NORMA C. WARE
TOWARD A MODEL OF SOCIAL COURSE IN CHRONIC ILLNESS:
THE EXAMPLE OF CHRONIC FATIGUE SYNDROME
ABSTRACT. Retrospective, narrative accounts of illness experience in chronic fatigue
syndrome provide the empirical basis for a preliminary conceptual model of social course
in chronic illness. Qualities of distress interact with culturally specific expectations for
social life and personal conduct to trigger microsocial processes of marginalization: role
constriction, delegitimation, impoverishment, and social isolation. Marginalizing processes
are opposed by acts of resistance initiated by ill individuals and directed toward integration in social worlds. Social distance from the perceived centers of CFS sufferers’ interpersonal worlds expands and contracts with the changing predominance of marginalizing
and resisting influences over time. Social course thus consists of successive, bi-directional
movements along a ‘continuum of marginality’ by persons living lives with chronic illness.
INTRODUCTION
Well over a decade ago now, Kleinman introduced the term ‘sociosomatic’
as a way of conveying the idea that bodily distress has social roots.1 It is a
term that highlights particular qualities of relationship between body and
society – a dialectical quality; a symbolic quality in which types of distress
‘stand for’ their social origins; a quality of mediation, where the impact of
large-scale social forces is filtered at one level through ‘local worlds’, and
at another through physiological processes, on the way to being realized
as bodily discomfort (Kleinman 1982, 1986, 1995).
Sociosomatic relations are a way of explaining symptoms. The explanation turns on a process of somatization in which social problems –
most often, for Kleinman, the upheaval emanating from the Cultural
Revolution in China – become embodied as physical complaints.2 Sometimes such complaints are presented as indirect protests against oppressive
social conditions and/or relations of authority as part of a sociosomatic
interpretation (Kleinman 1992; Kleinman and Kleinman 1994).3
The argument that symptoms develop in sociosomatic relations has
given rise to an analogous claim: that illness also has a social course.
Attempts at defining social course have become less narrowly symptomfocused over time. Initial efforts were explicitly sociosomatic. Ware and
Culture, Medicine and Psychiatry 23: 303–331, 1999.
© 1999 Kluwer Academic Publishers. Printed in the Netherlands.
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Kleinman (1992) offered a two-part definition consisting of: (1) a waxing
and waning in the severity of symptomatology in response to changes in
the character of the social environment, and (2) a reciprocal interaction in
which environments shape symptoms, which in turn then shape environments, over time (see also Kleinman 1992: 173, 180). More recently, Hicks
(Hicks, Kleinman and Yang, forthcoming; Hicks and Lam, forthcoming)
has characterized course in terms of illness phases – symptom identification, help-seeking, treatment, outcome – each of which is understood to be
influenced by social processes. Taking an even broader view, Kleinman et
al. (1995) define illness experience as social experience – shared, ‘intersubjective’ – and social course as the way the social experience of illness
develops.
This paper builds upon previous definitions and upon new empirical
research to offer a preliminary conceptual model of social course in
chronic illness.
Such a project can be approached in different ways. Following earlier,
symptom-focused formulations, we might examine social course by identifying social and cultural influences on bodily distress and tracing these
relationships longitudinally. The unit of analysis defined here, however,
is not change and continuity in symptoms, but rather the day-by-day
experience of a life lived with chronic illness.
Thus the model depicts the social construction of life experiences of
chronic illness over time. It lays out a set of relationships among aspects
of illness, cultural patterns and the standards for behavior they create, and
microsocial processes observed to be thematic in the lives of chronically
ill persons. Social processes are described in terms of categories borrowed
from previous research in medical anthropology and other social sciences,
but re-worked in the course of the analysis. A new conceptualization of
social course is offered based on the results, together with suggestions
for different ways of thinking about illness experience and the relation of
symptoms to society.
The model is derived from retrospective, narrative accounts provided
by individuals suffering from chronic fatigue syndrome (CFS). The claim
is thus only that it represents with reasonable accuracy the social course of
this chronic condition. Some of the social processes, patterns of symptom
change, and other qualities of distress described may characterize other
illnesses as well. Whether they do, and how they do, are questions for
systematic investigation in future research. To provide a starting point for
such research, the model is framed in general, rather than specific, terms.
