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The social construction of contested illness legitimacy: A

grounded theory analysis

Article  in  Qualitative Research in Psychology · January 2006

DOI: 10.1191/1478088706qrp061oa

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 Qualitative Research in Psychology 2006; 3: 233
251

The social construction of contested

illness legitimacy: a grounded
theory analysis
Debra A Swoboda
York College/City University of New York

This study examines the social influences that shape how individuals come
to believe they have a contested illness and the explanations of illness
legitimacy that result. Chronic fatigue syndrome, multiple chemical
sensitivities, and Gulf War syndrome have all been identified as
contested illnesses because their etiology, diagnosis, and prevalence are
controversial. Narratives from in-depth interviews with 22 individuals who
identified themselves as having these illnesses were analysed using a
grounded theory approach. Findings indicate that claiming medical
legitimacy for a contested illness involves a difficult and protracted
process in which sufferers develop social representations of the etiology,
diagnostic criteria, trajectory, and treatment of their illnesses. Study results
shed light on the role of sufferers in the social construction of the medical
and cultural legitimacy of emerging illnesses. Qualitative Research in
Psychology 2006; 3: 233
251

Key words: contested illness; emerging illnesses; grounded theory;

narratives; social influences; social representations

Introduction cess includes the development of case iden-

The social process by which new illnesses
are placed on the public health agenda is a
complex one. Historical case studies of how
new illnesses emerge suggest that the pro-
tification, public awareness of a collective
health problem, and scientific investigation
(Barry, 2004; Karlen, 1995; Packard et al .,
2004; Preda, 2005). Most emerging illnesses
begin as a set of identifiable symptoms

Correspondence: DA Swoboda, Department of Behavioral Sciences, York College/CUNY, 94-20 Guy R. Brewer
Boulevard, Jamaica, NY 11565, US.
Email: dswoboda@york.cuny.edu

# 2006 SAGE Publications 10.1191/1478088706qrp061oa

234 DA Swoboda
whose significance is not understood nor
appreciated. At some point, however, those
suffering from these symptoms, or their
doctors or medical researchers, often come
to see these conditions as illnesses with
organic causes. Thus, a unified body of
medical knowledge about a new illness
evolves over time. ‘A disease does not exist
as a social phenomenon until we agree that
it does’ (Rosenberg, 1989: 1). While some
contested illnesses gain legitimacy, others
never receive official biomedical recogni-
tion because they encounter overwhelming
opposition at one of the transformation
points for the emergence of a new illness.
Illnesses are socially constructed (Berger
and Luckmann, 1966; Brown, 1996).
From an epidemiological standpoint, an
emerging illness is more likely to be con-
sidered significant if the condition lends
itself to a clear case definition. Illness refers
to the subjective experience of a person
suffering from symptoms that are salient in
his or her cultural context. If no laboratory
test or reliable marker is available for diag-
nosis, as is often the case with new illnesses,
illness recognition is advanced if the clinical
signs are specific or if the illness is asso-
ciated with a particular social group. ‘The
emergence of a disease or illness is both an
epidemiological and a social process’ (Pack-
ard et al ., 2004: 3). From this perspective,
illnesses are empty of essential characteris-
tics independent of their formation and
representation in social interaction and dis-
course. For illness sufferers, there is much
at stake in regard to the development of an
illness classification system and public re-
cognition of their situation. The allocation of
research funds for treatment development,
the acceptance of the illness as an insurable
condition, and the initiation of a public
health prevention campaign, all depend on
wider public recognition of an illness.
The identification of a contested illness as
worthy of medical attention develops over
time, dependent on the social psychological
forces at work. Changes in recognizing and
affirming the existence of new illnesses
are best explained in terms of interactions
among sufferers, medical professionals, ad-
vocacy groups, investigators, and larger
institutional forces which shape the defini-
tion of illness.
Contested illnesses
A number of contested illnesses currently
exist due to their controversial status among
the medical community, advocacy groups,
and cultural institutions. Contested ill-
nesses can be described as having the
following characteristics: (1) their status as
a legitimate illness is highly controversial;
(2) their etiology is ambiguous; (3) their
existence has been linked to other diagnoses
and co-morbid conditions; (4) their treat-
ment regimens are unclear; and (5) their
legal, medical, and cultural classification is
disputed. Researchers have identified a
number of these conditions as illnesses
you have to fight to get or as illnesses with
a highly subjective component (Dumit,
2004; Morris, 1998; Showalter, 1998).
Chronic fatigue syndrome (CFS), multiple
chemical sensitivities (MCS), and Gulf War
syndrome (GWS) are currently contested
illnesses because of concerns about the
sensitivity and reliability of the criteria
used for their diagnosis and treatment. All
three illnesses lack the designation of a
medically agreed upon causal agent and
the case definitions that do exist have not
been derived empirically. As nosological
