Consumption in Women’s Recovery from Depression’, Health 13, No. 4 (2009);

Michelle LaFrance, ‘A Bitter Pill: A Discursive Analysis of Women’s Medicalized
Accounts of Depression’, Journal of Health Psychology 12, No. 1 (2007); Nick
Crossley, ‘Prozac Nation and the Biochemical Self’, Debating Biology:
Sociological Reflections on Health, Medicine and Society (2003); Tanya
Luhrmann, Of Two Minds: An Anthropologist Looks at American Psychiatry (New
York: Vintage Books, 2001); Gary Greenberg, Manufacturing Depression: The
Secret History of a Modern Disease (New York: Simon and Schuster, 2010).
7
Anthony Jorm and Kathleen Griffiths, ‘The Public’s Stigmatising Attitudes
Towards People with Mental Disorders: How Important Are Biomedical
Conceptualizations’, Acta Psychiatrica Scandinavica 118 (2008); Jeffrey Pyne, et
al., ‘Relationship between Perceived Stigma and Depression Severity’, Journal of
Nervous & Mental Disease 192, No. 4 (2004); Lisa Blackman, ‘Psychiatric Culture
and Bodies of Resistance’, Body & Society 13, No. 2 (2007); R. Schreiber and G.
Hartrick, ‘Keeping It Together: How Women Use the Biomedical Explanatory
Model to Manage the Stigma of Depression’, Issues in Mental Health Nursing 23,
No. 2 (2002).
8
Ken Haley, Emails from the Edge: A Journey through Troubled Times
(Yarraville: Transit Lounge, 2006); Wigney, Eyers and Parker, Journeys with the
Black Dog: Inspirational Stories of Bringing Depression to Heel; Rowe and Rowe,
The Best of Times, the Worst of Times: Our Family’s Journey with Bipolar; Broug,
Seventeen Voices: Life and Wisdom from inside ‘Mental Illness’; Cowan, Back
from the Brink: Australians Tell Their Stories of Overcoming Depression; Deitz,
My Life as a Side Effect: Living with Depression; Hamilton, Broken Open, Centre
for Mental Health Research.
9
Jodi Aronson, ‘A Pragmatic View of Thematic Analysis’, The Qualitative Report
2, No. 1 (1994); Virginia Braun and Victoria Clarke, ‘Using Thematic Analysis in
Psychology’, Qualitative Research in Psychology 3, No. 2 (2006); Mary Bucholtz,
‘Reflexivity and Critique in Discourse Analysis’, Critique of Anthropology 21, No.
2 (2001); Richard Elliott, ‘Discourse Analysis: Exploring Action, Function and
Conflict in Social Texts’, Marketing Intelligence & Planning 14, No. 6 (1996);
Teun Van Dijk, ‘Critical Discourse Analysis and Conversation Analysis’,
Discourse & Society 10, No. 4 (1999).
10
Michelle Lafrance, Women and Depression: Recovery and Resistance (New
York and London: Taylor & Francis, 2009).
11
Wigney, et al., Journeys with the Black Dog: Inspirational Stories of Bringing
Depression to Heel, 103.
12
Ibid., 178.
13
Darin Weinberg, ‘The Social Construction of Non-Human Agency: The Case of
Mental Disorder’, Social Problems 44, No. 2 (1997).

__________________________________________________________________
14
There is a certain irony in using a separation of self and illness to reduce the
stigma of mental illness. As Dominique notes, ‘saying “I am not my illness,”
suggests a multiplicity of selves is operating’ a split that may, in other
circumstances, be indicative of the kinds of subjectivities the author is trying to
distance from Jill Dominique, ‘The Experience of Mood Disorders through the
Words of Autobiographers and Their Readers’ (PhD, Saybrook University, 2005),
13.
15
beyondblue denied permission for the postings on their bulletin board to be
analysed in my research. As such, although I am familiar with the content of the
bulletin board, analysis of this material cannot be performed in this chapter.
However, the beyondblue website is a public site and I would encourage anyone
interested in the use of depression as a justification for interpersonal violence to go
to the website: www.beyondblue.org.au.
16
Broug, Seventeen Voices: Life and Wisdom from inside ‘Mental Illness’, 31.
17
Ibid., 275.
18
Cowan, Back from the Brink: Australians Tell Their Stories of Overcoming
Depression, 86.
19
headspace: National Youth Mental Health Foundation, ‘Headspace.’
20
The Inspire Foundation, ‘Reachout.’
21
Wigney, Eyers, and Parker, Journeys with the Black Dog: Inspirational Stories
of Bringing Depression to Heel, 94.
22
Deitz, My Life as a Side Effect: Living with Depression, 6.
Bibliography
Aronson, Jodi. ‘A Pragmatic View of Thematic Analysis’. The Qualitative Report
2, No. 1 (1994): 1–3.
Barney, Lisa, Kathleen Griffiths, Anthony Jorm, and Helen Christensen. ‘Stigma
About Depression and Its Impact on Help-Seeking Intentions’. Australian and New
Zealand Journal Psychiatry 40 (2006): 51–54.
Blackman, Lisa. ‘Psychiatric Culture and Bodies of Resistance’. Body & Society
13, No. 2 (2007): 1–23.
Blair, Dennis, and V.A. Ramones. ‘The Undertreatment of Anxiety: Overcoming

the Confusion and Stigma’. Journal of Psychosocial Nursing and Mental Health
Services 34, No. 6 (1996): 9–18.

Peta Cox 129
__________________________________________________________________
Braun, Virginia, and Victoria Clarke. ‘Using Thematic Analysis in Psychology’.

Qualitative Research in Psychology 3, No. 2 (2006): 77–101.
Broug, Marianne. Seventeen Voices: Life and Wisdom from inside ‘Mental Illness’.
South Australia: Wakefield Press, 2008.
Bucholtz, Mary. ‘Reflexivity and Critique in Discourse Analysis’. Critique of

Anthropology 21, No. 2 (2001): 165–183.
Charmaz, Kathy. ‘Stories of Suffering: Subjective Tales and Research Narratives’.

Qualitative Health Research 9, No. 3 (1999): 362–382.
Corrigan, Patrick, and Amy Watson. ‘The Paradox of Self-Stigma and Mental
Illness’. Clinical Psychology: Science and Practice 9, No. 1 (2006): 35–53.
Cowan, Graeme. Back from the Brink: Australians Tell Their Stories of
Overcoming Depression. Gordon, NSW: Bird in Hand Media, 2007.
Crossley, Nick. ‘Prozac Nation and the Biochemical Self’. Debating Biology:
Sociological Reflections on Health, Medicine and Society (2003): 245–258.
Deitz, Milissa. My Life as a Side Effect: Living with Depression. Sydney: Random
House Australia, 2004.
Dominique, Jill. ‘The Experience of Mood Disorders through the Words of

Autobiographers and Their Readers’. PhD diss., Saybrook University, 2005.
Elliott, Richard. ‘Discourse Analysis: Exploring Action, Function and Conflict in

Social Texts’. Marketing Intelligence & Planning 14, No. 6 (1996): 65–68.
Estroff, Sue, David Penn, and Julie Toporek. ‘From Stigma to Discrimination: An
Analysis of Community Efforts to Reduce the Negative Consequences of Having a
Psychiatric Disorder and Label’. Schizophrenia Bulletin 30, No. 3 (2004): 493–
509.
Farzad Nawabi, Partamin. ‘Lifting the Veil on Invisible Identities: A Grounded

Theory of Self-Disclosure for College Students with Mood Disorders’. PhD diss.,
University of Maryland, College Park, 2004.

__________________________________________________________________
Fullagar, Simone. ‘Negotiating the Neurochemical Self: Anti-Depressant

Consumption in Women’s Recovery from Depression’. Health 13, No. 4 (2009):
389.
—––. ‘Sites of Somatic Subjectivity: E-Scaped Mental Health Promotion and the
Biopolitics of Depression’. Social Theory & Health 6, No. 4 (2008): 323–341.
Greenberg, Gary. Manufacturing Depression: The Secret History of a Modern

Disease. New York: Simon and Schuster, 2010.
Griffiths, Kathleen, Helen Christensen, and Anthony Jorm. ‘Predictors of

Depression Stigma’. BMC Psychiatry 8, No. 25 (2008).
Haley, Ken. Emails from the Edge: A Journey through Troubled Times. Yarraville:
Transit Lounge, 2006.
Hamilton, Craig. Broken Open. Sydney: Bantam, 2004.
headspace: National Youth Mental Health Foundation. ‘Headspace’.

http://www.headspace.org.au/.
Healy, David. Mania: A Short History of Bipolar Disorder. Johns Hopkins

University Press, 2008.
International Society for Affective Disorders. ‘Isad Welcome Page’. ISAD,

https://www.isad.org.uk/default.asp.
Jorm, Anthony, and Kathleen Griffiths. ‘The Public’s Stigmatising Attitudes

Towards People with Mental Disorders: How Important Are Biomedical
Conceptualizations’. ACTA Psychiatrica Scandinavica 118 (2008): 315–321.
LaFrance, Michelle. ‘A Bitter Pill: A Discursive Analysis of Women’s

Medicalized Accounts of Depression’. Journal of Health Psychology 12, No. 1
(2007): 127–140.
Lafrance, Michelle. Women and Depression: Recovery and Resistance. New York
and London: Taylor & Francis, 2009.
Luhrmann, Tanya. Of Two Minds: An Anthropologist Looks at American

Psychiatry. New York: Vintage Books, 2001.

Peta Cox 131
__________________________________________________________________
Martin, Emily. Bipolar Expeditions: Mania and Depression in American Culture.

Princeton: Princeton University Press, 2007.
Pyne, Jeffrey, Eugene Kuc, Paul Schroeder, John Fortney, Mark Edlund, and Greer
Sullivan. ‘Relationship between Perceived Stigma and Depression Severity’.
Journal of Nervous & Mental Disease 192, No. 4 (2004): 278–283.
Rowe, Penelope, and Jessica Rowe. The Best of Times, the Worst of Times: Our
Family’s Journey with Bipolar. Sydney: Allen and Unwin, 2005.
Schreiber, Rita, and Gwen Hartrick. ‘Keeping It Together: How Women Use the
Biomedical Explanatory Model to Manage the Stigma of Depression’. Issues in
Mental Health Nursing 23, No. 2 (2002): 91–105.
Van Dijk, Teun. ‘Critical Discourse Analysis and Conversation Analysis’.

Discourse & Society 10, No. 4 (1999): 459–460.
Wang, JianLi, and Daniel Lai. ‘The Relationship between Mental Health Literacy,
Personal Contacts and Personal Stigma against Depression’. Journal of Affective
Disorders 110, No. 1-2 (2008): 191–196.
Weinberg, Darin. ‘The Social Construction of Non-Human Agency: The Case of

Mental Disorder’. Social Problems 44, No. 2 (1997): 217–234.
Wigney, Tessa, Kerrie Eyers, and Gordon Parker. Journeys with the Black Dog:
Inspirational Stories of Bringing Depression to Heel. Allen & Unwin Academic,
2008.
Peta Cox is a PhD candidate in the School of Public Health and Community
Medicine, Faculty of Medicine, University of New South Wales, Sydney. Her
research concerns how Australians understand and represent their experiences of
mental illness.

Section 4
The Caregivers’ Stories

Improvisation: Five Capacities for Coping with Trauma and
Loss in Chronic Illness
Patricia Fennell, John Esposito and Anne Fantauzzi

Abstract
To live fully in spite of the changes and losses that chronic illnesses bring, we must
learn to accept our new circumstances and find meaning in our experience. The
arts, whether through music, humour, movement, writing, painting, or other means,
help people with chronic illnesses develop acceptance and meaning. People usually
experience four phases in the process of adapting to live with chronic illness:
Crisis, Stabilisation, Resolution, and Integration, to navigate on their way to
defining a new self and a new life after the onset of chronic illness. It is in the third
phase, Resolution, where individuals recognise deeply that their old life will not
return. They begin to find meaning in their experience, establish an authentic new
self and develop a supportive, meaningful philosophy. The tools of improvisation
offer a pathway toward establishing meaning in the chronic illness experience.
There are five capacities of improvisation that are explored through the arts and
that people with chronic illnesses need to acquire to establish acceptance and
meaning in their changed circumstances. These capacities are 1) Tolerate
ambiguity, 2) Take risks, 3) Become curious, 4) Take action, and 5) Innovate. The
five capacities offer tools to help clinicians and their clients cull prior experiences
for better assessment of present circumstances and to create innovative ways to
respond to change.
Key Words: Chronic illness, art, innovation, trauma, Fennell Four Phase Model,
innovation, coping, resolution, improvisation.
*****
1. A Paradigm Shift
Over the past several decades, medicine has undergone a paradigm shift from
an acute to a chronic model of illness. This transformation is due to several factors,
including advances in medicine that have transformed once fatal illnesses into
long-term chronic conditions, and has resulted in an aging, and increasingly ill,
population. Many people are now living for decades with chronic illnesses that
would have been fatal to previous generations.
This is not a short-term trend. The World Health Organization reported in June
2011 that between 15.6% and 19.4% of people worldwide have a disability; and
between 2.2% and 3.8% have disabilities considered ‘severe.’ 1 These numbers
have increased since the 1970s, when 10% of the world’s population had a
disability, and are expected to continue rising due to factors including:

136 Improvisation
__________________________________________________________________
 the aging of the world’s population (as living into old age
increases the likelihood of having a chronic illness)
 public health advances, such as availability of cleaner water
and maternal/pediatric health care that have decreased
childhood mortality
 changes in diet and lifestyle that have increased the
prevalence of obesity-associated conditions such as diabetes
and cardiovascular disease, and
 improvements in medical care that have transformed
previously fatal illnesses, such as cancer, stroke, and
HIV/AIDS, into chronic conditions.
More than acute illnesses, chronic conditions require coordination of care

among a multidisciplinary, interdisciplinary team of professionals, laypeople, and
community members. As a result, health care systems are struggling to develop
chronic comprehensive case management methods to supplant the acute clinical
treatment models that have worked for many generations, but largely fail today’s
long-term illness patients.
2. Chronic Illness and Trauma