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Qualities of Distress × Cultural Expectations = Processes of Marginalization - - - > Resistance Strategies
<-------------------------->
Continuum of Marginality
In CFS:
Relevant to CFS:
In CFS:
In CFS:
Lack of Stamina
Constant Activity
Feeling Slowed Down
Unpredictable Changes
in Symptoms
‘Speed’
‘Scheduledness’
Role Constriction Preserving the Lifeworld
(cutting corners,‘passing’)
Delegitimation
Impoverishment Re-Making the Lifeworld
(‘downshifting’)
Social Isolation
Figure 1. Social course of chronic illness: A preliminary conceptual model based on
illness experience in chronic fatigue syndrome.
OVERVIEW OF SOCIAL COURSE OF ILLNESS IN CHRONIC
FATIGUE SYNDROME
The meaning, patterning, and implications of fatigue in CFS make it difficult, if not impossible, for persons with this illness to conform to certain
culturally prescribed expectations for behavior. Where long days crammed
with activity are the norm, CFS sufferers lack stamina. They are slowing
down as the world around them speeds up. Though many of us live our
lives by our calendars, persons with CFS can neither commit to nor follow
a schedule, since they can never predict when their fatigue and other
symptoms are likely to intensify or recede.
Incompatibilities between qualities of distress in chronic fatigue
syndrome and culturally specific standards for social life – constant
activity, speed, ‘scheduledness’ – trigger social processes of marginalization. The combined effect is to push persons with CFS toward the periphery
of their everyday social worlds. The response of many of these individuals
is to ‘push back’ – to resist marginalization by devising tactics designed
either to preserve existing social positions or re-fashion them in ways that
foster social integration. In both cases, the disruptive effects of illness are
minimized.
Social course thus takes shape as changing positions along a
‘continuum of marginality.’ The discussion to follow lays out in detail
the material that pointed the way to, and now illustrates, this conceptual
model. A graphic representation is presented in Figure 1.
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RESEARCH AND STUDY SAMPLE
Materials presented below are drawn principally from the first wave of data
in a longitudinal study of illness course in chronic fatigue syndrome. Data
collection for the study consisted of four contacts per year for each participating subject over a three-year follow-up period. Each year participants:
(1) took part in a face-to-face, semi-structured research interview, most
often in their homes; (2) completed a set of mailed questionnaires three
months later; (3) gave a ‘follow-along’ telephone interview three months
after that; and (4) completed the same set of questionnaires at nine months.
Eighty individuals meeting CDC case criteria for chronic fatigue
syndrome (Holmes, Kaplan, Gantz et al. 1988) and residing in New
England were invited to participate in the study.4 Of these, 10 (12.5%)
could not be contacted or declined to participate. Four persons (5%)
reported that they had recovered. The study sample therefore consists of
66 persons with CFS.
Eighty percent (N = 53) of the group are women; 94% are Caucasian.5
At enrollment, from late 1993 to early 1994, they ranged in age from 27 to
72 years. Mean age was 43. Duration of illness at enrollment ranged from
2 1/2 to 36 years. Seventy-five percent of the sample had been ill for more
than five years when data collection began.
CHRONIC FATIGUE SYNDROME
Chronic fatigue syndrome (CFS) is a debilitating condition characterized
by persistent exhaustion and an array of associated complaints, prominently including sleep disturbances, cognitive problems (e.g., confusion,
memory difficulties), joint and muscle pain, headache, sore throat, depression, fever, and nightsweats (Komaroff and Buchwald 1991). It has been
variously interpreted as new and ‘revived’ (Abbey and Garfinkel 1991;
Wessely 1990; White 1989), clinically heterogeneous (Swartz 1988) and
homogeneous (White et al. 1995), a form of somatized depression (Lane,
Manu and Matthews 1991; Manu, Lane and Matthews 1988), a persistent
infection of disputed origin (Cater 1995; DeFreitas et al. 1991; Straus et
al. 1985; Yousef et al. 1988), and the product of a dysfunctional immune
system (Barker, Fujimura, Fadem et al. 1994; Buchwald, Cheney, Peterson
et al. 1992; Klimas, Salvato, Morgan and Fletcher 1990; Lloyd, Wakefield, Boughton and Dwyer 1989). After years of biomedical research on
etiology, its cause remains uncertain. What it should be called is a matter of
vigorous dispute.6 Epidemiologic and ‘outcome’ studies produce widely
divergent results (Bates, Schmitt, Buchwald et al. 1993; Bonner, Ron,
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307
Chalder et al. 1994; Buchwald, Umali, Umali et al. 1995; Clark, Katon,
Russo et al. 1995; Gunn, Connell and Randall 1993; Price, North, Wessely
and Fraser 1992; Vercoulen, Swanink, Fennis et al. 1996; Wilson et al.