categories, all three illnesses share similar
symptoms, exhibit co-morbidity, and are
sometimes diagnosed in place of each other
 The social construction of contested illness legitimacy
(Donnay, 1997). Since identification of a
substantial number of cases of these three
illnesses has also occurred within the last
two decades, numerous agencies (ie, the
Center for Disease Control, the American
College of Occupational and Environ-
mental Medicine, the Department of Veter-
ans Affairs) have identified these illnesses
as worthy of further investigation. CFS,
MCS, and GWS are thus emerging illnesses
whose etiologies are uncertain and whose
overlapping diagnostic criteria are in flux.
In this context, an ongoing medical
debate rages as to the causal agents of CFS,
MCS, and GWS. Some researchers explain
CFS, for example, as having organic causes,
others see it as psychological in nature, and
still others see it as a combination of both
organic and psychological factors (Komaroff
and Buchwald, 1998; Manu, 1994; Ware,
1993). Scientists studying the causes of
MCS similarly offer conflicting explana-
tions, including psychological distress,
odor intolerance, conditioned response,
and a combination of psychological and
physiological effects (Black et al ., 1990;
Ducatman, 1998; Leznoff, 1997; Meggs
et al., 1996). Several different theories
have also been advanced to explain GWS.
Researchers have reported psychological
differences as having a prominent role in
symptom explanation, whereas other inves-
tigators have identified the syndrome as
associated with immune dysregulation, ad-
ministration of multiple vaccines, and ex-
posure to toxicological substances and
environmental factors (Hotopf et al., 2000;
Proctor et al ., 1998; Storzbach et al ., 2000;
Zhang et al ., 1999). Consequently, a large
and growing volume of literature catalogs
the physical symptoms which constitute
CFS, MCS, and GWS, but wide disagree-
ment exists as to whether these illnesses are
psychological or organic in nature. Sufferers
235
and medical practitioners are forced to
make sense of these competing accounts,
since no one explanation of any of these
illnesses is dominant.
Rationale for the study
The qualitative literature on the experience
of living with a chronic illness indicates
that the struggle has direction, meaning,
and is valued (Brody, 2003; Frank, 1995;
Kleinman, 1988). Serious illness disrupts
normality, creating phases of breakdown
and disintegration (Brown, 1996). Existing
support structures and activities are often
inadequate to manage the turmoil of change
and loss. While the narratives of individuals
with contested illnesses reflect these
themes, their stories are different from those
of other chronically ill individuals in a
significant way. Contested illness sufferers
struggle to explain the medical authenticity
of their illnesses (Abbey and Garfinkel,
1991; Cohn, 1999; Horton-Salway, 2001;
Hyden and Sachs, 1998; McCormick, 2000;
Moss-Morris and Petrie, 2000; Munson,
2000; Tucker, 2004). Given the disagreement
that exists as to the underlying cause of
these illnesses, questions and judgments
regarding illness origin and the validity of
complaints are often in the narrative fore-
front. The narratives of individuals with
chronic illnesses that are difficult to iden-
tify because of a lengthy process of differ-
ential diagnosis (eg, Multiple Sclerosis) are
similar to those of individuals with con-
tested illnesses (Driedger et al ., 2004).
Sufferers of contested illnesses are none-
theless more likely than other chronically
ill individuals to engage in stories of diag-
nostic negotiation, since their relationships
with many members of the health care
community are often adversarial in nature.
236 DA Swoboda
This is because the symptoms of indivi-
duals with contested illnesses are more
likely to be initially treated as moral or
psychological problems by medical practi-
tioners and others, rather than as indicators
of an organic illness (Malterud, 2000).
A number of researchers have investi-
gated how sufferers construct the meaning
of contested illnesses in the midst of con-
flicting cultural and medical explanations.
Some have done so by focusing on the
structural characteristics of contested ill-
ness stories, describing the kinds of knowl-
edge and values they encode (Abbey and
Garfinkel, 1991; Cohn, 1999; Hyden and
Sachs, 1998; McCormick, 2000; Munson,
2000). Other researchers have investigated
the rhetorical work that individuals with
contested illnesses perform within their
narratives (Horton-Salway, 2001; Moss-
Morris and Petrie, 2000; Tucker, 2004).
This body of work provides a valuable
contribution to the role of language in
knowledge construction of contested ill-
nesses by explicating how sufferers discur-
sively build an understanding of their
illnesses in the midst of medical contro-
versy.
This study seeks to add to the current
understanding of contested illness dis-
course by analysing the relationship be-
tween significant social influences in
sufferers’ lives and their representations of
illness legitimacy. While it is clear that
discourse about contested illnesses occurs
in many complex contexts, this study
focuses on sufferers’ critical experiences in
the pursuit of illness diagnosis and how
these modes of interaction and discourse
shape social representations of contested
illness. This work illustrates how knowl-
edge of contested illnesses is constructed
via sufferers’ interactions with medical
practitioners, their examinations of the
medical debate about contested illnesses,
and their contact with other sufferers.
Further, this study looks at commonalities
in sufferers’ experiences and representa-
tions across three contested illnesses

