Topic 4 The Illness Experience

SHDH 2040 The Sociology for Health Studies

Lecturer: Dr. Lau Siu Lai

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Lecture Flow
1. Illness and Self
2. Lay Conception of Health
3. Lay Understanding of Illness
4. Pain and Its Psychosocial Dimension
4.1 Pain as a Biosocial Phenomenon
4.2 Sociocultural Variations in Pain Expression
4.3 Chronic Pain
4.4 Somatization
5. Disability: The politics of Impairment
5.1 Disability, Chronic Illness, and the Social Organization of
Space and Time
5.2 Disabling Attitudes and Sense of Self
5.3 Disability as a Minority Status
5.4 Disability Civil Rights Movements: Recapturing Self and Access

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Discussion
 When would we discover that we fall ill?

 What we have taken for granted as a healthy

person?

 Is there any relationship between the

experience of being ill and our self-concept?

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1. Illness and self
 Our very sense of who we are is intimately connected
with our bodies and their routine functioning.

 Being ill is disruptive and disordering.

 Some illnesses would have damaging effect on the

person’s identity and sense of self.

 The experience of illness reminds us of our limitation

and dependencies.
◦ Present
◦ Potential
◦ Ultimate mortality

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1.1 Illness and damage on social
relationship
 The illness experience is much more than a
biophysical event.

 It has far-reaching implication:

◦ Social
◦ Emotional
◦ Moral
◦ Spiritual

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 The distinction between disease and illness is
important. (i.e. physical vs subjective
dimension )

 Doctors of Western medicine have been trained

to focus almost exclusively on disease, they have
difficultly in dealing with the illness experience.

 Which of the following condition would be the

most damaging on one’s identity?
◦ Mild
◦ Acute
◦ Temporary
◦ Chronic
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 illness is especially damaging to the self
when it is experienced as overwhelming,
unpredictable and uncontrollable.

 Because it paralyzes the person’s ability to

manage life, to plan, and to act.

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 Loss of body part, chronic illness and ill that
result in ongoing social marginality seem to be
more damaging on one’s sense of self.

 Loss of body part is a profoundly disruptive

experience:
◦ It represents loss of integrity
◦ It robs the patients’ future

 Chronic illness and pain force the sufferer to

come to new terms with the experience of time.
◦ Radical reassessment on capacities
◦ Sense of loss
◦ Heightened self-consciousness

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 Much of our web of social relationships is
expected to fall into the principle of
reciprocity.

 Loss of independency is threatening because:

◦ Damage of pride in self-sufficiency
◦ Failure of participate as an equal in important social
relationship
 久病床前無孝子
https://
hk.entertainment.appledaily.com/entertainment/daily/article/2019100
3/20779716

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1.2 The vicious cycle of social isolation

Pain and treatment become a focus of attention

 withdraw into oneself
 lack of access to everyday activities
 less socialize and isolation
 the others withdraw
 withdrawal of the patient

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1.3 Chronic Illness and Social Stress
 In a culture that stress self-control, productivity,
vigor, and beauty, disability, aging and losses of
control are especially damaging.

 Chronic illnesses experience requires individual,

families, and personal networks to continually
confront problems of uncertainty, dependency,
and understanding.

 It also necessitates the negotiation of new role

relationships with others.

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 This may result in outright conflict or
rejection.

 Seriously disruptive illnesses are likely to

evoke further interpretation about the
meaning of life, moral responsibility,
suffering and death.

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2. Lay conceptions of health
 Lower class: absence of illness and normal
functioning.

 Middle class: more about well-being, sense of

being self-control, self-discipline and will
power.

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3.Lay understanding of illness
 Cross-cultural research suggests that several
explanatory logics are used by laypersons,
including those in modern western cultural
settings.
◦ Invasion
◦ Degeneration
◦ Misalignment of body structures
◦ Failure to maintain balance and order

 Why must I suffer? Why now?

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4. Pain and its psychosocial
dimensions
 Pain is a form of biofeedback essential to our
survival, a waring system for the body.

 It can also be a terrible existential reality, a

source of fear and anxiety.