The experience of living with a chronic illness, often defined by symptoms over
signs, and individual perception rather than laboratory tests, can be highly
traumatic to the patient, as well as to his or her family and loved ones. Patients may
suffer from social stigma, economic losses, and lack of knowledge and
understanding about their condition. In addition, the unpredictability and chronicity
of waxing and waning symptoms, and the patterns of relapse and remission can be
extremely frustrating to all parties.
Chronic illness-associated trauma can stem from several sources:
 Disease/Syndrome Trauma: Realisation that something is

profoundly wrong and that what was once considered
‘normal’ is no longer so. Lifestyle, livelihood, functioning,
and predictability are some of the losses that can result in
trauma.
 Iatrogenic Trauma: Health care providers who question the
veracity or severity of a person’s symptoms, or suggest that
the person is morally or mentally weak, or somehow
responsible for their illness (or inability to recover) can
precipitate trauma in patients.
 Cultural Trauma: Bias against the chronically ill is common
in our culture and may be fostered by sensational media
accounts of unexpected recovery, preliminary research
Patricia Fennell, John Esposito and Anne Fantauzzi 137
__________________________________________________________________
findings, or ‘against the odds’ performance by athletes or
other luminaries. Friends, family members, colleagues, and
general society can show fear, misunderstanding, or bias
toward the chronically ill and their disabilities. As a result of
these attitudes, many people find themselves without jobs,
housing, friends, or other support.
 Vicarious Trauma: People who live with and care for the
chronically ill can also suffer trauma. Stigmas conveyed by
health care providers, the media, and general society against
the chronically ill can result in traumas in family members
and friends who support them. The need to take time from
work to accompany their loved one to medical appointments
can result in job loss or career stagnation.
 Pre-Morbid/Co-Morbid Trauma: Serious trauma may
exacerbate illness symptoms. These might include a death in
the family or natural disaster. In addition, pre-morbid
trauma, such as an auto accident, may decrease resilience
and therefore may make it more difficult to cope with
additional traumas.
3. Four Phases of Chronic Illness

Evidence-based research has established that people experience four phases in
the process of adapting to chronic illness. These phases describe a predictable
passage that patients navigate on their way to defining a new self and a new life
after the onset of chronic illness. The Fennell Four-Phase Model (FFPM) addresses
three domains across four phases: the physical/behavioural, the psychological, and
the social/interactive. 2
In Phase 1, Crisis, the individual moves from onset of illness, which may be
specifically detectable or may happen gradually, to an emergency period when the
patient knows that something is seriously wrong. The task of the individual,
caregivers, and clinicians during this phase is to cope with and contain urgency and
trauma.
In Phase 2, Stabilization, the individual discovers that he or she fails,
sometimes repeatedly, to return to normal regardless of interventions or behaviour.
The task in this phase is to initiate stabilisation and life restructuring.
In Phase 3, Resolution, the individual recognises deeply that his or her old life
will never return. Early in this phase, many experience significant grief and loss.
The task of this Phase is to begin establishing an authentic new self and start
developing a supportive, meaningful philosophy.
In Phase 4, Integration, the individual defines a new self in which illness may
be an important factor, but it is not the only or even the primary one in his or her
life. Integration of the illness into a meaningful life is the goal the individual seeks.

138 Improvisation
__________________________________________________________________
4. Finding Meaning in Suffering
It is in the third phase, Resolution, where individuals recognise deeply that their
old life will not return. They begin to find meaning in their experience, establish an
authentic new self and develop a supportive, meaningful philosophy. The tools of
improvisation offer a pathway toward establishing meaning in the chronic illness
experience.
To live fully in spite of the changes and losses that chronic illnesses bring,
individuals must learn to accept their new circumstances and find meaning in their
experience. The arts, whether through music, humor, movement, writing, painting,
or other methods, help people with chronic illnesses develop acceptance and
meaning.
Improvisation, the skill of top artists, can offer new ways to respond better to
change. In improvisation, we use our existing knowledge and skills to create
something new in an unplanned, innovative way. Authenticity is the bedrock, the
guiding principle of finding meaning. While authenticity can be very difficult to
define, it is instantly recognisable as honest, truthful, and genuine.
5. Improvisation, Creation and Innovation

The ‘Five Capacities of Improvisation’ model states that Improvisation leads to
Creation, and Creation leads to Innovation. It recognizes that change can be either
good or bad and also that it is inevitable. It also presupposes that improvisation,
creation, and innovation help us respond more effectively to that inevitable change.
Creation requires active reflection, action, and authenticity and, therefore, it, in
itself, is a powerful stance against the helplessness which results from trauma,
illness, and ambiguity.
6. Five Capacities of Improvisation

We have identified five capacities of improvisation that are explored through
the arts and which help people with chronic illnesses establish acceptance and
meaning in their changed circumstances. 3
A. Tolerate Ambiguity
This capacity recognises that ambiguity is unavoidable and it is possible to
survive in spite of not knowing what lies ahead. Here, people take the time and
allow themselves to feel uncomfortable in order to get where they need to be. They
find the patience to wait for the right answer, rather than the quick answer, even if
it is difficult. People learn how to do the ‘emotional heavy lifting’ that leads to the
wisdom of appreciating the value of the unknown and the understanding that
something good can come of even the worst of circumstances.

__________________________________________________________________
B. Become Curious
This capacity understands that change is an opportunity and that curiosity leads
to innovation and change. Unfortunately, our culture sometimes squelches
children’s curiosity, wonder, and risk-taking, often pushing people into conformity.
A culture’s toleration of questioning common knowledge, customs, and
expectations is influenced by gender, race and social class. For example, someone
from the upper, educated and/or wealthy class might be praised for ingenuity in
asking why something is done a certain way, while someone from the lower,
uneducated, poorer class might be accused of insubordination. Curiosity may have
positive (‘childlike wonder’), negative (nosy, ‘killed the cat’), and ambiguous
(questioning authority) connotations; context and culture are determining factors
on how curiosity is perceived.
C. Take Risks
Risk taking can be very difficult for many people. The very act of ‘sticking
your neck out,’ intentionally engaging in activities without a certain outcome, is
uncomfortable. But without risk, there is no reward. To be successful, risk taking
should be conscious or planned, versus unconscious or impulsive. Calculated risk
taking is informed by a person’s understanding of his or her physical, mental,
financial, and other limits and abilities. It also is engaged in a manner that
minimizes shame, embarrassment, or fear of failure, and has a pre-planned ‘exit
strategy’ in case things do not go as planned. An important consideration in the
evaluation of what risk to take is a thorough evaluation of the traditional forms,
interventions, or strategies that would be, or already have been, typically utilised.
Can they be utilised or referenced in your current situation? Can
options/possibilities be reengineered within the traditional frameworks and
approaches? Or is it time to stretch these forms/constructs to the point of
innovation?
D. Take Action
To improvise - to respond in the moment to present circumstances - requires
making a choice to take action. This statement or choice results in an action. This
action then produces a reaction, to which you must then react, and the cycle
continues. The painter chooses to pick up a paintbrush. Then he decides what
colour to use. Some people wait for that ‘light bulb,’ the ‘a-ha moment’ before
making a choice to act; waiting for certainty may mean missed opportunities and
stagnation.
E. Innovate
Once a person been curious, taken risks, made choices, and taken action,
innovation is the result. It is important to recognise that the result - an idea, a
paragraph, a picture, a song - whether small or large, is a victory. People should
consider tapping into their community to get outside help, such as training,
140 Improvisation
__________________________________________________________________
instruction, or assistance, to further or improve their creative expression. In all
cases, the chronically ill need to accommodate their limits and abilities throughout
the capacities.
7. Using the Five Capacities to Respond to Change

Using the five capacities to respond to uncertainty, crisis, or change requires
first defining the present situation, problem, or crisis. By understanding which
capacities are strengths, and which are weaknesses, you can ask for help where
needed. Through artistic expression - music, visual art, writing, drama, etc. - you
can apply the capacities to the crisis or trauma you are experiencing.
An attitude of persistence and fortitude is a key element of the five capacities.
This willingness to fail is crucial in developing the self-reliance and resilience in
the face of change, trauma, and crisis that are integral with the chronic illness
experience. The five capacities also recognise the importance of community, and
the ability to borrow from the strength of others when you do not feel you can
persevere.
Notes
1
World Health Organization and World Bank Group, ‘World Report on Disability
2011’ (Geneva: World Health Organization), accessed July 17, 2011,
http://www.who.int/disabilities/world_report/ 2011/report/en/index.html.
2
Patricia A. Fennell and Lucinda Bateman, ‘Matching Best Medical Practices to
Phases of Illness’, Lecture: IACFS Conference, Salt Lake City, Utah, October 9,
2004; Patricia A. Fennell, Leonard A. Jason and Susan Klein, ‘Measuring Phases
of Recovery in Patients with CFS’, Journal of Chronic Fatigue Syndrome 5
(1999): 88-89; Leonard A. Jason, Guy Fricano, Renee R., Taylor, Jane Halpert and
Patricia A. Fennell, ‘Chronic Fatigue Syndrome: An Examination of the Phases’,
Journal of Clinical Psychology 56 (2000): 1497-1508; Leonard A. Jason, Patricia
A. Fennell, Renee R. Taylor, Guy Fricano and Jane Halpert, ‘An Empirical
Verification of the Fennell Phases of the CFS Illness’, Journal of Chronic Fatigue
Syndrome 6 (2000): 47-56; Leonard A. Jason, Patricia A. Fennell, Susan Klein,
Guy Fricano and Jane Halpert, ‘An Investigation of the Different Phases of the
CFS Illness’, Journal of Chronic Fatigue Syndrome 5 (1999): 35-54.
3
Patricia A. Fennell, ‘When Illness Tears Your Soul, Art Gives It Back: Finding
Meaning in Illness through Artistic Expression’, Lecture, DePaul School of New
Learning Chronic Illness Initiative Symposium: Chronic Illness & the Arts,
Chicago, IL, May 12, 2010; Patricia A. Fennell and Lynn Royster, ‘Working the
Third Phase: Meaning, Community and the Arts’, Lecture, DePaul School of New
Learning Chronic Illness Initiative Symposium: Chronic Illness & the Arts,
Chicago, IL, May 12, 2010.

__________________________________________________________________
Bibliography
Fennell, Patricia A. Managing Chronic Illness: The Four Phase Approach. New
York: John Wiley and Sons Inc., 2003.
—––. The Chronic Illness Workbook: Strategies and Solutions for Taking Back
Your Life. Second Edition. Albany, N.Y.: Albany Health Management Publishing,
2006.
Fennell, Patricia A. ‘When Illness Tears Your Soul, Art Gives It Back: Finding
Meaning in Illness through Artistic Expression’. Lecture, DePaul School of New
Learning Chronic Illness Initiative Symposium: Chronic Illness & the Arts.
Chicago, IL, May 12, 2010.
Fennell, Patricia A., and Lynn Royster. ‘Working the Third Phase: Meaning,
Community and the Arts’. Lecture, DePaul School of New Learning Chronic
Illness Initiative Symposium: Chronic Illness & the Arts. Chicago, IL, May 12,
2010.
Fennell, Patricia A., and Lucinda Bateman. ‘Matching Best Medical Practices to
Phases of Illness’. Lecture, IACFS Conference, October 9, 2004.
Fennell, Patricia A., Leonard A. Jason, and Susan Klein. ‘Measuring Phases of
Recovery in Patients with CFS’. Journal of Chronic Fatigue Syndrome 5 (1999):
88–89.
Jason, Leonard A., Patricia A. Fennell, Susan Klein, Guy Fricano, and Jane
Halpert. ‘An Investigation of the Different Phases of the CFS Illness’. Journal of
Chronic Fatigue Syndrome 5 (1999): 35–54.
Jason, Leonard A., Patricia A. Fennell, Renee R. Taylor, Guy Fricano, and Jane
Halpert. ‘An Empirical Verification of the Fennell Phases of the CFS Illness’.
Journal of Chronic Fatigue Syndrome 6 (2000): 47–56.
Jason, Leonard A., Guy Fricano, Renee R. Taylor, Jane Halpert, and Patricia A.
Fennell. ‘Chronic Fatigue Syndrome: An Examination of the Phases’. Journal of
Clinical Psychology 56 (2000): 1497–1508.

142 Improvisation
__________________________________________________________________
Jason, Leonard A., Patricia A. Fennell, Renee R. Taylor, eds. Handbook of Chronic
Fatigue Syndrome and Fatiguing Illnesses. New York: John Wiley and Sons Inc.,
2003.
World Health Organization, and World Bank Group. World Report on Disability
2011. Geneva: World Health Organization, 2011. Accessed July 17, 2011.
http://www.who.int/disabilities /world_report/2011/report/en/.
Patricia A. Fennell is a researcher, clinician, musician and author specializing in

chronic illness, trauma, forensics, hospice, and global health care concerns. As the
author of validated Fennell Four Phase Treatment model, President and CEO of
Albany Health Management Associates, she lectures to, advises, and consults with
government, professional, medical, academic, management, and patient
organisations in North America, Europe, and Africa.
John Esposito, an active jazz pianist and composer for 40 years, the founder and
executive producer, has been a professor of music since 2000 at Bard College in
New York, where he teaches theory, history, composition, piano, drums, and
performance ensembles.
Ann Fantauzzi has taught upper elementary grades, as well as administered and
taught the gifted and talented program in her district as a professional educator for
34 years. For the past three years, she has trained student teachers in Namibia

Does Social Support and Self-Esteem Determine Depression in
Chronically Ill Patients?
Zaeema Riaz, Riaz Ahmad and Sarwat Jahan Khanam

Abstract
The objective of the present study was to determine the association of social
support and self-esteem with depression and to explore the role of self-esteem as
an important factor between social support and depression in chronically ill
patients (HIV, AIDS, & Hepatitis C). Based on detailed literature review the
following hypotheses were formulated: (1) there would be a negative correlation
between social support and depression among chronically ill patients; (2) there
would be a negative correlation between self-esteem and depression among
chronically ill patients; and (3) self-esteem would add to the relationship between
social support and depression of chronically ill patients. The sample consisted of
100 drug addicts diagnosed with HIV, AIDS, or Hepatitis C patients from different
hospital settings and clinics of Karachi, Pakistan. The participants were requested
to fill out the demographic form and were also briefly interviewed about their
illness, type and duration of illness, and treatment. Social Provisions Scale, 1
Rosenberg Self-Esteem Scale 2 and Siddiqui-Shah Depression Scale 3 were
administered to measure perceived social support, level of self-esteem, and
depression of participants respectively. Descriptive Statistics were computed to
analyse sample characteristics. Hierarchical Regression analysis was applied in
order to explore the relationship of social support and self-esteem with depression.
The analysis reflects self-esteem and social support as significant predictors of
depression.
Key Words: Social support, self-esteem, depression, chronic illness.
*****
1. Introduction
Human health revolves around all aspects of life as evident from the definition
of ‘health’ presented by The World Health Organization, ‘a state of complete
physical, mental, and social well-being and not merely the absence of disease or
infirmity.’ 4 Having chronic physical disease is an overpowering event which
seriously undermines the human’s capability to ensure their livelihood, and it
damages social development and mental well-being. The prevalence rate of chronic
diseases is increasing rapidly in Asia. Evidence shows that 75 per cent of carriers
of hepatitis B virus reside in South East Asia and in the Western pacific. 5
Similarly, approximately 4.87 million people affected with HIV are living in south-
east Asia. 6