CFS, MCS and GWS. A comparison of the
similarity of experiences and representa-
tions of individuals with different contested
illnesses expands our knowledge of how
sufferers commonly deal with conflicting
explanations of their illnesses. Thus, this
study aims to add to the literature on
contested illnesses by showing how suf-
ferers’ social representations of their ill-
nesses develop and how they contribute to
the overall contested illness debate.
Specific questions shaping this inquiry
include the following: (1) How do sufferers
explain their interactions in the health care
system when they confront problems re-
garding illness authenticity? (2) What role
do interactions with medical professionals,
designated experts, and advocates play
in shaping sufferers’ understanding of a
contested illness? (3) How do sufferers see
themselves in comparison to others who
have identified themselves as having a
contested illness similar or different to their
own? (4) What explanations do sufferers
develop to explain the controversial nature
of their illness? To answer these questions, a
study was conducted to investigate the key
experiences and beliefs that shape how
individuals with contested illnesses come
to believe they have a legitimate illness.
Methodology
This research investigation was based on
three assumptions. First, reality or truth is
always emerging. Sufferers do not merely
respond to events, but also engage in
actions and create responses to the illness
 The social construction of contested illness legitimacy
experience. Second, individuals achieve a
sense of self through internal dialogue and
interaction with others (Gilligan, 1982).
Social representations of illness are con-
structed, transformed, and rebuilt in every-
day discussions, and can be found in
sufferers’ responses to practices of care
and treatment, medical and cultural expla-
nations of contested illnesses, and contact
with other sufferers. Social representations
can be empirically captured by analysing
narratives as well as by asking people for
their definitions of the issue under scrutiny
(Flick, 1995; Murray, 2002). Third, experi-
ences and interactions shape the way reality
is perceived and explained. A research
perspective was required that acknow-
ledged these premises.
Narratives were chosen as the means for
accessing the key experiences and beliefs
of individuals with different contested ill-
nesses because narratives provide a way
for social actors to convey where they
have been and where they are going in
illness from their own perspective.
Grounded theory was chosen as the method
for analysing narrative accounts because it
is consistent with the view that knowledge
is socially constructed (Glaser and Strauss,
1967). The symbolic interaction perspective
upon which grounded theory is based em-
bodies the belief that individuals engage in
social interactions to which they bring
their own meanings, definitions, and inter-
pretations (Glaser, 1992). Grounded theory
is designed to explain the developing
patterns, processes, and strategies that peo-
ple use to interpret and explain their
experiences.
Strauss’s later work explicates how
grounded theory can be used to examine
the transactional system
the conditional
matrix
that influences social psychologi-
cal processes or core variables. A transac-
237
tional system is made up of interactive and
inter-related levels of interactions and con-
ditions that shape or constrain phenomena
(Strauss and Corbin, 1994). One can identify
what these processes are and how they
influence outcomes. Consequently, the test
of grounded theory is not just in how well it
describes what is happening, but in how
well it explains the outcomes of these
processes that will shape future thought
and action. A grounded theory analysis
can therefore be used to understand the
social influences shaping contested illness
identity and their impact on sufferers’
explanations of illness legitimacy.
A grounded theory methodology was
selected for this study for two other reasons.
First, the application of grounded theory is
thought to be most relevant in situations in
which little is known about a phenomena.
Grounded theory has been used to analyse
other contested illnesses, such as repetitive
stress injury, attention deficit hyperactivity
disorder, and Asperger’s Syndrome (Arksey,
1998; Harborne et al ., 2004; Jones, 2001).
This study was designed to analyse the
ways individuals seeking diagnosis for
CFS, MCS, and GWS similarly negotiate
and explain their illnesses, a subject on
which information is lacking. A grounded
theory approach was thus identified as well
suited for investigating this terrain. Second,
the use of grounded theory methodology
adds legitimacy and rigor to qualitative
research. Grounded theory specifies ways
to evaluate the validity, reliability, and
credibility of data within the framework of
qualitative research. Raising the level of
analysis from the descriptive to the theore-
tical was an important goal of this study,
and grounded theory was selected because
it provides the rigorous tools to pursue this
objective.
238 DA Swoboda
Participants
The sample consisted of 22 individuals in
the New York City metropolitan area who
identified themselves as having CFS, MCS,
or GWS and were actively seeking treat-
ment for these illnesses. Participants were
obtained through convenience sampling via
advertisements for study volunteers placed
in various public locations (ie, college
campuses, libraries, internet discussion
sites) and local publications. Participants
included nine males and 13 females, ran-
ging in age from 21 to 62 years of age. While
the majority of the participants were Cau-
casian, the sample included three African-
American and two Latina individuals.
Procedure
In-depth structured interviews with partici-
pants were conducted. After participants
filled out a consent form and a demographic
information form, interviews began with
the simple statement, ‘Please tell me the
story of how you became ill’. The interview
protocol included open-ended and closed
questions that explored the chronology of
diagnosis and treatment, attributions re-
garding medical assistance, the utilization
of social support, social comparison factors,
and the meaning of illness. Medical docu-
mentation supplied by participants was
reviewed to supplement reported medical
histories.
Interviews were transcribed and the nar-
ratives produced were analysed using a
grounded theory approach. The goal of
data analysis was to identify sufferers’
social representations of contested illness
and the dominant social influences in their
illness experience shaping these representa-
tions. A coding scheme was developed to
analyse relationships among the data with
the use of open, axial, and selective coding.
Code names were assigned to discrete data,
and as codes recurred, indicators were
compared for similarities and differences.
Theoretical coding provides the means to
move beyond the empirical data (Glaser,
1978: 55). Hypotheses were generated di-
rectly from the coded data and then tested
and refined based upon further data that
emerged. By fracturing the data and then
conceptually grouping the data into codes, a
theory emerged to explain what was hap-
pening in the stories participants told.
In the first stage of open coding, the
researcher was concerned with the mean-
ings that participants gave to their experi-
ences. Transcripts were broken down into
12 coding categories that spanned all of the
participant data. Through the process of
constant comparison, it became clear that
specific experiences were conceptual indi-
cators of various categories. These cate-
gories were: confronting psychological
diagnosis; negotiating treatment; seeking
information; evaluating doctors; verifying
symptoms; sharing information; obtaining
social support; acknowledging multiple