1994). There is no cure or standard treatment.
Fatigue-centered syndromes have surfaced periodically in U.S. history.
Neurasthenia was highly prevalent in the late nineteenth century, but disappeared as psychiatric explanations gained ground and the ‘legitimizing
function’ (Sicherman 1977) of the diagnosis (i.e., its power to define the
sufferer as physically, not mentally, ill) eroded. Da Costa’s syndrome, also
known as ‘effort syndrome,’ ‘irritable heart syndrome,’ and ‘neurocirculatory asthenia’ made an appearance among Civil War veterans at about the
same time (Wood 1941). The 1950s saw the emergence of chronic brucellosis (Spink 1951). In the 1970s, persistent fatigue was often ascribed to
hypoglycemia. Currently, a number of fatigue-related syndromes co-exist
and overlap with CFS, e.g., fibromyalgia, multiple chemical sensitivity
syndrome, Gulf War syndrome.7
Fatigue syndromes have also been described in other societies. Neurasthenia persists as a formal category in Chinese psychiatric nosology
(CCMD 1995), despite years of intense debate over its nature and proper
definition (Lin 1989; Rin and Huang 1989; Ware and Weiss 1994). It serves
as a popular idiom of distress in Hong Kong, where it connotes not fatigue
so much as ‘feeling stressed’ or ‘having a nervous disposition’ (Lee, 1998).
Fatigue and/or weakness are part of nervios in Latin America (Davis and
Low 1989), dhat syndrome in India (Bhatia and Malik 1991), and hwa
byung in Korea (Min 1993).
ILLNESS EXPERIENCE IN CHRONIC FATIGUE SYNDROME
Sufferers characterize the experience of fatigue in different ways – a sensation of heaviness or being weighted down (what someone dubbed, ‘lead
legs’); a ‘drained’ feeling, as in a severe case of the flu; a sense of being
groggy or ‘drugged’; a feeling of weakness. Very often, fatigue is described
as lack of stamina. An inability to complete short, routine tasks – making
a bed, folding the laundry – is emblematic of this illness:
I remember calling my doctor and being in tears because I couldn’t take a shower and wash
my hair at the same time. Because I didn’t have enough strength to wash my hair and to
stand up to finish taking a shower. I’d have to take it in stages. And then when I got out of
the shower, I’d have to sit down, or lie down, before I could dry myself.
I couldn’t walk to the mailbox and back. I would go down to the mailbox, walk halfway
back, and sit down in the driveway, and just sit there. My mother would have to come out
and get me.
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We have a shopping plaza not even three minutes from here. So sometimes I take the car
and I go up there. But by the time I park the car, get out of the car, walk to the store, and just
take a little turn around Woolworth’s, I’m exhausted. And then I’m afraid to drive because
I’m so exhausted I’m shaking. So it’s just not worth it.
Persons with CFS also find themselves greatly slowed down relative to
the pace they remember maintaining prior to illness onset. They walk more
slowly and conserve steps. They do one thing at a time instead of several.
They break activities down into chunks and spread them out. They stop
‘pushing themselves’:
I’m not pushing myself anymore. If I get tired, there are days I’ll not do a whole lot. I’ll
say to myself, ‘That’s o.k. You don’t have to do that today. It’ll still be there tomorrow.’
In my life I was always going ninety miles an hour. I’ve been forced to stop and instead of
doing five things at a time, do one thing. All my life I’ve tried to do more than one thing at
a time. Now what I do is one thing and only one thing at a time.
When I think of a day, I try to plan going from here to there and doing it in as few steps
as possible. How many times am I going to have to get out of the car when I go shopping?
That sort of thing.
Narrative accounts by individuals with the illness suggest a fluctuating
course for CFS in which symptoms ebb and flow over short periods of
time.8 Symptoms may vary independently or together. They may change
in the course of a day, from day-to-day, monthly, or, not infrequently, with
the seasons, suggesting a pattern of ‘nested cycles’. The notion of nested
cycles specifies the meaning of short-term ebbs and flows, revealing that
meaning to be multiple.