144 Does Social Support and Self-Esteem Determine Depression
__________________________________________________________________
People living with chronic illnesses like HIV/AIDS and Hepatitis C continue to
face several medical and social challenges like stigma and discrimination, physical
problems and disabilities, and ultimately death. With the growing prevalence of
HIV, researchers are taking interest and are concerned about the psychological
adjustment and the comorbidity of psychological problems like depression in this
population. Depression is relatively common in association with medical illnesses
and may exceed that of the general population in those with active medical
problems. 7 Most of the symptoms of HIV, like decreased sleep and appetite,
fatigue, weight loss and somatic complaints, are similar to depression and may
increase the chances of depression in HIV positive individuals and elevate the
susceptibility of many depression rating scales. 8 Studies have found a high
prevalence of depressive symptoms in patients diagnosed with HIV/AIDS and
substance use disorders. 9 Fact sheets in Pakistan also show that most of the
patients affected with hepatitis experience anxiety and depression. 10 Yoon 11
conducted a cross-sectional observational study to examine level of depression in
patients diagnosed with hepatitis C and HIV. These study findings showed worse
severity of depression in these patients. Co-morbidity of psychological disorders
with such chronic physical disease affects the individuals’ ability of active
participation in the process of treatment and recovery and also hinders engaging in
health promoting behaviours. Feeling of hopelessness and perception of lack of
control in chronic diseases like AIDS is associated with the onset and course of
depression in HIV-infected individuals. 12 Taking into account the effect of
depressive disorder specifically it is manifested that the presence of depressive
disorders often adversely affects functioning and well-being, compliance with
treatment, course of illness, and hence treatment outcome. 13 Meta-analytic
techniques by Ciesla et al., 14 demonstrated that HIV infection is highly linked with
a greater possibility for major depressive disorder. The occurrence of major
depressive disorder was nearly two times higher in HIV-positive individuals than
in HIV-negative individuals.
Although the prevalence rate and symptoms of depression are high in
HIV/AIDS infected population, the causes of these symptoms are yet unclear.
Social, psychological, and biological factors have all been suggested as potential
basis. 15 Many studies have investigated the relationship between depression and
social support together with self-esteem. In most of the recent researches,
compared to other health indicators, social support, family, friends and social
involvement is considered to have a stronger influence on the quality of life.
Moreover, intimate relationships are a significant factor when assessing quality of
life in chronically ill individuals. 16 The way through which social support exercises
its useful effects are not clear, but its role in getting compliance, improved access
to health care, better psychosocial and nutritional status and immune function, and
reduction in the levels of stress are very useful. 17 Previous studies have found a
significant association of social support with psychological and physical concerns

Zaeema Riaz, Riaz Ahmad and Sarwat Jahan Khanam 145
__________________________________________________________________
for HIV-infected individuals. 18 There is bulk of evidence that shows social support
is an important contributor in the course and outcome of depression. 19 Chronic
physical conditions directly or indirectly cause depression as they can affect
domestic relationships, reduce occupational performance, impose economic strains,
and also can undermine personal resources, particularly self-esteem. 20 Diagnosis
of any chronic physical disease is a highly threatening and stressful event and it
can further be aggravated by social or relationship problems, and a poor level of
perceived health. 21 Conversely, greater satisfaction with the availability of social
support was associated with lower levels of mood disturbances and uncooperative
interaction was positively related to the use of the coping strategy of
disengagement or denial. 22 Another study indicated that patients with chronic
disease had higher level of depression and lower self-esteem than their healthy age-
matched controls. 23
Self-esteem is another factor like social support, exerting a useful function on
the well-being of humans. Self-esteem is referred to as a personal and internal
resource like resiliency that is used during stressful situations, 24 and is associated
with health and well-being in a number of samples and domains. 25 Self-esteem is
influential for social experiences and depressive symptoms. Living with chronic
diseases for a long period, a person might become uncertain, hopeless, and
decrease self-confidence; moreover, stigma associated with illness can worsen the
condition. In this distressing situation self-esteem is considered an important
psychological resource that helps to sustain efforts to cope with stress.
The association between social support, self-esteem and depressive symptoms
in the perspective of different chronic diseases and their effects on each other has
been extensively researched. It is believed that social and psychological resources
supplement each other, for example, high self-esteem people are expected to find
or perceive more social support. On the other hand, social support may support a
person’s self-esteem and may be mainly important in decreasing depressive
symptomatology during a stressful situation. 26
Self-esteem functions both as a determinant as well as an outcome linked to
diverse health behaviours and social experiences. Self-esteem is not only seen as
associated with social support but also determines the positive relationship which
has numerous favourable impacts on physical and mental health. There is
increasing evidence that self-esteem along social support helps to reduce the
deleterious effect of stress and affects psychological well-being. 27
Symister and Friend 28 while examining the relationship of social and
problematic support with psychological adjustment in individuals with chronic
illness, found that social support operated through self-esteem, which in turn
increased optimism and was associated with decreased depression. In a
comparative analysis of patients with arthritis and a healthy group it was found that
self-esteem mediated the relationship between negative marital interactions and
depressive symptoms in patients affected with arthritis, whereas, self-esteem

__________________________________________________________________
played no significant role in mediating the relationship between marital
interactions and depressive symptoms in the healthy group. 29 Pearlin, Menaghan,
Lieberman, and Mullan 30 hypothesised that self-esteem and mastery, or personal
control, mediates the effects of social support in individuals experiencing stress, or
in populations with uniformly high levels of stress, for example individuals with a
chronic illness. This theory proposes that social support increases the levels of
individual or psychological resources, which then in turn reduces psychological
distress.
The present study was designed to explore the relationship of self-esteem and
social support with depression in chronically ill patients. Previous findings suggest
the mediating role of self-esteem in the response of physical illness; therefore the
present study expands to examine the role of self-esteem in the relationship
between social support and depression in chronically ill patients.
2. Participants
For the purpose of present study, a sample of 100 drug addicted patients
diagnosed as having HIV, AIDS, or Hepatitis C were selected from different
Rehabilitation centres and hospital settings of Karachi, Pakistan. The age of all the
participants ranged from 18 to 50 years, belonging to lower socioeconomic class.
3. Procedure
After getting informed consent, clinical interviews were conducted to know
about the participants’ illness, type and duration of illness, and treatment. Drug
addicted patients were then diagnosed and classified as either having HIV, AIDS,
or Hepatitis C. Later on, The Social Provisions Scale Urdu Version, 31 Rosenberg
Self-Esteem Scale Urdu Version, 32 and Siddiqui-Shah Depression Scale 33 were
administered to measure perceived social support, level of self-esteem and
depression of participants respectively. Descriptive Statistics were computed to
analyse sample characteristics. Hierarchical Regression analysis was applied in
order to explore the relationship of social support and self-esteem with depression.
4. Result
Table 1- Model Summary of Hierarchical Regression Analysis with Social Support

and Self Esteem as Predictors of Depression
Predictors R R² Adj Change Statistic F df

R²
R² C F C Sig F c
Step I 11.40* 1, 98

__________________________________________________________________
Social .323 .104 .095 .104 11 .40 .001
Support
Step II
Social .431 .186 .169 .082 9.71 .002 11.06* 2, 97
Support
and
Self
Esteem
* p< .001
Table 2 - Model Coefficients for Hierarchical Regression Analysis
Coefficients Un standardised Standardised t p

Coefficients Coefficients
B SE Beta
Step I
Constant 132.246 17.778 7.439 .000
Social Support -1.006 .298 -.323 -3.377 .001
Step II
Constant 146.500 17.639 8.306 .000
Social Support -.852 .290 -.274 -2.942 .004
Self Esteem -1.579 .506 -.290 -3.117 .002
5. Discussion
Hierarchical regression analysis reflects self-esteem and social support as
significant predictors of depression. When the model includes only social support
as a predictor it explains 10 per cent variation [R² = .104, F (1, 98) = 11.40,
p<.001) in the scores on the variable of depression. However, when self-esteem is
entered in the model the variation raised up to 18 per cent [R² = .186, F (2, 97 =
11.06, p<.001), while reducing the beta value for social support from -.323 to -
.274. Results thus reflect the significant role of self-esteem in the relationship of
social support and depression.
Consistent with hypothesis of current study social support, was found to be
associated with reduced depressive symptomatology. 34 This is related to the belief
that social support improves psychological well-being by fulfilling an individual’s
belongingness and reducing loneliness and depressive symptomatology. 35
Similarly the significance of self-esteem in the development of depression is
unquestioned. Specifically in individuals diagnosed as having chronic illnesses
social support and self-esteem play a significant and interdependent role in
determining the depression. One of the important considerations to keep in mind is
that HIV infected patients have lowered self-image and limited social and intimate
__________________________________________________________________
relations, though most of these reactions are self-induced and may be a result of a
person’s schema related to his or her self. Many of these patients undergo
psychotherapeutic interventions and while talking they become aware of how they
got HIV infected, which leads to frustration in them. As in a Pakistani society
where religion does not allow pre-marital or extra marital sexual contact the
individual who is infected due to these reasons may feel guilt, distress, and low
self-image. Similarly, in case of chronic hepatitis slower psychomotor speed and
decreased memory may result in a perceived sense of disability, resulting in mood
problems. While dealing with these and many other similar problems associated
with chronic illnesses, social support is a strong variable which gives a person
motivation to go through the strenuous process of treatment and follow the routine
despite several limitations. Sanchez 36 while listing the risk factors models for
suicide assessment in patients with chronic illnesses also included a breakdown of
social support as an important risk factor while intact support system was a
protective factor against suicide in these patients.
However the question to be answered is what is in ‘social support’ which
motivates an individual toward the process of growth and facing challenges which
he or she cannot stand otherwise. The answer is ‘self-esteem,’ a developed attitude
towards one’s personality. 37 A person develops a sense of self-worth when they get
positive messages from significant others in their life. Social support is thus an
important factor in the formation of self-esteem. The person with a sense of self-
worth, having trust on others around, may have a good view life and feel capable
enough to deal with the stressors with which he or she is coping.
Heller, Swindle, and Dusenbury 38 defined a model to describe the positive
effect of social support through self-esteem. The model includes two important
components of social support: esteem-enhancing appraisals and stress related
interpersonal transactions. The esteem-enhancing component of social support is
very important and is defined as ‘individuals believe that they are cared for and
valued and that others are available to them in times of need.’
The famous negative triad of Aaron Beck suggested that depression develops
from negative thoughts about three aspects, the self, the world/environment, and
the future. Addicted patients with co-morbid chronic illnesses may feel hopeless
toward their future, while receiving negative messages from others around (or
perceiving others as less supportive), and simultaneously feels low in self-worth.
The whole process may result in depression and mood disturbances.
In patients with a spouse, partner, or close relationships, greater feelings of
mastery, greater self-efficacy expectations, and high self-esteem have positive
effects on depressive symptoms. 39 The function of social support is commonly
viewed to diminish feelings of helplessness and to boost self-esteem, which in turn
reduces stress-related depression. 40 In a study of Japanese sample, Fukukawa et
al., 41 found no direct effect of social support on depressed affect, however, with the
mediation of self-esteem social support had an indirect effect on depressed affect.

__________________________________________________________________
Pakistan is a society where social support is its strength, however, due to the
stigma attached with chronic illness such as HIV and Hepatitis C there used to be
rifts in families despite close ties. In the recent years there has been a lot of
awareness in the society that has led to overcoming the stigma and reaping the
benefits of strong familial ties and social networks. Thus in conclusion the findings
of this research suggests that a perception of having strong familial ties and higher
level of self-esteem help the patients with chronic illness to overcome the
psychological distress associated with it and move ahead.
Notes
1
Carolyn E. Cutrona, and Daniel W. Russell, ‘The Provisions of Social
Relationships and Adaptation to Stress’, Advances in Personal Relationships 1
(1987): 37-67.
2
Morris Rosenberg, Society and the Adolescent Self-Image (Princeton, NJ:
Princeton University Press, 1965).
3
Salma Siddiqui, ‘The Assessment of Attributional Style of Depressive and Non
Depressive through an Indigenously Developed Depression Scale’ (PhD diss.
Quid-i-Azam University, Islamabad-Pakistan, 1992).
4
World Health Organization, Constitution of the World Health Organization,
1948, accessed June 5, 2011, http://www.who.int/governance/eb/whoconsti
tutionen.pdf.
5
Ian D. Gust, ‘Epidemiology of Hepatitis B Infection in the Western Pacific and
South East Asia’, An International Journal of Gastroenterology and Hepatology
38, No. 2 (1996): 18.
6
UNAIDS report on the global AIDS epidemic, 2010.
7
Mary F. Morrison, et al., ‘Depressive and Anxiety Disorders in Women with HIV
Infection’, American Journal of Psychiatry 159 (2002): 789-796.
8
Charles E. Drebing, et al., ‘Confounding Factors in the Measurement of
Depression in HIV’, Journal of Personality Assessment 62 (1994): 8-83.
9
Jori A. Berger-Greenstein, et al., ‘Major Depression in Patients with HIV/AIDS
and Substance Abuse’, AIDS Patient Care STDS 21, No. 12 (2007): 942-955.
10
Imtiaz A. Dogar, et al., ‘Relationship between Liver Diseases and Levels of
Anxiety and Depression’, Journal of Pakistan Psychiatric Society 6, No. 2 (2009):
61-64.
11
Jeanie C. Yoon, et al., ‘Somatic Symptoms and the Association between
Hepatitis C Infection and Depression in HIV-Infected Patients’, AIDS Care (2011):
1-11.
12
Judith G. Rabkin, et al., ‘Maintenance of Hope in HIV-Spectrum Homosexual
Men’, American Journal of Psychiatry 147 (1990): 1322-1326; Jeffery A. Kelly, et

__________________________________________________________________
al., ‘Factors Associated with Severity of Depression with Human