symptoms; explaining illness trajectory;
framing medical tests; identifying treat-
ments; and coping with dangers. Axial
coding was then conducted, in which pat-
terns among the preliminary coding cate-
gories were analysed and refined. In this
phase of analysis, the researcher sought to
conceptualize the data more broadly. Four
categories emerged from this process: rejec-
tion; investigation; confirmation; and expla-
nation. The constant comparison of
categories resulted in the formation of hy-
potheses about the relationships among
categories. This fine tuning resulted in the
emergence of a core process that illumi-
nated the four categories. In the final stage
of selective coding, the core category of
illness legitimacy was identified as the
category to which all data was related and
interconnected. The core category is the one
 The social construction of contested illness legitimacy
that accounts for most of the variability in
behavior patterns (Glaser, 1978).
To establish the reliability of this coding
scheme, two research assistants coded a
subset of each narrative to establish inter-
rater reliability for the open coding cate-
gories. High reliability ratings were ob-
tained for the initial 12 categories (range /
0.72
0.96) and overall inter-rater reliability
among the investigator and research assis-
tants was 89%, using Cohen’s Kappa. Relia-
bility of the results was also evaluated by
providing participants with a brief, written
summary of findings and obtaining their
written and oral feedback.
Results
The findings indicate that a series of critical
interactions and conditions shape the re-
presentations that individuals use to ex-
plain that they have a legitimate but
contested illness. These social influences
propel sufferers to develop a working model
of the nature of their illnesses. Analysis of
the data provides an understanding of the
interplay between the social influences
shaping contested illness identity and the
representations of illness legitimacy that
individuals seeking diagnosis for CFS,
MCS, and GWS develop.
Social influences
The initial event that shapes sufferers’ ill-
ness identity is their reaction to being
labeled as having a psychological disorder
rather than being identified as having a
legitimate illness of the body. Participants
with all three contested illnesses had simi-
lar experiences of rejecting the psychologi-
cal explanations for their complaints
initially given to them by medical practi-
tioners. Participants reported that in their
initial encounters with medical practi-
239
tioners, they were diagnosed as having
depression (50%), anxiety disorders (22%),
stress-related complaints (19%), or somato-
form disorders (9%). Participants reported
that while they received more varied illness
explanations from practitioners as their
diagnostic quest continued, doctors in early
medical encounters treated their symptoms
as psychological in nature. They explain
these initial diagnoses as a problem of
medical practitioners’ reliance on psycho-
logical explanations for symptoms that do
not fit patterns of known illnesses. ‘Because
my problems didn’t fit any pattern, the
doctor thought I had to be nuts,’ said one
participant. Another reason many doctors
rely on psychological explanations, partici-
pants suggest, is because they lack know-
ledge of contested illnesses. A participant
explained, ‘Something had to be wrong with
me psychologically because at that time, no
one knew anything about this illness . . . but
just because the medical field couldn’t find
what was wrong with me doesn’t mean it
was all in my head.’
While individuals with contested ill-
nesses recognize that psychological pro-
blems often occur in tandem or as a
byproduct of their illnesses, they reject the
explanation that their illnesses are princi-
pally psychological in nature. Although
participants reported that they routinely
experienced depression, anxiety, or stress,
they asserted that these reactions ‘are not
the primary symptoms of the illness’. Ques-
tioning one’s state of mental health when
first seeking medical help appears to be a
common experience for many individuals
with contested illnesses:
My doctor thought the problem was psychologi-
cal for a while. Anyone would have to think this
from the outside at first. In the beginning, my
presenting problem did appear sort of psycholo-
gical because I had all this anxiety about my
symptoms. But the anxiety was because of the
240 DA Swoboda
physical symptoms I had, not the other way
around . . . You can’t imagine how it feels. It’s all
one big mess. The constant concern that you will
get sick leads to a sense of anxiety and the feeling
that you may be crazy.
The experience of being initially diag-
nosed with a psychological disorder and the
rejection of this explanation for one’s illness
thus appear to be common experiences
among individuals with the contested ill-
nesses CFS, MCS, and GWS.
Participants also found the treatments
initially prescribed by medical practitioners
for their complaints to be inadequate, an-
other factor in rejecting psychological ex-
planations for their illness. While two
participants in the study received no treat-
ment recommendations in early medical
encounters, all others were prescribed med-
ication and/or therapy as treatments for
their conditions. Participants who had
followed these initial treatment recommen-
dations uniformly reported that their con-
ditions worsened with use and terminated
treatment within 12 months of first use. As a
result, participants reported encountering
physicians who told them they were ‘being
unco-operative’ or should ‘give the medica-
tions more time to work’. These experiences
further confirmed participants’ concerns
that they had an illness that was difficult
to diagnose and treat.
Due to these negative initial medical
encounters, participants pursued other ex-
planations for their complaints, a second
critical experience shaping illness legiti-
macy. Participants investigated other expla-
nations for their illnesses via information
from illness-related mass market and scho-
larly books, internet websites, newspaper
and magazine articles, medical journals,
and conference proceedings. This informa-
tion introduced participants to the scientific
debate about the etiology, diagnostic cri-
teria, and prevalence of their contested
illnesses and propelled them to make sense
of the conflicting explanations of illness
presented. Common responses to this infor-
mation included acknowledging that ‘even
the experts disagree’, or understanding that
‘you have to search for real scientific evi-
dence because there is a lot of bad infor-
mation out there’. Participants became em-
powered by knowledge of these scientific
disputes. A number of participants used
information they acquired supporting an
organic explanation of their illnesses in an
attempt to educate and persuade their doc-
tors that their illnesses were legitimate.
An individual seeking diagnosis for CFS
describes how she used the medical infor-
mation she collected in medical encounters:
I kept going to doctors and they couldn’t help
me, so I started doing research and I got referrals
to some experts on environmental illnesses. I
went to a number of specialists. One doctor took
my medical history and he did do lots of tests,
but I realized I knew more about some of this
stuff than he did. I had done my homework. I
would have my list of things I wanted and would
say, ‘‘What about this or what about that?’’ Some
of the doctors would go along with me, but only
to a certain point. This really bothered me
because I thought, ‘‘Didn’t they want to know
what research had been done?’’ I wanted them to
treat me with the best information possible, not
resent me for knowing something that they may
not have known.
Employing their knowledge of the scien-