In uncovering ‘nested cycles’, subjective accounts allow us to elaborate
on the idea of fluctuating course. The narratives also reveal the significance
of ‘payback’ – the exacerbation of symptoms following (over)exertion –
and of the unpredictability of symptom change.
Individuals with CFS routinely complain that their symptoms change
unexpectedly and inexplicably. Other than knowing that overexertion will
trigger payback, they are unable to guess when a relapse will occur, and
at a loss to explain it when it does. Many sufferers devote large amounts
of time and effort to trying to identify patterns and causes of ‘flare-ups’ so
as to bring the unpredictable under control. Almost always, these efforts
prove fruitless.
It’s extremely unpredictable. I can go to bed at 9:00, 9:30, 10:00 and feel reasonably good.
And I think, ‘This is great. I’m going to be able to get up tomorrow, and I’m going to be
able to do something.’ And the moment I wake up, I’m aware that I’m very sick. In just
three hours, having gone to sleep feeling reasonably good, three hours later I can wake up
knowing immediately that I’m sick.
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I live every day, not as if it were my last day, but I never know how I’m going to feel tonight
or tomorrow morning. I don’t take anything for granted. It’s hard to explain. I just never
know how I’m going to feel.
QUALITIES OF DISTRESS IN CFS AND CULTURAL
EXPECTATIONS FOR SOCIAL LIFE AND PERSONAL
CONDUCT IN LATE-TWENTIETH CENTURY UNITED STATES
Constant activity. Persons with CFS may lack stamina, but they live
in worlds where constant activity is the norm. The demands of career,
spouses/partners, children, aging relatives, and responsibilities to the
community must all be met by young-to-middle-aged adults, particularly
women, in the worlds CFS sufferers come from – working-and-middleclass worlds in late-twentieth century United States.
Consider contemporary work habits. Always subscribers to the work
ethic, Americans are devoting even more hours than previously to their
jobs – a total of an extra month more per year, by one recent estimate
(Schor 1991). Jobs define who we are and how we feel about ourselves;
success at them is a powerful indicator of the well-led life. In recent
years, workers have found they have to try harder – arrive earlier, stay
later, appear brighter – to avoid being ‘downsized’ from their jobs. If they
succeed, they are rewarded with the tasks their less fortunate, now departed
colleagues have left behind.
Since the seventies, women as well as men have held jobs, pursued
professions; the ‘traditional’ gender division of labor in which women
attended to domestic tasks while men provided household income is no
more. In fact, two incomes are generally considered essential if families
are to sustain a middle-class lifestyle. The result? Men as well as women
are now working in and outside the home.
Among the implications of these new lifestyle patterns are longer work
days and work weeks. Not only are people spending longer hours at their
jobs, each adult in a two-career household also works ‘after hours’. Work
days stretch out into evenings. Weekends, once the province of leisure
activities, have become the time to ‘catch up’ – on laundry, grocery shopping, cooking (for the upcoming week), paying bills, and ‘quality time’
with the kids.
CFS sufferers cannot keep up with ‘stretched-out’ work days and work
weeks. The contrast between this level of activity and the level a person
with CFS, on a ‘good day’, can sustain is revealed in the following
reflection by a study participant:
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Sometimes I’m tempted to say to my sister – ‘Wow! I’ve had a really busy day today.’ Now
for her a busy day would be she worked – taught – left her house at 6:00 a.m. to go to work.
Got home at 4:00. Went to exercise for half an hour. Went grocery shopping. Came home.
Picked up her kid from play rehearsal. Came home. Did some work for the next day. Now
that’s a busy day. For me a busy day is I got up in the morning, did the dishes, tried to do
ten minutes of yoga, went to acupuncture, took a long nap, played the piano, cooked my
supper, and was back in bed by 7:00 p.m. That’s a really, really action-packed day. That’s
my frame of reference now.
Speed. Daily life has an unmistakable rhythm – a pace at which it proceeds.