Immunodeficiency Virus (HIV) Infection’, Health Psychology 12 (1993): 215-219.
13
Cathy D. Sherbourne, et al., ‘Impact of Psychiatric Conditions on Health-Related
Quality of Life in Persons with HIV Infection’, American Journal of Psychiatry
157 (2000): 248-254; Daniel P. Chapman, Geraldine S. Perry and Tara W. Strine,
‘The Vital Link between Chronic Disease and Depressive Disorders’, Preventing
Chronic Disease 2, No. 1 (2005).
14
Jeffery A. Ciesla and John E. Roberts, ‘Meta-Analysis of the Relationship
Between HIV Infection and Risk for Depressive Disorders’, Am.J.Psychiatry 158
(2001): 725-730.
15
Fiona Judd, et al., ‘Nature of Depression in Patients with HIV/AIDS’, Aust N Z J
Psychiatry 39, No. 9 (2005): 826-832.
16
Deborah L. Haller and Donna R. Miles, ‘Suicidal Ideation among Psychiatric
Patients with HIV: Psychiatric Morbidity and Quality of Life’, AIDS Behavior 7,
No. 2 (2003): 101-108.
17
Bert N. Uchino, John T. Cacioppo and Janice K. Kiecolt-Glaser, ‘The
Relationship between Social Support and Physiological Processes: A Review with
Emphasis on Underlying Mechanisms and Implications for Health’, Psychology
Bulletin 119 (1996): 488-531; Bert N. Uchino, Social Support and Physical
Health: Understanding the Health Consequences of Relationships (New Haven,
CT: Yale University, 2004).
18
Jane Leserman, et al., ‘Progression to AIDS: The Effects of Stress, Depressive
Symptoms, and Social Support,’ Psychosomatic Medicine 61 (1999): 397-406.
19
Ayfer Tezal, Elanur Karabulutlu and Ozlem Sahin, ‘Depression and Perceived
Social Support from Family in Turkish Patients with Chronic Renal Failure
Treated by Haemodialysis’, Journal of Research in Medical Sciences 16, No.
5(2011): 666-673; Edyta A. Skarbek, ‘Psychosocial Predictor of Self-Care
Behaviours in Type 2 Diabetes Mellitus Patients: Analysis of Social Support, Self-
Efficacy and Depression’ (PhD diss. Texas Tech University, Texas, America,
2006); Tulin Gencoz, and Gulendam Astan, ‘Social Support, Locus of Control, and
Depressive Symptoms in Haemodialysis Patients’, Scandinavian Journal of
Psychology 47 (2006): 203-208, doi: 10.1111/j.1467-9450.2006.00508.x.
20
Runar Vilhjalmsson, ‘Direct and Indirect Effects of Chronic Physical Conditions
on Depression: A Preliminary Investigation’, Social Science and Medicine 47, No.
5 (1998): 603-611; Siti N. Yaacob, et al., ‘Loneliness, Stress, Self Esteem and
Depression among Malaysian Adolescents’, Jurnal Kemanusiaan Bil 14 (2009):
85-95.
21
Peter F. Verhaak, et al., ‘Chronic Disease and Mental Disorder’, Social Science
& Medicine 60, No. 4 (2005): 789-797.

__________________________________________________________________
22
Yong S. Song and Kathleen M. Ingram, ‘Unsupportive Social Interactions,
Availability of Social Support, and Coping: Their Relationship to Mood
Disturbance among African Americans Living with HIV’, Journal of Social and
Personal Support 19, No. 1 (2002): 67-85.
23
Warren M. Seigel, et al., ‘Depression, Self-Esteem, and Life Events in
Adolescents with Chronic Diseases’, Journal of Adolescent Health Care 11, No. 6
(1990): 501-504.
24
Jane M. Simoni, et al., ‘Social Support and Depressive Symptomatology among
HIV-Positive Women: The Mediating Role of Self-Esteem and Mastery’, Women
& Health 42 (2005): 1-15.
25
Vanessa Juth, Joshua M. Smyth and Alesia M. Santuzzi, ‘How Do You Feel?
Self-Esteem Predicts Affect, Stress, Social Interaction, and Symptom Severity
during Daily Life in Patients with Chronic Illness’, Journal of Health Psychology
13, No. 7 (2008): 884-894.
26
Jennifer A. Druley and Aloen L. Townsend, ‘Self-Esteem as a Mediator between
Spousal Support and Depressive Symptoms: A Comparison of Healthy Individuals
and Individuals Coping with Arthritis’, Health Psychology 17, No. 3 (1998): 255-
261; Petra Symister and Ronald Friend, ‘The Influence of Social Support and
Problematic Support on Optimism and Depression in Chronic Illness: A
Prospective Study Evaluating Self-Esteem as a Mediator’, Health Psychology 22,
No. 2 (2003): 123-129.
27
Neal Krause, ‘Life Stress and Social Support, and Self-Esteem in an Elderly
Population’, Psychology and Aging 2, No. 4 (1987): 349-356; Kristi C. Guest and
Fred J. Biasini, ‘Middle Childhood, Poverty, and Adjustment: Does Social Support
Have an Impact?’, Psychology in the Schools 38 (2001): 549-560, doi:
10.1002/pits.1042.
28
Symister and Friend, Depression in Chronic Illness, 123-129.
29
Druley and Townsend, Self Esteem, Spousal Support and Depressive Symptoms,
255-261.
30
Leonard I. Pearlin, et al., ‘The Stress Process’, Journal of Health and Social
Behavior 22 (1981): 337-356.
31
Muhammad Rizwan and Neelma Syed, ‘Urdu Translation and Psychometric
Properties of Social Provision Scale’, The International Journal of Educational
and Psychological Assessment 4 (2010): 33-47.
32
Nargis Sardar, ‘Study of Relationship among Childhood Paternal Loss, Sex Role
Orientation, Self Esteem and Locus of Control in Male and Female Students’ (PhD
diss., University of Karachi, 1998).
33
Siddiqui, Indigenously Developed Depression Scale.
34
Simoni, Social Support and Depressive Symptomatology, 1-15. Thomas C. Mills,
et al., ‘Distress and Depression in Men Who Have Sex with Men: The Urban

__________________________________________________________________
Men’s Health Study’, American Journal of Psychiatry 61(2004): 278-285; Phillip

L. Morris, et al., ‘The Relationship between the Perception of Social Support and
Post-Stroke Depression in Hospitalized Patients’, Psychiatry 54 (1991): 306-316;
Isabella Bisschop, et al., ‘Chronic Diseases and Depression: The Modifying Role
of Psychosocial Resources’, Social Science and Medicine 59 (2004): 721-733.
35
Ibid.
36
Herberto G. Sanchez, ‘Risk Factor Model for Suicide Assessment and
Treatment’, Professional Psychology: Research and Practice 32, No. 4 (2001):
351-358.
37
Ayhan Kaya and Micheal Sackes, ‘The Effect of A Self-Esteem Enrichment
Program on the Level of Self Esteem of Grade Eight Students’, Turkish
Psychological Counselling and Guidance Journal 21 (2004): 49-56.
38
Kenneth Heller, Ralph W. Swindle and Linda Dusenbury, ‘Component Social
Support Processes: Comments and Integration’, Journal of Consulting and Clinical
Psychology 544 (1986): 66-470.
39
Brenda W. Penninx, et al., ‘Effects of Social Support and Personal Coping
Resources on Depressive Symptoms: Different for Various Chronic Diseases?’,
American Journal of Epidemiology 17, No. 6 (1998): 551-558; James W. Varni, et
al., ‘Effects of Stress, Social Support, and Self-Esteem on Depression in Children
with Limb Deficiencies’, Archives of Physical Medicine and Rehabilitation 72, No.
13 (1991): 1053-1058.
40
Joseph Becker and Karen Schmaling, ‘Interpersonal Aspects of Depression from
Psychodynamic and Attachment Perspectives’, in Psychosocial Aspects of
Depression, eds. Joseph Becker and Arthur Kleinman (Hillsdale, NJ: Lawrence
Erlbaum, 1991), 131-168.
41
Yasuyuki Fukukawa, et al., ‘Effects of Social Support and Self-Esteem on
Depressive Symptoms in Japanese Middle-Aged and Elderly People’, Journal of
Epidemiology 10 (2000): 63-69.
Bibliography
Becker, Joseph, and Karen Schmaling. ‘Interpersonal Aspects of Depression from
Psychodynamic and Attachment Perspectives’. In Psychosocial Aspects of
Depression, edited by Joseph Becker, and Arthur, Kleinman, 131–168. Hillsdale,
NJ: Lawrence Erlbaum, 1991.
Berger-Greenstein, Jori A., Carlos A. Cuevas, Stephen M. Brady, Glenn Trezza,

Mark A. Richardson, and Terence M. Keane. ‘Major Depression in Patients with
HIV/AIDS and Substance Abuse’. AIDS Patient Care STDS 21, No. 12 (2007):
942–955.

__________________________________________________________________
Bisschop, Isabella, Didi M. Kriegsman, Aartjan T. Beekman, and Dorly J. Deeg.

‘Chronic Diseases and Depression: The Modifying Role of Psychosocial
Resources’. Social Science and Medicine 59 (2004): 721–733.
Chapman, Daniel P., Geraldine S. Perry, and Tara W. Strine. ‘The Vital Link
between Chronic Disease and Depressive Disorders’. Preventing Chronic Disease
2, No. 1 (2005).
Ciesla, Jeffery A., and John E. Roberts. ‘Meta-Analysis of the Relationship

Between HIV Infection and Risk for Depressive Disorders’. American Journal of
Psychiatry 158 (2001): 725–730.
Cutrona, Carolyn E., and Daniel W. Russell. ‘The Provisions of Social

Relationships and Adaptation to Stress’. Advances in Personal Relationships 1
(1987): 37–67.
Drebing, Charles E., Wilfred G. Van Gorp, Charles Hinkin, Eric N. Miller, Paul
Satz, David S. Kim, Steve G. Holsten, and Louis F. D’Elia. ‘Confounding Factors
in the Measurement of Depression in HIV’. Journal of Personality Assessment 62
(1994): 8–83.
Druley, Jennifer A., and Aloen L. Townsend. ‘Self-Esteem as a Mediator Between

Spousal Support and Depressive Symptoms: A Comparison of Healthy Individuals
and Individuals Coping with Arthritis’. Health Psychology 17, No. 3 (1998): 255–
261.
Dogar, Imtiaz A., Naim Siddiqui, Amsa Bajwa, Ayesha Bhatti, Nighat Haider, and
Zahid Y. Hashmi. ‘Relationship between Liver Diseases and Levels of Anxiety and
Depression’. Journal of Pakistan Psychiatric Society 6, No. 2 (2009): 61–64.
Fukukawa, Yasuyuki, Satomi Tsuboi, Naoakira Niino, Fuijiko Ando, Shotaro

Kosugi, and Hiroshi Shimokata. ‘Effects of Social Support and Self-Esteem on
Depressive Symptoms in Japanese Middle-Aged and Elderly People’. Journal of
Epidemiology 10 (2000): 63–69.
Gencoz, Tulin, and Gulendam Astan. ‘Social Support, Locus of Control, and
Depressive Symptoms in Hemodialysis Patients’. Scandinavian Journal of
Psychology 47 (2006): 203–208. Doi: 10.1111/j.1467-9450.2006.00508.x.

__________________________________________________________________
Guest, Kristi C., and Fred J. Biasini. ‘Middle Childhood, Poverty, and Adjustment:
Does Social Support Have an Impact?’ Psychology in the Schools 38 (2001): 549–
560. Doi: 10.1002/pits.1042.
Gust, Ian D. ‘Epidemiology of Hepatitis B Infection in the Western Pacific and

South East Asia’. An International Journal of Gastroenterology and Hepatology
38, No. 2 (1996): 18.
Haller, Deborah L., and Donna R. Miles. ‘“Suicidal Ideation among Psychiatric
Patients with HIV”: Psychiatric Morbidity and Quality of Life’. AIDS Behavior 7,
No. 2 (2003): 101–108.
Heller, Kenneth., Ralph W. Swindle, and Linda Dusenbury. ‘Component Social

Support Processes: Comments and Integration’. Journal of Consulting and Clinical
Psychology 544 (1986): 66–470.
Judd, Fiona, Angela Komiti, Phyllis Chua, Anne Mijch, Jennifer Hoy, Paul Grech,
and Ben Williams. ‘Nature of Depression in Patients with HIV/AIDS’. Aust N Z J
Psychiatry 39, No. 9 (2005): 826–832.
Juth, Vanessa, Joshua M. Smyth, and Alesia M. Santuzzi. ‘How Do You Feel?
Self-Esteem Predicts Affect, Stress, Social Interaction, and Symptom Severity
During Daily Life in Patients with Chronic Illness’. Journal of Health Psychology
13, No. 7 (2008): 884–894.
Kaya, Ayhan, and Michael Sackes. ‘The Effect of a Self-Esteem Enrichment

Program on the Level of Selfesteem of Grade Eight Students’. Turkish
Psychological Counseling and Guidance Journal 21 (2004): 49–56.
Kelly, Jeffery A., Debra A. Murphy, Richard Bahr, Jeffery Koob, Micheal G.
Morgan, Seth C. Kalichman, L. Yuonne Stevenson, Ted L. Brasfield, Barry
Bernstein, and Janet S. St. Lawrence. ‘Factors Associated with Severity of
Depression with Human Immunodeficiency Virus (HIV) Infection’. Health
Psychology 12 (1993): 215–219.
Krause, Neal. ‘Life Stress and Social Support, and Self-Esteem in an Elderly
Population’. Psychology and Aging 2, No. 4 (1987): 349–356.

__________________________________________________________________
Leserman, Jane, Eric D. Jackson, John M. Petitto, Robert N. Golden, Susan G.

Silva, Diana O. Perkins, and Dwight L. Evans. ‘Progression to AIDS: The Effects
of Stress, Depressive Symptoms, and Social Support’. Psychosomatic Medicine 61
(1999): 397–406.
Mills, Thomas C., Jay Paul, Ron Stall, Lance Pollack, Jesse Canchola, Jason Y.
Chang, Judith T. Moskowitz, and Joseph A. Catania. ‘Distress and Depression in
Men Who Have Sex with Men: The Urban Men’s Health Study’. American
Journal of Psychiatry 61 (2004): 278–285.
Morris, Phillip L., Robert G. Robinson, Beverly Raphael, and Duane Bishop. ‘The
Relationship between the Perception of Social Support and Post-Stroke Depression
in Hospitalized Patients’. Psychiatry 54 (1991): 306–316.
Morrison, Mary F., John M. Petitto, Thomas T. Have, David R. Gettes, Marhgaret
S. Chiappini, Anita L. Weber, and Dwight L. Evans. ‘Depressive and Anxiety
Disorders in Women with HIV Infection’. American Journal of Psychiatry 159
(2002): 789–796.
Pearlin, Leonard I., Elizabeth G. Menaghan, Morton A. Lieberman, and Joseph T.