tific debate concerning contested illnesses,
participants pursued several medical prac-
titioners in their quest to be properly diag-
nosed. Convinced that they were suffering
from something unusual and difficult to
diagnose, most participants did eventually
make contact with sympathetic practi-
tioners who agreed they had a contested
illness. Searching for a physician who
would confer what they believed to be a
proper label for their illness was a common
experience for participants. An individual
 The social construction of contested illness legitimacy
seeking diagnosis for MCS describes this
protracted experience:
I knew that if I found the right doctor, he would
find that I had the illness. Most doctors I saw
said my illness didn’t exist. I wanted someone to
help me figure out what was going on with me.
A few other doctors I contacted said they
believed that the illness existed but that there
was no way to accurately determine that I had it.
The problem was finding a physician to properly
diagnose my condition.
Thus, exposure to the scientific debate
about the nature of their contested illnesses
empowered sufferers to seek a physician
who would diagnose their condition as an
organic illness. As a result, participants
came to believe that they were more know-
ledgeable than most medical practitioners
about how to identify their illnesses.
Participants blame the inability of the
majority of physicians to properly assist
them on their failure to adequately listen
to patients, to become familiar with the
scientific literature, and to consider new
ideas or approaches. Participants state that
medical practitioners ‘don’t listen to the
patient’s real concerns’, ‘don’t read the
medical literature’, ‘think in black and
white’, or ‘don’t think about how symptoms
interact’. The major criticism that partici-
pants have of medical practitioners, none-
theless, is that they are not open to new
ideas. One man seeking diagnosis for GWS
describes the problem in the following
manner:
My experience has been that most doctors reach
for a diagnosis and insist they are right. Doctors
find it extremely difficult to say, ‘‘I don’t know’’.
From the get-go, doctors are taught to be author-
itative, to be decisive. You are weak of character
as a doctor if you say, ‘‘I don’t know’’. Most
doctors work from a conventional training meth-
od. They are trained to think that there are the
facts and facts are what you follow. But the
sophisticated medical thinkers are able to cir-
cumvent their training and say, ‘‘I don’t know
241
anything about this, let me check it out.’’ The
problem is that the conventional medical system
produces a lot of people who are unable to ask
the right questions and seek help from others if
they don’t know the answer.
In the eyes of individuals with contested
illnesses, many medical practitioners are
unable to evaluate a contested illness be-
cause they engage in practices that limit
their understanding of the patient and their
symptoms. Rather than discrediting the
ability of conventional medicine to diag-
nose and treat contested illnesses, partici-
pants view themselves as victims of an
entrenched medical discourse. As a result,
participants believe that finding a practi-
tioner who can ask the right questions,
remain open-mined, and utilize available
scientific information is essential to being
properly diagnosed with a contested illness.
Dissatisfying experiences with multiple
physicians and exposure to conflicting
explanations of their illnesses leads indivi-
duals with contested illnesses to seek sup-
port in other social venues, a third critical
experience shaping sufferers’ search for ill-
ness legitimacy. Individuals seek affirma-
tion of their illnesses in what Goldstein
(2004: 125) calls ‘intentional communities
of suffering’. Rejecting the diagnoses and
treatments prescribed by most medical prac-
titioners, participants investigate the nature
of their illnesses in support groups, internet
chat boards and list serves. Electronic for-
ums are especially effective in increasing
sufferers’ knowledge of contested illnesses
and in aiding the development of what
McLaughlin (1996) terms ‘vernacular health
theory’, knowledge about illness grounded
in sufferers’ shared experience, not the
language spoken by medical elites. Partici-
pation in these self-help and advocacy
groups helps participants to make sense of
medical confusion they encounter regarding
their conditions.
242 DA Swoboda
Participant narratives indicate that parti-
cipation in intentional communities pro-
vides three means for affirming that one
has a contested illness. First, intentional
communities provide a forum for sufferers
to apply a designated label to their illness,
thus ruling out other explanations for their
condition. Participation in intentional com-
munities allows participants to think of
their contested illness as a particular collec-
tion of symptoms
or syndrome, even if the
cause of the illness remains unclear. Inter-
action with other sufferers allows partici-
pants to identify symptoms and experiences
they have in common and thus to think of
themselves as having a shared illness iden-
tity. In this process, participants become
more knowledgeable of the labels given to
various contested illnesses (ie, CSF, MCS,
GWS) and begin to apply these illness labels
to their conditions. As one participant said,
‘The information I obtained helped me to
know what my illness was and what it
wasn’t. . . Knowing what you have gives
you a name for it’. One man seeking diag-
nosis for GWS describes how his participa-
tion in an electronic forum facilitated this
syndrome-identification process:
The more I participated, the more things became
clear. I saw that lots of individuals were describ-
ing similar symptoms and timelines concerning
how they got sick. When people told their
stories, they complained about the same list of
symptoms. I saw how I had experienced the same
things. I realized the symptoms I had fit a
pattern. . . This was a syndrome, not just a
random bunch of symptoms in a few people.
This realization really played a role in my
understanding of the illness. If we all had the
same symptoms and experiences, then we must
have the same illness.
Discussion and interaction with other
sufferers also provides a forum for making
sense of conflicting medical explanations of
contested illnesses. Participants report that
their interactions with other sufferers pro-
vide opportunities to debate the merit of
scientific studies and critique reports sup-
porting psychological explanations of their
illnesses. Thus, participation in intentional
communities provides a type of unifying
response to conflicting explanations of con-
tested illnesses.
A second way that intentional commu-
nities facilitate contested illness affirmation
is that they allow individuals with con-
tested illnesses to identify potential treat-
ments for their illnesses, and to share this
information with others. In the absence of
widely used treatments prescribed by most
doctors or reported in the scientific litera-
ture, participants report experimenting with
a range of conventional and complimentary
treatments for their symptoms, although
with limited or provisional success. Alter-
native medical practices used by partici-
pants include dietary regimes, physical and
manipulative therapies, religious and meta-
physical practices, and New Age and self-
improvement philosophies. Participant nar-
ratives indicate that trying many different
treatments in the search for improved
health is a common experience, as the
following statement illustrates:
There was no medication to help me. I had tried
the different medications that had been pre-
scribed for me and they all made my problems
worse. So I tried other treatments. I tried acu-
puncture. I tried massage. I tried physical ther-