The pace is different in different settings: we think of urban life as outpacing rural, and of things moving more quickly in some cities than others
(Levine 1997). Life paces vary among cultures, of course, and across
climates and countries. In the U.S., the pace has always been set for
the able-bodied. Traffic lights turn green before elderly or handicapped
persons can finish crossing the street. At large supermarkets, the check-out
process moves too swiftly for impaired persons to place purchases on the
conveyor and have payment ready when the total is rung. Hesitate too long
at the ATM, and you will be queried as to whether you ‘wish to continue’,
or worse, find your transaction canceled entirely.
In recent years, the pace of everyday life has been accelerating. The
increasing speed of communication illustrates. Less than a dozen years
ago, the primary means of sending and receiving written messages was the
U.S. mail. Letters took several days to cross the country, a week or more
to reach Europe. Communications to other continents might take a week,
two weeks, or longer to arrive at their destinations.
Then FAX technology arrived and with it, instant contact. Sending and
receiving written messages no longer took time. In no more than the few
moments required to dial a telephone number and read pages through a
document feeder, one could be in touch with someone on the other side of
the planet.
Now e-mail has made FAXing seem slow and cumbersome. It takes
so much time to get up from one’s desk or computer terminal and walk
to a machine; wait, perhaps, for it to be free; get the phone connection
once the number is dialed; and watch as the pages move, line-by-line,
into the exit tray. How much simpler, how much quicker, to remain at the
computer terminal, by-pass the production of hard copy entirely, hit ‘send’,
and watch the message disappear to its destination.
The quickening pace of life is also reflected in the ‘24-hour day’. The
convention of conducting business within stipulated time frames is steadily
disappearing. We can now bank or shop by telephone or computer, at any
hour of the day or night.
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Businesses use speed to gain an edge over their competitors. A
restaurant chain seeking to attract noon-time customers advertises a ‘fiveminute lunch’. The success of ‘fast food’ establishments is founded on
quick service, not the quality of the fare. Recently a large oil company
introduced the ‘speed pass’. Armed with this small plastic cylinder, one
‘flies’, not drives, into gas stations, brushes the cylinder lightly over a
scanner, fills the tank, and ‘flies’ away. Even the few moments needed to
insert a credit card, punch in a few numbers, and take a receipt have been
eliminated from the pumping process, in the interest of increasing sales.
Standards for speed are being ratcheted up as persons suffering from
CFS find themselves slowed down. They feel ‘left behind’ as a result –
‘standing on the platform after the train has left’:
Our society is operating at a frantic pace, and if you can’t keep up you often end up standing
on the platform after the train has pulled out. Like I have to go at a certain pace. And
everyone else is rushing by me. Everything is going so fast I can never quite get there or
keep up with it. It’s a very lonely feeling.
‘Scheduledness’. Employment in the U.S. has almost always meant
appearing at a given place, at given times that are inflexible and narrowly
defined, and continuing to do so day after day. To keep their jobs,
employees must be prepared to perform particular activities at appointed
hours – attend a meeting at 2:00, call a client at 4:00, take a break at 10:30.
They must be able to make appointments, and other commitments, in
advance and fulfill them regularly and reliably. They must meet timelines
and deadlines. Work life is strictly scheduled.
Now it appears that our cultural penchant for ‘scheduledness’ is
expanding into other domains. Leisure is scheduled: reserve a tennis court
for 2:00, tee off at 8:00. Social life is scheduled – weeks or months in
advance. Even seeing spouses and children often requires an appointment.
Americans are infamous for being slaves to their ‘calendars’. ‘Lunch
next Friday?’ ‘I’ll have to check my book and get back to you.’ A full
calendar is a sign of a successful life, a ‘too-empty’ one cause for concern.
The course of CFS, in contrast, renders life unpredictable, as we have
seen. Unpredictability makes scheduling impossible:
One of the most distressing and irritating things about this illness is that you can’t plan
anything the way you once did. Because you never know how you’re going to feel. I was
making plans to do something with relatives the other night and it all depends. I can make
plans but I don’t know if I’ll actually be able to show up!
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PROCESSES OF MARGINALIZATION
Processes of marginalization refer here to social influences that push sick
persons toward the periphery of their everyday social worlds. Marginalizing forces are one set of social processes contributing to the systematic
‘unmaking of the lifeworld’ in chronic illness (Good 1994; Scarry 1985).
Four types of marginalizing processes are thus far discernible in the
reported experience of persons with CFS.9
Role constriction. Role constriction refers to the increasing inability of
chronically ill persons to fulfill various social functions, such as parent or
spouse (Estroff 1993; Estroff et al. 1991). Here we examine role constriction as it applies to employment for persons with CFS, detailing the ways
symptoms interfere with work performance to place CFS sufferers at risk
for job loss.