Mullan. ‘The Stress Process’. Journal of Health and Social Behavior 22 (1981):
337–356.
Penninx, Brenda W., Theo Van Tilburg, Joan A. Boeke, Dorly J. Deeg, Didi M.
Kriegsman, and Jacques M. Eijk. ‘Effects of Social Support and Personal Coping
Resources on Depressive Symptoms: Different for Various Chronic Diseases’?
American Journal of Epidemiology 17, No. 6 (1998): 551–558.
Rabkin Judith. G., Janet B. Williams, Romain Neugebauer, Robert Remien, and
Raymond Goetz. ‘Maintenance of Hope in HIV-Spectrum Homosexual Men’.
American Journal of Psychiatry 147 (1990): 1322–1326.
Rizwan, Mohammad, and Neelma Syed. ‘Urdu Translation and Psychometric

Properties of Social Provision Scale’. The International Journal of Educational
and Psychological Assessment 4 (2010): 33–47.
Rosenberg, Morris. Society and the Adolescent Self-Image. Princeton, NJ:

Princeton University Press, 1965.

__________________________________________________________________
Sardar, Nargis. ‘Study of Relationship among Childhood Paternal Loss, Sex Role
Orientation, Self Esteem and Locus of Control in Male and Female Students’.
Unpublished PhD diss., University of Karachi, 1998.
Sanchez, Herberto G. ‘Risk Factor Model for Suicide Assessment and Treatment’.
Professional Psychology: Research and Practice 32, No. 4 (2001): 351–358.
Seigel, Warren M., Neville H. Golden, James W. Gough, Marc S. Lashley, and Ira
M. Sacker. ‘Depression, Self-Esteem, and Life Events in Adolescents with Chronic
Diseases’. Journal of Adolescent Health Care 11, No. 6 (1990): 501–504.
Sherbourne, Cathy D., Ron D. Hays, John A. Fleishman, Benedetto Vitiello,

Kathryn M. Magruder, Eric G. Bing, Dan McCaffrey, Audrey Burnam, Doug
Longshore, Ferd Eggan, Samuel A. Bozzette, and Martin F. Shapiro. ‘Impact of
Psychiatric Conditions on Health-Related Quality of Life in Persons with HIV
Infection’. American Journal of Psychiatry 157 (2000): 248–254.
Siddiqui, Salma. ‘The Assessment of Attributional Style of Depressive and Non

Depressive through an Indigenously Developed Depression Scale’. Unpublished
PhD diss., Quid-i-Azam University, Islamabad-Pakistan, 1992.
Simoni, Jane M., Bu Huang, Elissa J. Goodry, and Heidi D. Montoya. ‘Social
Support and Depressive Symptomatology among HIV-Positive Women: The
Mediating Role of Self-Esteem and Mastery’. Women & Health 42 (2005): 1–15.
Skarbek, Edyta A. ‘Psychosocial Predictor of Self-Care Behaviors in Type 2

Diabetes Mellitus Patients: Analysis of Social Support, Self-Efficacy and
Depression’. Unpublished PhD diss., Texas Tech University, Texas, America,
2006.
Song, Yong S., and Kathleen. M. Ingram. ‘Unsupportive Social Interactions,

Availability of Social Support, and Coping: Their Relationship to Mood
Disturbance among African Americans Living with HIV’. Journal of Social And
Personal Support 19, No. 1 (2002): 67–85.
Symister, Petra, and Ronald Friend. ‘The Influence of Social Support and
Problematic Support on Optimism and Depression in Chronic Illness: A
Prospective Study Evaluating Self-Esteem as a Mediator’. Health Psychology 22,
No. 2 (2003): 123–129.

__________________________________________________________________
Tezal, Ayfer, Elanur Karabulutlu, and Ozlem Sahin. ‘Depression and Perceived
Social Suppoet from Family in Turkish Patients with Chronic Renal Failure
Treated by Hemodialysis’. Journal of Research in Medical Sciences 16, No. 5
(2011): 666–673.
Uchino, Bert N., John T. Cacioppo, and Janice K. Kiecolt-Glaser. ‘Relationship

between Social Support and Physiological Processes: A Review with Emphasis on
Underlying Mechanisms and Implications for Health’. Psychology Bulletin 119
(1996): 488–531.
Uchino, Bert N. Social Support & Physical Health: Understanding the

Healthonsequences of Relationships. New Haven, CT: Yale University, 2004.
UNAIDS report on the global AIDS epidemic.2010.
Varni, James W., Yoshio Setoguchi, Lori R. Rappaport, and Darlene Talbot.
‘Effects of Stress, Social Support, and Self-Esteem on Depression in Children with
Limb Deficiencies’. Archives of Physical Medicine and Rehabilitation 72 (13)
(1991): 1053–1058.
Verhaak, Peter F., Monique J. Heijmans, Loe Peters, and Mieke Rijken. ‘Chronic
Disease and Mental Disorder’. Social Science & Medicine 60, No. 4 (2005): 789–
797.
Vilhjalmsson, Runar. ‘Direct and Indirect Effects of Chronic Physical Conditions

on Depression: A Preliminary Investigation’. Social Science & Medicine 47, No. 5
(1998): 603–611.
World Health Organization. Constitution of the World Health Organization, 1948.

Accessed June 5, 2011.
http://www.who.int/governance/eb/who_constitution_en.pdf.
Yaacob, Siti N., Rumaya Juhari, Mansoor Abu Talib, and Ikechukwu Uba.
‘Loneliness, Stress, Self Esteem and Depression among Malaysian Adolescents’.
Jurnal Kemanusiaan Bil 14 (2009): 85–95.
Yoon J. Choi., Peter K. Crane, Paul S. Ciechanowski, Robert D. Harrington, Mai

M. Kitahata, Heidi M. Crane. ‘Somatic Symptoms and the Association between
Hepatitis C Infection and Depression in HIV-Infected Patients’. AIDS Care (2011):
1–11.

__________________________________________________________________
Zaeema Riaz is working as an Associate Professor and Consultant Clinical

Psychologist at the Institute of Clinical Psychology, University of Karachi,
Pakistan. Her research focus is in the area of developing Psychometrics, exploring
family dynamics involved in psychopathology especially in delinquent behaviour
and schizophrenia.
Riaz Ahmad is working as an Associate Professor and Director at the Institute of

Clinical Psychology, University of Karachi, Pakistan. He has developed several
projects focusing on students, organisational, and patient’s betterment. His major
research work focuses on the normative studies, adaptation/translation and
development of Psychometric tests in cultural and social perspective. Other areas
of research include psychological problems of women and adolescents.
Sarwat Jahan Khanam is working as an Assistant Professor at the Institute of

Clinical Psychology, University of Karachi, Pakistan. Her main area of interest
schizophrenia, paranoia and development of Psychometrics.

Illness or Impairment? Human Frailty as a Guiding Axis:
A Case Study Involving Young Cancer Sufferers in
São Paulo, Brazil
Tatiana Piccardi
Abstract
The relationship between illness and impairment is complicated. The biomedical
ways of differentiating them are not sufficient: they are more of socially and
discursively construed differences rather than natural differences. People acquire
disabilities on account of some illness, similarly, or acquire chronic health
problems on account of some disabilities. Based on a case study involving personal
struggle of a young cancer patient that became disabled because of an amputation,
this study puts forth the idea of adoption of a broader concept of
impairment/disability, related to human frailty, with less precondition of success
for Brazilian inclusion public policies. The findings suggest that it is more
important to create conditions to minimise the suffering created by a disability than
to find a ‘cure’ for chronic illnesses, so that everyone is able to find his/her own
way of exercising humanity.
Key Words: Cancer, disability, frailty, identity, narrative, speech act.
*****
1. The Social and Biomedical Models

The relationship between illness and impairment is complicated. The
distinctions put forward by biomedical sciences are not sufficient: they are more of
socially and discursively construed distinctions and less of natural distinctions.
Many people acquire impairments as a result of illness, and likewise many other
people acquire health problems as a result of impairment or disability.
According to Wendell, 1 an illness is regarded as chronic when it requires
prolonged medical treatment or when the patient is subject to relapses as there is no
expectation of a cure. Rather than finding a ‘cure’ for a chronic illness, it is more
important perhaps to create conditions for the suffering individual provoked by the
impairment to be minimised and that every patient is able to find their own way of
exercising humanity, which is unremittingly fragile, and to do it with dignity.
Adopting a wide-ranging perspective of disability linked to human frailty is a
condition for the group inclusion policy for which the category of ‘disabled’ is not
strictly applicable. This is the case, for instance, of people that are grieving, 2 that
spend some of the years of their lives as ‘amputees’ because of their profound
feeling of loss. The physical pain that accompanies the depression of grieving
itself, the wasting away that isolates the grieving person and requires a number of
years for the person to be able to tackle the loss; all are issues of public health.

160 Illness or Impairment?
__________________________________________________________________
Such individuals often do not require medication. What they merely require is a
space to express their feelings, which could be contemplated within a wide-ranging
disability policy. It is important to underline that developing a wide-ranging
disability policy is not a technical task alone as it depends upon changing attitudes,
commitment and readiness of individuals. It is this change that is encompassed in
development of solidarity, the foundation for a healthy society in its broadest
sense.
Extending the meanings of disability coincides in part with recent research
proposals that interpret disability as an issue which is linked to social sciences
rather than medicine. It is proposed to redefine disability in accordance with a new
paradigm, in which one seeks to outline a panorama of discursive change.
According to these proposals, the social model does not deal with disability as a
natural fact, but as a means of oppression exercised over an impaired body.
Disability, therefore, should not be an exclusive subject of the biomedical sciences,
but a target of political initiatives and State intervention.
2. Frailty as a Guiding Axis: Camila’s Story

The management of difference for the benefit of inclusion and solidarity,
particularly for public policy management, is a delicate activity. In order to achieve
satisfaction, it is necessary to understand how that diversity is constituted and what
is shared within that diversity. It impacts the day-to-day life of citizens with
impairment or disability and of those that help them.
Taylor 3 suggests a pre-condition for an inclusive society is that its citizens are
able to perceive themselves as belonging to a nation. It is the idea of nation that
provides them with the psychological subsidy to apprehend a shared identity.
However, differences tend to increase in globalised societies, making the political
management of difference increasingly more difficult.
From a less political perspective and more of a sociological one, which notion
would serve as an axis for forging an inclusive society for both citizens with or
without disability in a democratic society?
I tend to remember how bothered I would become when a person would come
to me and my daughter Helena during her cancer treatment exhibiting a look of
pity. Their gaze said something like, ‘Good thing that my son is stable’ or ‘I
wouldn’t like to be in the place of this mother.’ Those people fixed their gaze upon
us and then moved away from us fearing that the bad luck might contaminate them
too. It was difficult for those people, as it was challenging for me, before having to
live with the disability that my daughter acquired because of the cancer, to admit
that we are all subject to the possibility of losing what we understand as bodily
integrity. Our vulnerability is continual. It is a constituting part of the body. The
body is a mysteriously frail and strong complex. It can be frail in wellness. It can
be strong in frailty. It depends on how the social network supports us in view of
our impairment.

Tatiana Piccardi 161
__________________________________________________________________
In this chapter, I hypothesise that the frailty of the body, in all of its
dimensions, ought to be a guiding axis for the correct understanding and treatment
of the impairment, as well as for the development of public policies for disability
or chronic illness. The concept of frailty stands for efficiency of these public
policies in the same way that the concept of nation stands for the political and
social unity of a people. The concept of frailty is able to bring about a joint identity
amid the differences, which enables one to listen to what is different and learn in
the other about what exists within oneself, and vice-versa.
Helena Piccardi de Andrade Silva Association (AHPAS) develops social work
for children and young people with cancer after being discharged from hospital.
AHPAS understands that frailty is ever present for both the patient and his/her
family throughout the period of treatment physically, psychologically and
economically. Such frailty is expressed in the body both in the after-effects that the
disease and treatment leave, as well as the psychological weakness due to the lack
of material and human resources. It should be noted that public policies for cancer
patients in Brazil cover only part of the economic requirements during the
treatment period. The state does not cover every physical and psychological need,
despite the efforts to promote integrative treatment for cancer patients.
Camila’s case, a youth that AHPAS cares for, depicts an attempt at combining
efforts in order to provide inclusion and integration by becoming aware of frailty
and developing strategies to promote necessary balance.
Camila is a twelve-year-old girl with oestrogenic sarcoma from the outskirts of
São Paulo. AHPAS provides specialized transport, which ensures that Camila can
attend hospital regularly to receive treatment. Camila lives 30 km away from the
hospital and she is physically incapable of using public transport. The public
transport system is required to provide services for passengers with physical
disability but cannot cope with the demand. However, it was designed for
passengers that are unable to walk and who require transport service at set times
and days. This is not the case of cancer patients that need the service to be flexible
so as to cover the needs ensuing from the constant changes in cancer cases. It is
also challenging for Camila to use the public transport, because of the discomfort,
but particularly because she would be exposed to opportunistic illnesses to which
she is especially susceptible because of the low immunity levels resulting from
chemotherapy. Worse still for Camila, if she were to use public transport, would be
to show that she is a recent amputee. She is very ashamed of her current condition
and does not want to be seen by people she has not met, so to say, and who are not
sensitised by her physical disability and cancer. Camila perceives, in her
innocence, that she can become a victim of lack of empathy. The only thing that
she is unable to perceive is that this lack of empathy, which promotes
discrimination, is a result of a lack of acknowledgement of the frailty itself by the
other people.