apy. I tried some herbals, but it was a challenge
because some of these things made me worse . . .
You have to try different treatments because you
don’t know what will work for you. You have to
try things and if they don’t work, you go on to
another treatment. The more you can fine-tune
what helps you, the more you can understand
how this illness works.
Participants recognize that the benefits of
many of the treatments they employ entail
risks or that their benefits are unsubstan-
tiated. Nonetheless, they embrace trying
‘whatever works’ in order to improve their
 The social construction of contested illness legitimacy
health. Participants report that a substantial
amount of time spent participating in these
intentional communities involves learning
about treatments so that they can try these
treatments for themselves.
A third way that intentional communities
facilitate contested illness affirmation is
that they provide opportunities for partici-
pants to interact with specialists and desig-
nated experts and obtain referrals for
medical assistance. For many participants,
participation in these venues gives them
their first contact with a medical profes-
sional who views their condition as an
organic illness. Some individuals obtain
information about designated experts
through participation in electronic forums,
where forum contributors identify experts
to others based on their reading of the
medical literature and newsworthy reports.
Some participants reported acting on this
information by affiliating themselves with
certain practitioners or researchers in sup-
port of a particular treatment approach or
research purpose. Support groups provide
another medium for obtaining information
and assistance. Support group members
share information about how to document
the authenticity of one’s illness to obtain
employment, educational, and financial
benefits. They also provide interaction
with sympathetic practitioners and self-
designated experts. The statement of one
participant illustrates this experience:
One of the good things about participating in this
support group was that they would have practi-
tioners come in and speak to us
rheumatolo-
gists, neurologists, dentists. Through this
support group, I found the doctor that I work
with to this day. He is not a miracle worker, but
he knows this is a real illness and treats you with
this in mind.
Thus, interaction in intentional commu-
nities provides sufferers with access to
243
experts and information for medical assis-
tance.
Interaction in these social support venues
provides several benefits to sufferers, in-
cluding helping them to make sense of the
scientific debate about contested illnesses
and to affirm the organic nature of their
illnesses. Additionally, interaction provides
a means to generate a vernacular health
theory of contested illnesses among fellow
sufferers, a type of practical epistemology
for viewing their illnesses. Participation in
intentional communities also facilitates
syndrome identification and illness label-
ing, knowledge of various treatment possi-
bilities, and interaction with designated
experts. These findings support the conclu-
sions of other studies on the impact of self-
help networks on contested illness identity
(Barker, 2002; Rappaport, 1993).
Illness legitimacy
As a result of this series of critical experi-
ences, individuals with contested illnesses
develop a working model of the etiology,
prevalence, and treatment of their contested
illnesses. Study participants with all three
contested illnesses develop representations
explaining the difficulties associated with
accurate diagnosis as well as the obstacles
inherent in proper illness recognition and
acceptance. Specific social influences are
significant in this process. Participants’
interactions with medical practitioners,
their sense-making of the scientific debate
about contested illnesses, and their experi-
ences of illness affirmation in intentional
communities lead them to develop an ex-
planatory model that addresses the etiolo-
gical questions and treatment quandaries
associated with their contested illness.
Participants with all three contested ill-
nesses use a similar characterization of the
features of their contested illnesses that
help explain why they are difficult to
244 DA Swoboda
diagnose and treat. First, participants with
all three illnesses believe that their illness
has a wide range of symptoms
including
physical symptoms, cognitive difficulties,
fatigue, and respiratory problems. Partici-
pants believe that the list of symptoms
associated with their contested illness is
broader than that in most other chronic
illnesses, and that this broad symptom list
invites suspicion about the legitimacy of
their illness as well as misdiagnosis. As a
result, sufferers want to see the develop-
ment of a recognized protocol that enumer-
ates these multiple symptoms and how they
occur in tandem. Increasing the perception
that a contested illness is legitimate requires
a clear protocol. As one individual ex-
plained, ‘Without a definitive list of the
symptoms of this illness and why symp-
toms tend to co-occur, physicians will
always be confused about how to make a
diagnosis. . . You need criteria to define all
the various symptoms.’
Second, participants with all three con-
tested illnesses characterize the course of
their illness as one that varies widely among
sufferers in nature and severity. Variation in
symptomatology, trajectory, and severity is
explained as dependent on an individual’s
level of impact or exposure, as well as on
pre-disposition factors. This wide illness
spectrum is seen by participants as a key
reason why it is difficult to identify a clear-
cut explanation of illness etiology. One
participant explained this problem:
The longer you have been sick and the greater the
combination of things that made you sick in the
first place makes a huge difference in under-
standing differences in prognosis among indivi-
duals. The greater the impact, the harder it is for
some people to recover. But everyone has a
different body, too, with different weaknesses
and propensities. Three different people could
have three different reactions to the same triggers
or events. This is why a spectrum of severity
occurs.
Third, participants point to the lack of
accepted tests and/or standardized mea-
sures that clearly differentiate their illness
from other conditions
a reason why,
participants claim, prevalence of their ill-
ness cannot be clearly determined. A
woman seeking diagnosis for CFS put it
this way:
The blood tests that all these doctors give you are
good for some things. They identify what you
don’t have. There were lots of times when the
tests came back negative and I was kind of upset
that they came back negative. I just wanted
something to be wrong with me so I could treat
it and it would go away. But the tests they use are
insufficient for identifying what is really wrong
with you. Doctors are unable, for the most part, to
identify the appropriate markers for this illness.
The tests are not appropriate for identifying the
type of illness that I have.
In the absence of widely accepted diag-
nostic tools, participants emphasize the
authenticity of their experiential knowledge
of their contested illness in opposition to
the accuracy of results obtained from exist-
ing tests and other conventional methods of
illness identification.
Finally, participants with all three con-
tested illnesses characterize their illness as
reflective of human vulnerability to dangers
increasingly encountered in modern life.
They see their illnesses as signaling an
emerging epidemic of harmful reactions to
various viruses, pollutants, and/or chemical
toxins. A woman seeking diagnosis for MCS
describes the failure of most people to
recognize the increasing incidence of envir-