 The clinical reality of pain is complex, and

involves three component:
◦ A person’s actual sensation of pain;
◦ A person’s tolerance threshold for pain;
◦ A person’s expression of pain.

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4.1Pain as a biosocial phenomenon
 Pain is obviously a sensation.

 But it is imbued with meaning. There are

good pains and bad pains.
◦ good pain: acceptable consequence of well-done
exercise. (e.g. wounded soldiers)
◦ bad pain: pain takes on meaning as a form of
suffering. (e.g. something that accompanies
diseases or a serious injury)

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 Pain is a unique as medical phenomenon. Its
measurement depends heavily on patients’
intended or unintended expressions of the
pain they are feeling.

 Placebos, do not merely relieve pain “in the

mind” but can also generate physical changes
by stimulating the release of pain-relieving
endorphins.

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 Pain as biopsychosocial and cultural
dimensions.

 Difference in tolerance threshold for pain:

◦ Male and female
◦ Different ethnicities

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4.2 Sociocultural variations in pain
expression
 Pain expression refers to how a person shows
and behaviorally responds to pain.

 The ability to control the social presentation

of pain may be perceived as a sign of one’s
moral status (i.e. one’s “manhood,” or
reliability).

 Our culture teaches that pain can and should

be avoided, and we tend to medicate it
extensively.
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 Sometimes we must quickly learn to manage
our pain expression in order not to threaten a
group’s morale.

 People from varying cultural backgrounds

present pain, in different ways.

 Jewish and Italian were particularly vocal and

disturbed about their pain. Irish patients were
more likely to deny pain.

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 Expressing pain ≠ feeling pain

 Responses to other people’s pain expressions

are influenced by cultural assumptions about
what those expressions mean.

 E.g. Italians expressed their pain so

dramatically, non-Italian doctors tended to
question the credibility of their Italian
patients, interpreting their problems as
“psychiatric”.

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Discussion: Which picture makes you feel
more painful? Can you figure out the reasons?

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 Women were also given more minor
tranquilizers and antidepressants than men.

 Health workers were more likely to believe

that women’s pain was more likely to be
psychogenic.

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4.3 Chronic pain
 Ongoing, chronic pain often has profound
implications for a sufferer’s life and very identity.

 Lack of hope and optimism

How does one deal with pain and live life as normally as
possible?

 People in chronic pain often face invalidating

responses from others.

 It goes more serious if their pain is not apparent.

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 Invalidating responses often come from doctors,
particularly when they are frustrated by their
inability to treat the pain effectively.

 Chronic pain challenges doctors’ sense of

competence and control.

 Double-bind situation of the chronic pain

sufferers:
◦ Concealing signs of their pain reduces the likelihood
that their claims to being in pain will be taken seriously.
◦ Regular display and dramatize of pain risk wearing
down other people’s sympathy.

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4.4 Somatization
 Somatization is the communication of personal
and interpersonal problems in a physical idiom of
distress and a pattern of behavior that
emphasizes seeking of medical help.

 Pain may be physical in origin but sustained and

amplified by socio-psychological factors.

 Labeling an illness psychosomatic or psychogenic

de-legitimates people’s real suffering. E.g.
posttraumatic stress disorder

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 Pain is a legitimate reason to assume the sick
role.

 Pain is one way people communicate social

distress or a sense of social powerlessness.

 Sometimes being in pain may be a way of

avoiding difficult decisions.

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5. Disability: The politics of
impairment
 Impairment: the loss of some physiological or
anatomical function.

 Disability: the consequence of such an

impairment.

 Handicap: negative connotations to describe

the situation.

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 Impairment is relatively verifiable in
“objective” medical terms.

 Disability, however, is not as easily defined

separated from the social and cultural
context of impairment. Examples:
◦ Trachoma in a small Egyptian village
◦ Deaf in one of a cities in Massachusetts( 麻省 ) in
1940s
◦ World War II experience

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 Disabilities are not as uncommon as one
believes. “2:1”

 Categorizing people as disabled has

implications for social policy which creates
misleading distinctions.

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5.1 Disability, chronic illness, and
the social organization of space
and time
 The organization of the spaces in which
people move and the time arrangements of
their activities are related to the quality of life.

 Building codes, government ordinances,

financial considerations and many other
factors determine the space in which we work,
live and play.