__________________________________________________________________
The efforts AHPAS promotes are specialised transportation and social care
initiatives to foster more joy and self-confidence. A series of public cultural and
entertainment initiatives are organised for that purpose. With the same purpose,
educational initiatives are developed in the vehicles so that the children and their
parents can be both entertained and broaden their knowledge of the disease, their
rights and primordially, how to express their rights. It was during one of these
activities that Camila expressed the power of a wish and it was the first time since
she was under the care of AHPAS that she laughed and forgot that she was ill.
3. Narrative as a Wish Fulfilment and Its ‘Curative’ Power

In May 2011, AHPAS organised a musical event for their young patients at a
public theatre in the city. Banda Alana, a group of young percussionists from the
impoverished part of the city, was the group that played at the AHPAS event. The
members of the Banda Alana group develop both as individuals and citizens by
sharing the musical experience in the band, which is named after the third sector
organisation that supports it, the Alana Institute. The event, which was open to all,
aimed at interaction between the members of the band and the young patients.
Fifteen AHPAS youths of various age groups who attended the musical event had
acquired physical disabilities. They were invited to become acquainted with the
musical instruments, and also to learn about the reality of the lives of the young
artists and to share their own reality and challenges.
Camila attended it accompanied by her mother and two younger brothers. At
the outset, the theatre scared her and the high volume of the percussion sound
bothered her a great deal. Camila did not identify herself with the youths of the
band, because she was not able to see in them the poor young people that
succeeded through music; she only saw the youths playing music.
Toward the end of the show, the AHPAS youths were invited to go to the stage
in order to join the band members. With some difficulty (the stage is not disabled
accessible), they went up to the stage, and initially gathered in a corner without
knowing what to do. The Banda Alana young members finished their last song and,
for a brief moment, remained unsure what to do in front of the group, which
timidly occupied a space that did not belong to them.
The band leader, a very sensible girl, took the initiative by clutching the hands
of some children and bringing them towards each other. Amidst them were all sorts
of musical instruments, capable of creating contagious rhythms as well as making a
lot of noise. The young cancer patients, Camila amongst them, began to show
interest in the music, the instruments and the new situation that presented itself
enabled them to experience all at a close distance. The band members held the
hands of the new artists and led them through the adventure of playing. Camila
announced, almost solemnly, ‘I want to see the drums.’ But the beginning of the
interaction was interrupted for a group photograph on stage. All had been
‘summoned’ to adopt a pose and smile looking at the camera. It was a moment of

__________________________________________________________________
great joy and emotion, various Banda Alana members shouted, ‘It was well worth
it!’ The young cancer sufferers did not display the same enthusiasm, but the joy
was there, manifested by the wish to remain on stage and to continue exploring the
musical instruments, except for Camila, who, still not used to the new condition
(not easy to stand on one leg, even when supported by two volunteers), got tired
and wanted to come down from the stage. When asked if she wanted to come and
see the drums, Camila hardly answered, mumbled something and, with love and
care, was taken back to her seat next to her mother and her brothers.
Some of the Banda Alana youths, however, were prepared to offer a surprise
for Camila. They got some of the drums and improvised a drum set next to Camila.
Pablo, a 17 year-old musician, placed the stools near the little girl. Camila’s eyes
oscillated from true joy to fear of the novelty. She looked at her mother, looked at
the stools and then grabbed them in the correct way as though they were old
familiar objects. The two little brothers cheered her and began to sing a tune,
timidly at the start. Camila had no doubts: she started to accompany their melody
and filled up the space around her with much noise.
Her audience comprised of her family, some voluntary workers and some
musicians followed the evolution of the unusual show with surprise and emotion.
At a certain point, Camila stopped drumming and said, ‘I’m going to invite the
Band to play at my school.’ Without being aware of what she was doing, Camila
began to utter her own new narrative. Laughing and forgetting the pain completely,
Camila lived and made us live in a community in which frailty, supported by a
group and transformed into will, became an initiative promoting life albeit for a
short period. The extreme frailty, ensuing from the illness, amputation, poverty,
was there but then transformed.
It is difficult to measure the extent of the effects provoked by a situation like
this. The vigorous and happy expression on Camila’s face when she announced
that she was going to invite the Band to play at her school, in my view, implies that
a cure is not necessarily physical but social. And it is based on the social ‘cure’ that
the physical cure may function.
An aspect, however, ought to be mentioned straight away: the interlocution that
took place between Camila and Pablo represents a pathway of re-appropriation by
means of language (verbal and non-verbal), of what impairment or illness is. That
exchange allowed the interlocutors to escape from what is rooted in the
predominant discourses of biomedical models on illness and impairment. Pablo
perceived Camila as somebody who battles against a disease, and not as a target of
pity, but respect. He also noticed that Camila requires care and needs to be
supported. Camila, on the other hand, perceived that the support that she can
receive is not aid and that it can be very good for her personal growth. She also
noted that she can be admired and her new body is not an abnormality. It is a
promising body.

__________________________________________________________________
4. Final Remarks
It is proper to ask who is served by the dichotomy of illness versus impairment.
The discursive construct of impairment or disability polarizes the issue along two
models that seem theoretically antagonistic. The social disability model, in its most
extreme conceptual framework, appropriates disability as a ‘form of expression,’
which does not require treatment but inclusive action. In the biomedical model,
disability is appropriated as a fact of nature or illness, and something that can
possibly be corrected. Behind the aversion to an impaired body, there is a deeply
rooted fear in every normal human being of losing part of their body. I would argue
that this is the soft version of the ontological fear of death, which can be
understood as a fear of losing the whole body for good.
It is worth asking in what measure the dichotomy operates in the drafting of
satisfactory public health and social care policies for the target groups at which
they are aimed. Without any wish to camouflage the differences in treatment that
each case requires, the dichotomy, in my view, has served to cloud the perception
of human frailty and the need to construe a broad and strong network of solidarity.
Notes
1
Susan Wendell, ‘Unhealthy Disabled: Treating Chronic Illnesses as Disabilities’,
Hypatia 16 (2001): 17-33.
2
Tatiana Piccardi, ‘Research on Curative Speech Acts Observed through a Long-
Term Initiative Involving Young Cancer Patients and Grieving Parents in São
Paulo, Brazil’, in Making Sense of Suffering: Theory, Practice, Representation,
eds. B. Hogue and A. Sugiyama (Oxford: Inter-Disciplinary Press), 2011.
3
Charles Taylor, ‘Democracy, Inclusive, Exclusive’, in Meaning and Modernity:
Religion, Polity, and Self, eds. R. Madsen, et al. (University of California Press,
2001), 182-194,
Bibliography
Piccardi, Tatiana. ‘Research on Curative Speech Acts Observed through a Long-
Term Initiative Involving Young Cancer Patients and Grieving Parents in São
Paulo, Brazil’. In Making Sense of Suffering: Theory, Practice, Representation,
edited by B. Hogue, and A. Sugiyama. Oxford: Inter-Disciplinary Press, 2011.
Taylor, Charles. ‘Democracy, Inclusive, Exclusive’. In Meaning and Modernity:

Religion, Polity, and Self, edited by Richard Madsen, William Sullivan, Ann
Swidler, and Steven Tripton, 182–194, University of California Press, 2001.

__________________________________________________________________
Wendell, Susan. ‘Unhealthy Disabled: Treating Chronic Illnesses as Disabilities’.

Hypatia 16 (2001): 17–33.
Tatiana Piccardi is co-founder of AHPAS (Helena Piccardi de Andrade Silva

Association) and researcher at the School of Philosophy, Language and Social
Studies - Federal University of São Paulo, Brazil. This research project is funded
by FAPESP (Fundação de Amparo à Pesquisa do Estado de São Paulo), Brazil, and
translated into English by the independent scholar and great friend Nadia Kerecuk,
to whom the author is deeply grateful.

Is the New Care Planning Approach to Long Term Conditions
Suitable for All Patients? The Case of Diabetes
Sally J. Giles and Penny Rhodes

Abstract
The number of cases of diabetes is expected to rise significantly, particularly in
certain ethnic and socially disadvantaged populations. Care planning offers people
active involvement in deciding, agreeing and owning how their diabetes will be
managed, of which a key element is patients setting personal goals in collaboration
with health professionals. This project aims to evaluate the implementation of care
planning for diabetes patients and a new electronic template designed to facilitate
the process. We semi-structured interview health professionals (n=20) and patients
(n=15), 3 months after the introduction of the care planning approach and 15
months later with the same participants. We find that before implementation,
health professionals thought that the likely efficacy of the care planning approach
would vary with levels of education, culture, English language competence, level
of health literacy and perceived locus of control, i.e., the traditional patriarchal
medical model, where ‘doctor knows best.’ After implementation, these concerns
appeared to have been confirmed in practice. Interviews with patients supported
the health professionals’ perspective. Few patients reported setting goals and most
did not notice that there had been a change in approach to their care. South Asian
patients and those with low health literacy tended to expect the doctor to direct
their care. On the other hand, white middle-class patients with higher health
literacy were more likely to engage in care planning. In conclusion, if care
planning is to be rolled out for all patients with long term conditions, we need to
ensure that some patients are not disadvantaged in the process.
Key Words: Care planning, patient centredness, long-term conditions, diabetes.
*****
1. Introduction
Diabetes remains a priority for the National Health Service (NHS) in the UK
where it affects approximately 2.8 million people, with an estimated 850,000
people who are not aware they have it. 1 The range of pathological consequences is
a key feature; poor control of blood glucose levels significantly increases the risk
of micro-vascular, peripheral neuropathic, and macro-vascular complications, 2
making diabetes one of the most complex long term conditions that affects nearly
every area of the body. Consequently, diabetes care encroaches on most areas of
NHS activity, using 10% of resources. Furthermore, The Health Care Commission
has reported that the number of diagnosed and undiagnosed cases is likely to rise
by 15% between 2001 and 2010. 3 Approximately 9% of this is due to an increase

168 Is the New Care Planning Approach to Long Term Conditions Suitable
__________________________________________________________________
in the number of obese people, and a further 6% from the increased ageing
population. The prevalence of diabetes is also increasing markedly in certain ethnic
and socially disadvantaged populations, but service improvements are not equally
distributed across socio-economic groups. 4 Moreover, it has been recognised that
patients with low levels of literacy struggle to manage their diabetes. 5
The National Service Framework (NSF) for Diabetes Care identified a series of
standards that demand that people with diabetes enjoy regular surveillance to
ensure early detection of physical complications as well as any psychological
problems, and be knowledgeable, active partners in their care. 6 In addition, the
process of diabetes care has received considerable attention and has led to the
development of person-centred approaches, such as care planning. 7 Care planning
is designed to address, year by year, the non-clinical, holistic aspects of care as
well as the clinical, and will enable education and support initiatives to be more
accurately targeted. It is not yet clear whether this approach is effective for all
groups of patients.
A recent study has shown that the use of personalised self-care action plans for
patients with long-term conditions can lead to an overall reduction in patient -
general practice contacts, and consequently, a potential reduction in healthcare
costs. 8 The Government has calculated that up to £2.7 billion per year could be
saved by enabling patient’s active participation in their self-care behaviour. 9 The
Care planning approach concords with the ambitions set out in Our Health, Our
Care, Our Say, 10 encouraging seamless services, especially in the care of long term
conditions, and innovative ways of integrating choice for patients, whatever their
background, and with the patient-responsive mechanisms advocated by Darzi in his
wide-ranging review of the NHS. 11 However, there is still uncertainty in the ability
of patient-centred care planning approaches per se to improve clinical outcomes 12
particularly in certain ethnic and socially disadvantaged populations. In this study
we begin to explore some of the barriers and facilitators to adopting a care
planning approach for diabetes patients.
2. Aim
This project aims to evaluate the implementation of care planning for diabetes
patients and a new electronic template designed to facilitate the process.
3. Method
A descriptive evaluation, using semi-structured qualitative interviews with
health professionals and patients both at the early implementation stage and 12
months following implementation of care planning and a new electronic template
for diabetes patients in 6 GP practices in a Primary Care Trust in the North of
England, with a diverse ethnic and socio-economic population. The practices were
speciality care clinics for diabetes, to which patients with poorly controlled

Sally J. Giles and Penny Rhodes 169
__________________________________________________________________
diabetes were referred, following an agreed protocol, from other practices in the
area.
In data collection Phase One, semi-structured qualitative interviews were
conducted with 20 practitioners (a nurse, GP and administrative worker at each
practice and, at 3 practices, a pharmacist, dietician, or health care assistant) and 8
patients (4 female and 4 male, all were White/British) 1-3 months following the
introduction of care planning and the new diabetes template. All interview
participants spoke English as a first language. The interviews with practitioners
focused on exploring their attitudes towards care planning and the new diabetes
template as well as the perceived barriers and facilitators to implementation. The
patient interviews focused on their satisfaction with and involvement in the
consultation process.
Each interview was conducted by a member of the research team in a private
room at the practice concerned. All interviews were digitally recorded and fully
transcribed for analysis. The interview schedule provided structure for the
interviews but allowed each researcher to explore the key issues.
In data collection Phase Two, semi- structured qualitative interviews exploring
the same topics as in Phase One were conducted with 15 of the 20 practitioners
interviewed in Phase One and with 15 patients (10 male and 5 female; 8
White/British, 4 Asian and 3 Other) approximately 12 months following the
implementation of care planning and the new diabetes template. Three of
practitioners were no longer working at the practice and a further 2 who had not
been interviewed in phase one were interviewed in their place. A different set of
patients was interviewed for phase two because the majority of the phase one
patients had been referred back to their original GP practice. Most participants
spoke English as a first language with the exception of 6 patients who spoke Urdu
(3) or Punjabi (3).
4. Data Analysis
For both phases the data were managed manually. Five transcripts were coded
independently by 3 of the researchers who conducted the interviews and, from this
exercise, a number of key themes emerged. For the purpose of this chapter we
focus on two of the key themes: variations in the likely efficiency of and
willingness of patients to engage in care planning.
5. Findings
Pre-implementation, nearly all health professionals expressed concern that the
care planning approach may not be suitable for all groups of patients and that it is
likely to be less successful with patients from certain groups. They thought that the
likely efficacy of the care planning approach would vary according to a number of
factors including: levels of health literacy; cultural barriers; and English language
competence.