onmental illnesses and its impact on the
acceptance of her illness:
It is very clear to me that more and more people
are getting ill . . . More and more people are
getting cancer and other immune disorders. It’s
not just that diagnosis has improved. This is a
shift in our health as a species. How could
anyone see it otherwise? I no longer have a blind
trust that things out there are safe. Most people
 The social construction of contested illness legitimacy
are naı̈ve about this. I don’t think anybody is out
to get me and I don’t think anybody is intention-
ally out to do me bodily harm. I am simply
collateral damage. All of society is telling us that
my illness shouldn’t happen. People want to be
told they are safe. But if you believe this, you are
not going to believe me.
Individuals with these contested illnesses
thus see themselves as vulnerable to many
common risks experienced in modern life.
As a result, the explanatory model they
embrace posits contested illnesses as the
unfolding of environmental traumas into
the body and as a telltale response to a
dangerous world.
Characterizing their illnesses in this fash-
ion leads sufferers to seek out and identify
practices and treatments that aid them in
managing their illnesses. In the absence of
established treatments for their illnesses,
participants experiment with a wide range
of conventional and nonconventional treat-
ments. Nonetheless, all participants iden-
tify health surveillance
limiting one’s
activities or exposure to environmental
and bodily threats
as the one treatment
essential to illness management. This
level of control produces a heavy psycholo-
gical toll:
The worst part of the experience is having to
always control my environment. If I can do that, I
can control my exposures, and then a lot of my
health problems are resolved. I wish I had more
freedom, though. I wish I was able to do what I
wanted to do. When I do certain things, I am
taking a risk and hoping that nothing happens.
It’s very demoralizing. It restricts me. The threat
is real. Maintaining my health is entirely based
on my own determination, how I control my
exposure and based on my own knowledge of
my body.
For individuals with contested illnesses,
learning to control one’s environment based
on individual knowledge of what factors
negatively affect one’s health is essential to
illness management.
245
In summary, the findings of the study
indicate that the search for medical legiti-
macy for a contested illness is a difficult
and protracted experience. Obtaining legiti-
macy for a contested illness requires that
individuals overcome the label of a psy-
chiatric illness and reject standard treat-
ments, make sense of the scientific debate
about contested illnesses, and affirm the
legitimacy of their illnesses in intentional
communities. As a result of these critical
incidents and experiences, individuals with
contested illnesses develop an explanation
of the etiology, diagnostic criteria, trajec-
tory, and treatment of their illnesses. Suf-
ferers develop a working model of contested
illness legitimacy to explain the difficulties
associated with diagnosing and treating
their conditions.
Discussion
The findings of this study indicate that
sufferers play a significant role in develop-
ing a case definition and social consensus
for further scientific investigation of their
contested illnesses. Based on a series of
critical events and social interactions, suf-
ferers generate explanations of the etiology,
diagnosis, trajectory, and treatment of their
contested illnesses. The explanations ex-
pressed are more than a set of illness values
and knowledge or a linguistic effort to
manage blame and accountability for ill-
ness. In the course of significant events and
interactions, sufferers generate a model that
explains the nature of contested illnesses,
why people get them, and what their prog-
nosis is. This working model helps sufferers
deal with conflicting medical and cultural
representations of their illnesses by explain-
ing why contested illnesses are so difficult
to diagnose and treat.
246 DA Swoboda
Social representations
The concept of social representations has
been used to explain why people develop
explanatory models of their experiences
and perceptions (Farr and Markova, 1995;
Herzlich, 1973; Moscovici, 1984). Social
representations theory provides the means
to understand how knowledge is socially
constructed. Examining sufferers’ model of
illness legitimacy from a social representa-
tions approach helps to explain why indi-
viduals with CFS, MCS and GWS socially
construct their illness experiences the way
they do.
A frequently cited definition of social
representation is from Moscovici (1973):
xiii) in which he states that a social repre-
sentation is:
a system of values, ideas and practices with a
twofold function; first to establish an order
which will enable individuals to orient them-
selves in their material and social world and to
master it; and secondly to enable communication
to take place among the members of a community
by providing them with a code for social ex-
change and a code for naming and classifying
unambiguously the various aspects of their
world and their individual and group history.
All social representations thus have a
cognitive component, in that individuals
and groups have an active role in the
appropriation and restructuring of reality,
and a social component, since social repre-
sentations are collectively generated
through social interaction to elaborate a
reality that is common to a social group.
Social representations emerge as the pro-
duct of values, ideas, and practices as
people make sense of their physical and
social environment. They can also be under-
stood as systems which produce such va-
lues, ideas, and practices. They constitute
an intermediate layer of knowledge between
private and public life and facilitate the
passage of new and reconstructed ideas
between the two. Social representations
essentially provide a sense-giving system,
a way for individuals and groups to make
sense of new or conflicting information and
experiences. Thus, social representations
theory provides a means to examine socially
shared beliefs in their natural environment.
According to Moscovici (1984), there are
two essential transformation processes in
the genesis of social representations: objec-
tification and anchoring. Objectification
and anchoring are not automatic processes,
but instead are products of social interac-
tion and communication. Objectification is
the process in which information is inter-
preted and categorized, resulting in the
status of fact for an individual or group.
One reason people create social representa-
tions, therefore, is in order to transform new
or conflicting information into something
concrete, perceptible, and factual. Social
representations are also created through
anchoring, the process in which new or
conflicting information is placed into a
network of significance shaped by a group
or culture’s social values. Anchoring is
prescriptive in nature, since supporting
evidence as well as conflicting information
is anchored and re-presented in a way that
is compatible with a group’s outlook. People
also create representations, therefore, to
reflect group frames of reference for estab-
lishing opinions and perspectives about
persons and situations. Objectification and
anchoring result in the production of social
representations which advance particular
claims and justifications on a social level,
thus allowing for more convincing ways
of justifying a stance in a matter of con-
troversy.
While some analysts have portrayed so-
cial representations theory as being in
conflict with approaches based on the study
of discourse and rhetoric, others have
 The social construction of contested illness legitimacy
attempted to reconcile social representa-