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 While technical advances have made it
possible for many people with disabilities to
survive and function, such advances have not
generally been applied to the design of
public, work, and living environments.

 We live increasingly in human-made, artificial

spaces that are not currently adapted to a
wide spectrum of bodies. (chairs, lifts, toilets)

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Discussion
 Have you heard of Gender free toilet?

 What’s your view on it?

 How you perceive the way design of a toilet

can have impact on our sense of selves?

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 People with chronic impairments do not usually
challenge disabling time limitations and pressures.

 They typically assume such arrangements to be

natural and given.

 People come to believe that their inability to

squeeze their bodies and rhythms of movements
into inadequate social-spatial arrangements are
their personal inadequacy.

 Disabling environments and attitudes thus

contribute to a loss of sense of self.

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5.2 Disabling attitudes and sense of
self
 A stigma is a deeply discrediting attribute
that can brand a person as less than human,
and publicly discreditable.

 Stigma is a social construction that depends

on person and context.

 The mass media perpetuate stereotypes that

associate disability with evil and criminality.

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 Problems also emerged by over-stress on
heroic role models.

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 We tend to neglect many dimensions of the
need of the disabled.

 The most deep-seeded neglect would be on

their sexuality.

 Our sexual fantasies are saturated with images

from advertising and the entertainment world.

 Media-driven standards of sexual

attractiveness, especially women, result in even
greater disadvantages for people whose bodies
deviate from the ideal.

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40
 性福療程
主題是講述殘疾人的性愛問題。

馬克 · 歐 · 布萊恩自小就患上了小兒麻痹，
他一直靠著一個人工呼吸器和所僱傭的保姆
的照顧而生活。大學畢業後到現在，
他已經是一個 36 歲的詩人兼記者。
由於自身身體的原因，他一直是一個處男。
這時他決定要結束自己的處男身份，
於是在情感治療師和牧師的監護下，
他聯繫到了一個專業的性治療師，
開始踏上了自己成為真正男人身份的重要一步。

In
the Netherlands, there is a policy that requests the
government paying the disabled a monthly subsidy to
cover sex service.

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 Another neglect on the disabled would be on
their emotional dimension.

 They are expected to be grateful for what help

they receive.

 This puts a burden on the patients to manage

their anger and emotions.

 Their depression is often viewed as their

individual problems rather than a normal
response to social pressures.

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5.3 Disability as a minority status
 People with disabilities constitute a minority
group because of their relative powerlessness
and their identifiability.

 These promote discrimination and

stigmatization.

 Some studies suggest that physically normal

people view those with impairments, such as
blindness, as inferior to members of ethnic
minority groups.

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 Disabling attitudes and environments create a
self-fulfilling prophecy that legitimates
differential treatments on the disabled.

 “Like racists, able-bodied people often

confuse the results of social oppression with
the effects of biology.”

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Self fulfilling prophency
 It refers to the socio-psychological
phenomenon of someone "predicting" or
expecting something.

 this “prediction” or expectation comes true

simply because one believes it will, and their
resulting behaviors align to fulfil those beliefs.

 This suggests peoples' beliefs influence their

actions.

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 The principle behind this phenomenon is
people create consequences regarding people
or events, based on their previous knowledge
toward that specific subject.

 self-fulfilling prophecy is applicable to

negative and positive outcomes.

 American sociologist William Isaac Thomas:

“If men define situations as real,
 they are real in their consequences.”

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5.4 Disability civil rights movements
 Many social workers in human services still
view people with disabilities as clients with
problems to be treated.

 The disability rights movement emphasizes

the involvement of citizens with disabilities in
shaping their own fate.

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 Social background: various forms of identity
politics attempted to forge a new identity and
sense of self (e.g. “Gay is proud,”, and “Black is
beautiful”).

 recapturing self and access

 One of the main contributions of the movement in

the 90s has been to heighten public awareness of
discrimination and chronic illness as socio-
political issues, not merely medical problems.

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Reading
Freund, Peter E. S. & McGuire, Meredith B.
1995. Health, illness and the social body: a
critical sociology (chapter 7). New Jersey:
Prentice Hall.

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