__________________________________________________________________
Some patients preferred the health professionals to make decisions for them
about their care and favoured the traditional patriarchal medical model of care,
where ‘doctor knows best.’ This conflicts with the care planning approach which
emphasises the importance of patients making their own decisions regarding their
care. Practitioners thought that after a lifetime of conditioning in adopting a
passive role during consultations, many people would find it difficult to move
towards the new partnership approach envisaged in the care planning approach, in
which patients, rather than health professionals, take the initiative in suggesting
what their goals might be. One diabetes nurse remarked:
Maybe, like some are so used to it, everybody pushing them, do

this do this and others are sort of used to like their GP or their
healthcare professional telling them do this and come back and
we’ll do this, maybe they’ll expect that. Rather than them telling
you what they want how they want it to be and indeed what’s
best for them, like what part they can do best. Maybe they still
want the healthcare professionals to push them. You don’t really
know until you do it what the outcome is going to be put for
most of them it’s probably a good idea really because they’ll
have something to do, something to work round.
It was clear that health professionals were concerned about the universal
applicability of the care planning approach and whether all patients were willing
and able to engage in care planning. In particular, patients with low health literacy
and those of South Asian origin were considered to be those less likely to engage.
In addition, South Asian patients and those with low health literacy tended to
expect the doctor to direct their care, whilst white middle-class patients with higher
health literacy were more likely to engage in care planning.
Post-implementation, these concerns remained and appeared to have been
confirmed in practice. Patients also highlighted a number of potential barriers to
adopting a care planning approach, which support the health professionals’
perspective. These included:
The perceived locus of control. Some patients believed that it

should be the health professionals who lead the consultations and
make decisions about patients’ care. For example, a female
patient stated, “No, I think I would rather be told because they
know what they’re talking about better than me you know;
they’re more of an expert.”
Health literacy. It was also clear that some patients had a low
level of health literacy and this meant that they were less able to

__________________________________________________________________
engage in the care planning approach and to make decisions
about their care. A male patient remarked:
Like I said, it’s not a balance because the scale weighted heavy
on their side, they have got all knowledge, I gave no knowledge
so I can’t challenge what they are saying to me, can’t say well,
well. The only thing I can say is that if they start using, shall we
say, medical language, I might say put that in simple layman’s
terms so I can understand what you are saying, because you are
talking to me medical like you know and I don’t understand it.
So make it quite simple in layman terms. These big fancy words,
it doesn’t mean a thing to me and then I maybe be able to
respond to what they are saying but maybe a lot of people just
accept what they are without even understanding what they are
saying. If I don’t understand something I will say, I don’t
understand what you are saying at all tell me exactly what you
are saying.
Language. Patients who could speak very little English

recognised that it was difficult for them to get involved in the
care planning approach, particularly if the health professional
leading the consultation was not able to speak their language,
such as this non-English speak female patient:
If they cannot speak that language or understand and do not say

or ask anything and you got to tell her again and again then no.
To be honest as of now it is them understanding you and trusting
and co-operating with you on what you can manage to tell them.
Goal setting is a key element of the care planning approach, where patients are
expected to take the initiative in setting goals which are meaningful to them in
conjunction with health professionals. Few patients reported setting goals and most
did not notice that there had been a change in approach to their care.
Interviewer: Were you asked to set any kind of goals in your

consultation process say with your nurse or doctor?
Female patient: Well no. Apart from a long time ago, when the
nurse checked my blood sugar level, so nearer to that, I check
regularly like morning and evening and I can do that since I have
the time and sometimes in the afternoon as well when I do have
time.. But sometimes when I am out I cannot do it by taking it

__________________________________________________________________
out and now I am at a spot where I cannot do it. I was told to do
it sometimes before I eat and couple of times after your meal and
stuff like that and see what your readings are like.
Although there was an acknowledgement that goal setting was a good idea in
theory, health professionals admitted that they did not routinely set goals with all
patients and that patients were unlikely to suggest their own goals. Both health
professionals and patients thought that goal setting worked most effectively with
white middle-class patients who were often more educated about their condition
and more willing to engage in the process than other groups of patients.
6. Discussion
It is clear that care planning and goal setting fit in with the current policy
agenda and are seen as a possible way to reduce the costs of delivering care to
patients with long term conditions. Whilst some patients are in a position to engage
in this approach to care and are taking responsibility for their own health care, it is
clear that the efficiency of care planning and the willingness of patients to engage
in the process vary considerably. Some groups of patients, particularly those with
low health literacy, poor standard of English, and of certain ethnic groups are less
able or willing to engage in the process.
The current approach to care planning suggests a universal approach for all
diabetes patients and appears to take little account of any differences between
patient groups. If care planning is to address the needs of all groups of patients and
provide a morally as well as financially viable approach to the care of diabetes
patients, it must consider the needs of all patients. This will only be achieved
through adopting a tailored approach, where the needs of the various groups of
patients are considered.
Although limited, this evidence suggests that care planning may work well with
many patients but may be less appropriate for those from certain groups, such as
patients of South Asian origin, those with low health literacy and low levels of
education. Indeed, those are groups who are most at risk of poorly controlled
diabetes and developing complications. Our findings suggest that, although a
valuable tool, care planning should not be seen as an easy solution to the ‘diabetes
epidemic’ and may not be equally suitable for all patients.
7. Limitations
The GP practices involved in this study were all satellite practices offering an
enhanced service and were therefore not representative of GP practices in general.
In particular, health professionals in specialist satellite practices may not be
representative of health professionals in non-satellite practices as they are likely to
be more skilled in and knowledgeable about diabetes care. The resources that

__________________________________________________________________
satellite practices are able to offer their patients are likely to be greater than those
of non-satellite practices.
There was also a risk of selection bias among patients because patients invited
to take part in interviews were selected by practice staff and may not have been
representative and patients who agreed to be interviewed may differ from those
who did not. Due to limited resources, it was not possible to interview a large
number of patients who did not speak English.
8. Conclusion
If care planning is to be rolled out for all patients with long term conditions, we
need to ensure that some patients are not disadvantaged in the process. This may be
achieved in adopting a more tailored approach to suit the needs of the various
patient groups.
Notes
1
Diabetes UK (2009), ‘What is Diabetes?’, http://www.diabetes.org.uk/Guide-to-
diabetes/Introduction-to-diabetes/What_is_diabetes/.
2
Diabetes Control and Complications Trial Research Group, ‘The Effect of
Intensive Treatment on The Development and Progression of Long-Term
Complications in Insulin-Dependent Diabetes Mellitus’, New England Journal of
Medicine 329, No. 14 (1993): 977-986.
3
Health Care Commission, Report on the Primary Care of People with Diabetes
(2007), accessed May 3, 2008,
http://www.healthcarecommission.org.uk/newsandevents/pressreleases.cfm.
4
Christopher Millett, Sonia Saxena, Anthea Ng, et al., ‘Socio-Economic Status,
Ethnicity and Diabetes Management: An Analysis of Time Trends Using the
Health Survey for England’, Journal of Public Health 29, No. 4 (2007): 413-419.
5
Erin van Scoyoc and Darren A. DeWalt, ‘Interventions to Improve Diabetes
Outcomes for People with Low Literacy and Numeracy: A Systematic Review’
(2010) .
6
Department of Health, National Service Framework for Diabetes Care (London:
DoH, 2002).
7
The Care Planning approach puts people with long term conditions firmly in the
driving seat of their care and supports them to self-manage. It does this firstly by
making routine consultations between clinicians and people with long term
conditions truly collaborative, and then ensures that the local services people
identify are made available through commissioning. It offers people active
involvement in deciding, agreeing and owning how their diabetes will be managed,
of which a key element is setting personal goals in collaboration with health
professionals. Also see: Sharyn Maxwell, Pieter Degeling, Roslyn Sorrenson,

__________________________________________________________________
Barbara Coyle, ‘Propensity to Pathway: The Systematisation of Care and Its

Effects’, Journal of Health Services Research and Policy (2008).
8
Shahid Ali, Julia Coletta and Richard Pope, ‘QIPP and Care Plans for Long-Term
Conditions’, Health Services Journal (2010).
9
Care Quality Commission, People Need Health and Social Care Services That
Are More Joined-Up and Person-Centred, Says CQC, accessed February 2010,
http://www.cqc.org.uk/newsandevents/newsstories.cfm?widCall1=customWidgets.
content_view_1&cit_id=35862.
10
Department of Health, Our Health, Our Care, Our Say (London: DoH, 2006).
11
Lord Ara Darzi, High Quality Care for All. NHS Next Stage Review Final Report
(London: DoH, 2008).
12
Simon A. Lewin, Zoe C. Skea and Vikki Entwhistle, ‘Interventions for Providers
to Promote a Patient-Centred Approach in Clinical Consultations’, Cochrane
Database of Systematic Reviews (2001).
Bibliography
Ali, Shahid, Julia Coletta, and Richard Pope. ‘QIPP and Care Plans for Long-Term
Conditions’. Health Services Journal (2010).
Care Quality Commission. People Need Health and Social Care Services That Are
More Joined-Up and Person-Centred, Says CQC. Accessed February 2010.
http://www.cqc.org.uk/newsandevents/newsstories.cfm?widCall1=customWidgets.
content_view_1&cit_id=35862.
Crosson, Jesse C., Pamela A. Ohmand-Strickland, and Karissa A. Hahn.

‘Electronic Medical Records and Diabetes Quality of Care: Results From a Sample
of Family Medicine Practices’. Annals of Family Medicine 5 (2007): 209–215.
Darzi, Lord Ara. High Quality Care for All. NHS Next Stage Review Final Report.
London: DoH, 2008.
Delpierre, Cyrille, Lise Cuzin, and Judith Fillaux. ‘A Systematic Review of

Computer-Based Patient Record Systems and Quality of Care: More Randomised
Clinical Trials or A Broader Approach?’ International Journal of Quality in Health
Care 16, No. 5 (2004): 407–416.
Department of Health. National Service Framework for Diabetes Care. London:

DoH, 2002.

__________________________________________________________________
—––. Our Health, Our Care, Our Say. London: DoH, 2006.
Diabetes Control and Complications Trial Research Group. ‘The Effect of

Intensive Treatment on the Development and Progression of Long-Term
Complications in Insulin-Dependent Diabetes Mellitus’. New England Journal of
Medicine 329, No. 14 (1993): 977–986.
Diabetes UK (2009). ‘What is Diabetes?’ http://www.diabetes.org.uk/Guide-to-

diabetes/Introduction-to-diabetes/What_is_diabetes.
Haidet, Paul, and Debora A. Paterniti. ‘Building a History Rather Than “Taking”
One: A Perspective on Information Sharing During the Medical Interview’.
Archives of Internal Medicine 163 (2003): 1134–1140.
Health Care Commission. Report on the Primary Care of People with Diabetes
(2007). Accessed March 5, 2008.
http://www.healthcarecommission.org.uk/newsandevents/pressreleases.cfm.
Howie, John G. R., and Stewart W. Mercer. ‘CQI-2 - A New Measure of Holistic
Interpersonal Care in Primary Care Consultations’. British Journal of General
Practice 56 (2006): 262–268.
Lewin, Simon A., Zoe C. Skea, and Vikki Entwhistle. ‘Interventions for Providers
to Promote a Patient-Centred Approach in Clinical Consultations’. Cochrane
Database of Systematic Reviews (2001). Art. No. CD003267. Doi:
10.1002/14651858.CD003267.
Maxwell, Sharyn, Pieter Degeling, Roslyn Sorrenson, and Barbara Coyle.

‘Propensity to Pathway: The Systematisation of Care and Its Effects’. Journal of
Health Services Research and Policy (2008).
Millett, Christopher, Sonia Saxena, Anthea Ng, Arch Mainous III, and Azeem
Majeed. ‘Socio-Economic Status, Ethnicity and Diabetes Management: An
Analysis of Time Trends Using the Health Survey for England’. Journal of Public
Health 29, No. 4 (2007): 413–419.
Montori, Victor M., Sean F. Dinneen, and Colum A. Gorman. ‘The Impact of
Planned Care and a Diabetes Electronic Management System on Community-
Based Diabetes Care: The Mayo Health System Diabetes Translation Project’.
Diabetes Care 25, No. 11 (2002): 1952–1957.

__________________________________________________________________
Murray, Elizabeth, Joanne Burns, and Sharon See. ‘Interactive Health Applications
for People with Chronic Disease’. Cochrane Database of Systematic Review 4
(2005).
Nease, Donald E., Jr., and Lee A. Green. ‘Clinfotracker: A Generalizable

Prompting Tool for Primary Care’. Journal American Board Family Practice 16,
No. 2 (2003): 115–123.
O’Connor, Patrick J., Lauren A. Crain, William A. Rush, JoAnn M. Sperl-Hillen,

Jay J. Gutenkauf, and Jane E. Duncan. ‘Impact of an Electronic Medical Record on
Diabetes Quality of Care’. Annals Family Medicine 3, No. 4 (2005): 300–306.
Patton, Michael Q. Utilization-Focussed Evaluation. London: Sage, 1997.
Renders, Carry M., Gerlof D. Valk, Simon J. Griffin, Edward H. Wagner., Jacques
T. van Eijk, and Willem J. J. Assendelft. ‘Interventions to Improve The
Management of Diabetes Mellitus in Primary Care, Outpatient and Community
Settings’. Cochrane Database Systematic Reviews (2001).
Sperl-Hillen, JoAnn M., and Patrick J. O’Connor. ‘Factors Driving Diabetes Care
Improvement in a Large Medical Group: Ten Years of Progress’. American
Journal Managing Care 11 (2005): S177–S185.
Van Scoyoc, Erin, and Darren A. DeWalt. ‘Interventions to Improve Diabetes

Outcomes for People with Low Literacy and Numeracy: A Systematic Review’.
(2010).
Sally J. Giles is a health services researcher at the Bradford Institute for Health
Research, Bradford, UK. She has a background in Social Science and during the
last 10 years her research has mainly focussed on the quality and safety of patient
care, both in the hospital and primary care setting.
Penny Rhodes has experience as a practitioner in both health and social services
and has worked in the field of health services research for many years, most
recently in the Quality and Safety Team at the Bradford Institute for Health
Research. Her recent work includes an investigation of the health beliefs,
experiences and service needs of people of South Asian origin with epilepsy, a
video and interview-based study of the use of computer templates in diabetes
consultations, a critical review of crisis resolution and home treatment provision in
one UK health region.

General Practitioner Perceptions of Chronic Illness Place People
Somewhere between Health and Illness
Marjan Kljakovic
Abstract
One of the jobs of a general practitioner is to pick the unusual case from the
routine. The borderland is a place populated by people with a mix of unusual and
routine cases. This chapter argues that general practitioners encounter two
problems when they pick cases for the borderland. The first is the problem of
prediction on the basis of small numbers. The second is the problem of belief
perseverance. The argument will be centred on picking cases of asthma as an
example of chronic illness commonly encountered in general practice.
Key Words: General practitioner, perception, belief perseverance, prediction

based on small number, asthma, chronic illness.
*****
1. Introduction
Our research has shown that health professionals place chronic illness
somewhere in the borderland between health and illness. 1 They think of chronic
illness as made up of a cluster of multiple features that include causes, symptoms,
consequences, concerns, and the emotional response to chronic illness.
The borderland is a place populated by people with a mix of unusual and
routine cases of chronic illnesses. This chapter will focus on asthma as the chronic
illness patients often bring to their general practitioner. 2 One of the jobs of a
general practitioner is to pick the unusual case from the routine. General
practitioners encounter two problems when they pick their cases of asthma. The
first is the problem of prediction on the basis of small numbers. The second is the
problem of belief perseverance.
2. The Problem of Small Numbers

Empirical studies show a widespread and pervasive belief in small numbers.
This belief arises from strong intuitions people have about random sampling.
Tervsky and Kahneman argue a belief in small numbers is wrong in fundamental
aspects. 3 The belief has had unfortunate consequences in the course of scientific
enquiry. The believer in the law of small numbers exhibits certain behaviours that
tend to reinforce their belief. These include an overestimation of the power of a
small sample, a belief about trends, and a belief on the stability of observed
patterns. Finally, believers rarely attribute deviation of results that arise from
variability inherent in sampling methods. Believers favour what they expect of a
sample. Any deviation of results is given a causal explanation.