tions to the study of discourse, emphasizing
the argumentative aspects of anchoring and
objectification (Billig, 1993; Edwards,
1997). Moscovici (1998) has reiterated the
importance of language in the process of
representation and argued that discourse
studies and social representations theory
complement each other. Whereas a discur-
sive approach analyses the ways in which
competing versions of reality are developed
and serve particular ideological functions,
social representations theory focuses on the
underlying psychological mechanisms em-
ployed in this process. A social representa-
tions approach presupposes the importance
of looking at how individuals function
within the social worlds they constitute
and the dynamic impact of these social
influences on their representations. Such
an approach does not deny the importance
of looking for pervasive patterns of dis-
course across different social contexts.
Rather, it focuses on social interactions per
se and moments of articulation (Wetherell,
1999: 402). The analysis of sufferers’ under-
standing of contested illnesses presented
here adopts the assumptions of this recon-
ciliatory argument.
From this perspective, anchoring and
objectification are products of discursive
interaction and communication, the psy-
chological mechanisms by which sufferers
of contested illnesses advance their claims
of illness legitimacy. Sufferers seeking ill-
ness legitimacy for CFS, MCS, and GWS
employ objectification and anchoring to
advance their individual and group inter-
ests. These representations serve as a frame
of reference for sufferers to make sense of
confusing situations and information and to
establish a point of view about the persons
and situations they encounter.
247
Objectification is used to create social
representations of illness in specific ways.
Sufferers who believe they are misdiag-
nosed, for example, classify their initial
experiences with medical practitioners as
reflecting physicians’ inability to ade-
quately consider new ideas or approaches.
Rather than accepting the label of a psycho-
logical disorder, sufferers view themselves
as victims of an entrenched medical dis-
course that makes it difficult for many
practitioners to recognize new patterns of
illness. Experiences of misdiagnosis and
medical incredulity are thus objectified as
all-too-common occurrences in the lives of
individuals with contested illnesses. Suf-
ferers use objectification to transform the
protracted and difficult experience of ob-
taining proper diagnosis and treatment into
a comprehensible experience. As a result,
sufferers come to believe that they are more
knowledgeable about their conditions than
most medical practitioners. Sufferers also
use objectification to explain the conflicting
medical and cultural explanations they en-
counter about their illnesses. When exposed
to divergent opinions about the etiology and
prevalence of their contested illnesses, suf-
ferers interpret this information by ac-
knowledging that ‘experts disagree’ and
that ‘scientific understanding is still lack-
ing’. Genuine understanding of the causa-
tion and treatment of their emerging
illnesses is viewed as being in flux. Suf-
ferers’ use of objectification thus produces
social representations that transform infor-
mation and experiences questioning the
authenticity of their illnesses into explain-
able phenomena.
Sufferers also use anchoring to create
social representations, and these represen-
tations are used to advance group values
and interests. Individuals employ anchor-
ing, for example, when they affirm their
248 DA Swoboda
symptoms through interaction with others
in intentional communities of suffering, or
when they appropriate a contested illness
label to describe their condition. The social
representations that result from this process
reflect a collective perspective that affirms
the authenticity of their contested illness.
Sufferers also use anchoring when they
assert that most of the current tests used
for illness diagnosis are not applicable for
their conditions. While they acknowledge
that standard tests and diagnostic protocols
advance illness legitimacy, sufferers argue
that the broad symptomatology and trajec-
tory of their contested illnesses make the
establishment of such diagnostic tools diffi-
cult. Accordingly, sufferer-generated repre-
sentations of the criteria for contested
illness diagnosis and treatment become
important components of sufferers’ indivi-
dual and group subjectivity, facilitating a
stronger collective illness identity. These
prescriptive representations serve as a
working case definition of CFS, MCS, and
GWS, furthering increased diagnosis of in-
dividuals who report they have these con-
ditions. These representations of illness
authenticity also provide the social impetus
for further scientific investigation of con-
tested illnesses.
Social representations theory posits that
new social representations are most likely
to develop in times of crisis and upheaval,
when a group or its image is undergoing
change. This is because people in times of
crisis are more willing to talk, conflicting
images are more prevalent, and individuals
are more motivated to understand unfami-
liar or confusing information. Moscovici
(2000) argues that paradigm-changing social
representations are most likely to occur
when there is a rift between science and
everyday knowledge, and that this milieu
produces tensions that result in new
conceptions and their popularization in
everyday speech and collective awareness.
People who elaborate social representations
in this context are akin to amateur scholars
who advance their ideas in groups and
organizations of other amateur scholars.
The findings of this study indicate that
sufferers see themselves as straddling the
boundary between current medical knowl-
edge and sufferers’ situated knowledge of
contested illnesses. As individuals interact
with each other in intentional communities
of suffering, their representations acquire
collective weight in everyday speech and
awareness, and they and others increasingly
view their illnesses as a collective health
problem. In this respect, the representations
of illness legitimacy that sufferers generate
are a form of amateur scholarship about the
nature of contested illnesses. The vernacu-
lar health theory of contested illness that
sufferers advance provides the groundwork
for further acceptance and investigation of
CFS, MCS, and GWS.
This study sheds light on the social
influences shaping the diagnosis and treat-
ment of three controversial illnesses
CFS,
MCS, and GWS. The findings of this in-
vestigation suggest that the social construc-
tion of a contested illness evolves over time,
dependent on the social influences that
shape its emergence and constituted by a
set of social representations describing its
structure and content. The findings of this
study suggest that sufferers of contested
illnesses play a significant role in facilitat-
ing the paradigm-changing social represen-
tations that shape the legitimization
process. Sufferers’ social representations
produce a working model of illness legiti-
macy that impacts the quality of life of
patients, the capacity of medical profes-
sionals to provide assistance, and the ways
in which advocacy groups and institutions
 The social construction of contested illness legitimacy
respond. This study expands knowledge of
the social construction of illness by exam-
ining how representations of contested ill-
nesses are generated in the lives of sufferers
as they make sense of their interactions with
practitioners, conflicting explanations of
contested illnesses, and other sufferers.
Acknowledgements
This work was supported (in part) by a
grant from The City University of New York
PSC-CUNY Research Award Program.
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