178 General Practitioner Perceptions of Chronic Illness
__________________________________________________________________
Kornblith argues that the human tendency to predict on the basis of small
numbers would be reasonable if populations were perfectly uniform. 4 The fact is
the world does not produce uniform populations. People are insensitive to relevant
features of the world and respond at a coarse-grained level to the facts of their
environment. Our study of general practitioners’ prescribing of antibiotics for
asthma is a powerful example of general practitioners responding at a coarse-
grained level. 5 Their antibiotic prescribing behaviour for the management of
asthma was irrational. Asthma is an allergic response to many triggers on the
respiratory system and bacteria are a rare cause. 6 Therefore prescribing antibiotics
to eradicate bacteria is an irrational act in terms of treating the causes of asthma
symptoms. What general practitioners do is to respond at a coarse-grained level
because they write prescriptions in response to non-specific reasons such as a lack
of time or patient pressure in the consultation.
Kornblith claims there is a harmony between the causal structure of the world
and the conceptual structure of human minds. 7 Kornblith is not arguing for a
perfect one-to-one match between the world and human minds. Rather, Kornblith
claims that we have evolved a mind that does a good enough job. We look beyond
the superficial and classify by kinds. We are sensitive to certain features of events
in the world. We cluster those features in our minds, and then project them back
onto nature.
Kornblith quotes experimental studies showing humans have a natural tendency
to observe co-variation. 8 We have adapted to notice covariance of single features
only when there is a very high level of sensitivity. In other words, we do better at
noticing multiple co-variations of features, rather than single co-variation. For
example, in our research we have found that a general practitioner is less likely to
notice asthma in a child when there is only one symptom such as a cough. 9
However, a general practitioner is more likely to notice the combination of
symptoms such as an unwell-looking child, plus a night time cough, plus wheezy
breathing. The reason for the difference is that the level of sensitivity is much
lower in situations of multiple co-variations. Kornblith argues we have adapted to
noticing multiple co-variation. We do not randomly sample the world, rather we
sample as we encounter the various features in the world.
3. The Problem of Belief Perseverance

Kornblith also argues that data driven belief has a better outcome than theory
driven belief. 10 This is because a belief based on a theory has a poor co-variation.
It is human to have a tendency toward belief perseverance. Let us imagine an
example of the general practitioner who prescribes antibiotics because a belief in
the theory that all fevers associated with cases of acute asthma are caused by a
bacterial infection. Such a general practitioner knows their outcome for treating
asthma is worse than a colleague who believes that viruses cause the vast majority
of fevers.

Marjan Kljakovic 179
__________________________________________________________________
Despite the advantage of data driven belief, Kornblith argues that there is an
evolutionary advantage for having belief perseverance. Let us imagine that we
encounter a dangerous event in the world. Each new encounter with the event
could be avoided, ignored, or manipulated because of the perseverance of the belief
that the outcome of the first experience will be repeated in future occasions. Belief
perseverance taints data by performing this kind of sifting process. Let us imagine
a general practitioner encountered a dangerous event, namely, a patient suddenly
died with acute asthma while in the consultation room. This patient also had a
fever and on autopsy was found to have a bacterial related infection. In the future,
the general practitioner is likely to believe that asthmatic events associated with a
fever should be treated with antibiotics. Interviews with general practitioners who
have had such dramatic experiences found that they use such experiences to justify
their theory that prescribing antibiotics should be done routinely in patients who
have a fever and asthma. 11 The virtue of this belief perseverance is that it has the
effect of consolidating experience and it is protective.
Kornblith argues we are sensitive to features of events that remain in a
homeostatic cluster in the world - in other words they are found in situations of
multiple co-variations. Kornblith’s concern was to see if there was coherence
between our tendencies for making natural kinds in our minds with the natural
kinds found in nature. Once we form these features of a natural kind in our mind,
we have a natural tendency to project those features of a kind that, in fact, are
shared by natural kinds in the world.
Our observational study of general practitioner behaviour found that general
practitioners are more likely to notice chronic illness as a clustered feature of a
natural kind summarised by the words ‘this patient has asthma.’ 12 General
practitioners are less likely to notice a particular feature summarised by the words
‘this patient has a tachycardia associated with asthma.’ The observation of a case
of asthma is an observation set in a framework of multiple co-variations, whereas
the observation of tachycardia (a rapid pulse) is an observation of a singular co-
variation associated with asthma.
4. Picking the Routine from the Unusual

One of the important judgements made by general practitioners occurs when
they distinguish between whether a case is routine or whether a case is unusual.
Cases of patients dying of asthma are not routine. They have multiple features that
compel general practitioners to take notice. This compulsion is derived from basic,
human, psychological needs such as grief, or the fear of the unknown, or the fear of
death, or the curiosity that drives a general practitioner to find explanations if they
were uncertain as to the cause of death. Fortunately, the borderland is not
populated by many patients dying of asthma. Instead, most cases encountered by
general practitioners would be judged to be routine, rather than unusual cases of
asthma.

__________________________________________________________________
The danger of populating the borderland with routine cases is that the general
practitioner might not build a persevering belief about asthma as a chronic illness.
Labelling a case as routine is likely to lower a general practitioner’s sensitivity to
the multiple co-variations that might be found in a case. There might be a tendency
to gloss over the cluster of multiple features found in a case of asthma as chronic
illness. Our work describing a gap between stated and recorded behaviour when
managing asthma indicates there are many features that general practitioners do not
record, gloss over, or simply forget. 13 There appeared to be little to compel the
general practitioner to take notice of asthma as a chronic illness.
Evidence that general practitioners do not take notice of asthma as a chronic
illness is found in Medicare data on care plans for asthma in Australia. 14 A care
plan for asthma requires that the general practitioner manage cases of asthma over
the long term. When we look, we find that the majority of general practitioners do
not manage asthma in this way. We find a low volume of claims for care plans
with only about 20 claims made per 100,000 general practitioner attendances per
year. This low volume was produced in the context of a high prevalence of asthma
among patients attending general practice - a strong indication that Australian
general practitioners were not taking notice of asthma as a chronic illness.
The reason why it matters that a general practitioner takes notice, is that by
doing so, the general practitioner signals the case promises interesting explanatory
possibilities. When the general practitioner thinks the case is merely routine, the
case is glossed over and nothing is uncertain. The case will have minimal
explanatory possibilities because it is routine. In contrast, an experience of a case
of death by asthma promises a host of interesting explanatory possibilities for the
uncertainties surrounding the death. When a case is routine, then there is no such
promise.
Fortunately the borderland is filled with cases that consolidate the lived
experiences of both general practitioners and patients. There are many instances
where a patient acknowledges that their relationship with the general practitioner is
a positive experience and thereby protective despite the belief perseverance that the
case is routine. Fortunately also, there is strength found in small numbers. On
average, most general practitioners look after small numbers of patients with
chronic illnesses. For example, there may be less than 50 adult patients with
asthma registered in one general practice. Most patients would have mild asthma,
some would have moderately severe asthma, and a few would need the care of the
local hospital. Finally, from a patient perspective, most patients encounter a very
small number of general practitioners.
In conclusion, general practitioners place patients in the borderland between
health and illness by choosing whether a patient counts as a routine or unusual
case. The choice is between sometimes perceiving the patient as having an illness
so serious that it would kill them, and often perceiving an illness that is not quite

Marjan Kljakovic 181
__________________________________________________________________
normal, but nor is it affecting their life so much that they need to worry about it.
Such perceptions occur in the context of small numbers and belief perseverance.
Notes
1
Laurann Yen, et al., ‘Health Professionals, Patients and Chronic Illness Policy: A
Qualitative Study’, Health Expectations (2010).
2
Robert Pearson, Asthma Management in Primary Care (Oxford: Radcliffe
Medical Press Ltd., 1990).
3
Arnos Tversky and Daniel Kahneman, ‘Belief in the Law of Small Numbers’,
Psychological Bulletin 2 (1976): 105-110.
4
Hilary Kornblith, Inductive Inference and Its Natural Ground (Cambridge,
Massachusetts: The MIT Press, 1995), 82-99.
5
Marjan Kljakovic, ‘General Practitioner Prescribing of Antibiotics for Asthma’,
British Journal of General Practice 48 (1998): 1773-1774.
6
Richard Beasley, et al., ‘Viral Respiratory Tract Infection and Exacerbations of
Asthma in Adult Patients’, Thorax 43 (1988): 679-683.
7
Kornblith, Inductive Inference, 93.
8
Ibid., 85.
9
Kljakovic, ‘Prescribing of Antibiotics’, 1773.
10
Kornblith, Inductive Inference, 98.
11
Kljakovic, ‘Prescribing of Antibiotics’, 1774.
12
Ibid., 1774.
13
Marjan Kljakovic and Deborah McLeod, ‘Management of Acute Asthma: Gaps
between Opinion and Recorded Action by General Practitioners’, International
Journal of Quality Health Care 9 (1997): 405-412.
14
Nicholas Glasgow, et al., ‘Australia In: Managing Chronic Conditions:
Experience in Eight Countries’, in Managing Chronic Conditions: Experience in
Eight Countries, eds. Elin Nolte, Cécile Knai and Martin McKee (Copenhagen:
World Health Organisation European Observatory for Health Systems and Policies,
2008), 181.
Bibliography
Beasley, Richard, E. D. Coleman, Y. Hermon, P. E. Holst, T. V. O’Donnel, and M.
Tobias. ‘Viral Respiratory Tract Infection and Exacerbations of Asthma in Adult
Patients’. Thorax 43 (1988): 679–683.

__________________________________________________________________
Glasgow, Nicholas, Nicholas Zwar, Mark Harris, Iqbal Hasan, and Tanisha
Jowsey. ‘Australia In: Managing Chronic Conditions: Experience in Eight
Countries’. In Managing Chronic Conditions: Experience in Eight Countries, eds.
Ellen Nolte, Cécile Knai, and Martin McKee, 181. Copenhagen: World Health
Organisation European Observatory for Health Systems and Policies, 2008.
Kljakovic, Marjan, and Giri Mahadevan. ‘General Practitioner Prescribing of

Antibiotics for Asthma’. British Journal of General Practice 48 (1998): 1773–
1774.
Kljakovic, Marjan, and Deborah McLeod. ‘Management of Acute Asthma: Gaps

between Opinion and Recorded Action by General Practitioners’. International
Journal of Quality Health Care 9 (1997): 405–412.
Kornblith, Hilary. Inductive Inference and Its Natural Ground. Cambridge,

Massachusetts: MIT Press, 1995.
Pearson, Robert. Asthma Management in Primary Care. Oxford: Radcliffe Medical

Press, 1990.
Phillips, Christine B., Helen Toyne, Karen Ciszek, Robyn G. Attewell, and Marjan
Kljakovic. ‘Trends in Medication Use for Asthma in School-Entry Children in the
Australian Capital Territory, 2000-2005’. Medical Journal Australia 187 (2007):
10–13.
Tversky, Aron, and Daniel Kahneman. ‘Belief in the Law of Small Numbers’.
Psychological Bulletin 2 (1976): 105–110.
Yen, Laurann, James Gillespie, Yun-Hee Jeon Rn, Marjan Kljakovic, Jo-anne
Brien, Stephen Jan, Elin Lehnbom, Carmen Pearce-Brown, and Tim Usherwood.
‘Health Professionals, Patients and Chronic Illness Policy: A Qualitative Study’.
Health Expectations (2010): 1–11.
Marjan Kljakovic is a Professor of General Practice at the Australian National

University medical school. In spite of a long history of precariously balancing
academic work with clinical general practice, his research output has been devoted
to understanding the quality of clinical explanations and actions undertaken by his
general practitioner colleagues when engrossed in patient centred care.


Chronicity Enquiries Making Sense of Chronic Illness

Uploaded by

Document Information

Copyright

Available Formats

Share this document

Share or Embed Document

Sharing Options

Did you find this document useful?

Is this content inappropriate?

Copyright:

Available Formats

Chronicity Enquiries Making Sense of Chronic Illness

Uploaded by

Copyright:

Available Formats

Chronicity Enquiries

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

James Arvanitakis Simon Bacon

A Probing the Boundaries research and publications project.

The Making Sense Of Hub

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

Making Sense of Chronic Illness

Zhenyi Li and Sara Rieder Bennett

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

The Inter-Disciplinary Press is part of Inter-Disciplinary.Net – a global network

All rights reserved. No part of this publication may be reproduced, stored in a

Inter-Disciplinary Press, Priory House, 149B Wroslyn Road, Freeland,

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

Section 1 The Traditional Stories

Chronic Illness Interpreted in ‘Inner Canon of Yellow

Sublime Illness: Friedrich Schiller’s Chronic Lung Disease

Section 2 The Personal Stories

Mandated Motherhood: Biopsychosocial Aspects of Coping

Psychosocial Support in Multiple Sclerosis: The Confidant

Fear of a Living Death: A Foucauldian Discourse Analysis

Health and Illness Representations in Patients with

Managing Multiple Chronic Illnesses: Narratives of Puerto

Section 3 The Visual and Virtual Stories

Children’s Experience of Living with Cancer 79

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

Lifting the Lid of Pandora’s Box: Alzheimer’s Disease in

Passing Strange: Illness, Shame and Performance 111

Depression, Disgrace and Categorical Distinctions:

Section 4 The Caregivers’ Stories

Improvisation: Five Capacities for Coping with Trauma

Does Social Support and Self-Esteem Determine

Illness or Impairment? Human Frailty as a Guiding Axis:

Is the New Care Planning Approach to Long Term

General Practitioner Perceptions of Chronic Illness

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

Zhenyi Li and Sara Rieder Bennett

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

The Traditional Stories

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

Key Words: Chronic illness, interpretation, Inner Canon of Yellow Emperor,

1. Chronic Illness: Multiple Ways to Interpret

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

2. Chronic Illness: Dynamic Co-Existence Interpretation

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

3. Comparison with Other Ways of Interpretation

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

Geist-Martin, Patricia, Barbara Sharf, and Natalie Jeha. ‘Communicating Healing

Hall, Edward T. Beyond Culture. New York: Anchor Books, 1976.

Lupton, Deborah. Medicine as Culture: Illness, Disease and Body in Western

Waxler-Morrison, Nancy. ‘Introduction’. In Cross-Cultural Caring: A Handbook

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

Zhenyi Li, PhD, is an Associate Professor teaching Intercultural Communication

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

Key Words: Friedrich Schiller, sublime, sublimation, philosophy, pathography,

1. The Writer and His Illness

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

Li Zhenyi and Sara Rieder Bennett - 978-1-84888-150-1

I have been set back in my work again by almost 10 days by a