Simply getting to the workplace represents a daily challenge if one has
CFS. Daily routines – waking up, showering, dressing, transporting oneself
– become major hurdles. The unpredictability of the illness course undermines attempts to conform reliably to job schedules. Basic communication
skills needed at work – listening, speaking, writing – are compromised
by cognitive impairments. Lack of stamina interferes with getting things
done, limiting productivity on the job. Chronic pain in muscles and joints
is a constant distraction. Impairments make it necessary to ask for help
from others, who may feel burdened and resentful as a result. And, as one
respondent explained, the very fact of being unwell
affects my general state of competence. If you don’t feel healthy, if your body isn’t working
well, it undercuts this sense of confidence that you almost didn’t know was there, connected
to your body. And that in turn undercuts your performance.
In these and other ways being ill sets one apart from one’s co-workers.
The ill worker is identified as ‘different’, whether or not the presence
of illness is disclosed. Questions are raised about competence, and jobs
placed in jeopardy. Marginalization intensifies as the individual moves
from being ‘different’ to being unemployed.10
Delegitimation. Delegitimation here denotes systematic disconfirmation of
the experience of being ill. People with CFS encounter delegitimation
at every turn. Their subjective sense of sickness is called into question by friends, colleagues and even family members, but most often
by health professionals. Delegitimizing encounters can take a variety of
forms. Certainly one of the most frequent is the interpretation of one’s
complaints as ‘psychosomatic’. Lack of observable evidence of illness
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forms the principal justification for the psychosomatic interpretation. For
lay people this means that CFS sufferers ‘don’t look sick’: they’re not pale,
thin, in wheelchairs, or sporting casts. For health professionals it means
no ‘objective’ indications of damage or dysfunction are discernible in the
results of laboratory tests. Gender stereotypes creep into these interpretations as well, such that women find their experience reduced to an artifact
of the menstrual cycle, the effects of pregnancy, or depression.
A second type of delegitimation turns on the trivialization of symptoms. The fact that many of the terms used to describe CFS also gloss
minor complaints – fatigue, headache, sore throat, muscle pain – opens
the door to a misplaced equating of profound distress with everyday sorts
of disturbance. So CFS sufferers, in trying to articulate their experience,
typically elicit a disconfirming response: “You’re tired? I’m tired too! Half
the world’s tired. The whole world’s tired! Big deal.”
Responses to delegitimation range from outrage to self-doubt to
internalization of the disconfirming interpretation. One woman reported
wanting to reach across the desk and choke her doctor with his necktie, so
infuriated was she at his having ascribed her condition to ‘a problem with
her marriage’. Many confess to having questioned their own perceptions as
a result of delegitimizing encounters, asking themselves if they are really
‘only crazy’ after all? Some relinquish their own definitions of reality and
behave as if ‘nothing were wrong,’ as in the case of this woman, who
explained:
When I first got this 10 years ago I just tried to keep going 100%. I kept working full-time. I
kept trying to do everything, just as if nothing was wrong. Because the doctors kept telling
me nothing was wrong! So I figured I just had to keep going!
People with CFS whose experience is repeatedly delegitimized often
decide to keep their condition secret. This disrupts their sense of
connectedness with others and directs limited energy into the effort to
dissemble. The gap then widens between the experience of illness and the
‘world of wellness’, leaving people feeling in some strange way like they
‘don’t exist’:
It was my birthday and the only thing I got in the mail was my Medicare handbook. No
one remembered my birthday. It just compounds the isolation. It kind of says to you when
nobody remembers, ‘Well, maybe I’m not really here!’
So I kind of feel like my life is over. Sort of like the river passing by and you’re watching
it. Once in a while you stick your foot in the river and remember what the water was like
but you’re not really swimming in the stream.
Impoverishment. Chronic illness often means that people are impoverished. Expenses increase at the same time that income is reduced. In
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the case of CFS, increased expenses stem from the costs of non-biomedical treatments and other means of illness management – acupuncture,
homeopathic remedies, vitamins, nutritional supplements, non-prescription medications, psychological counseling – that are not covered by
insurance. CFS sufferers are also finding that the array of services reimbursable through basic health insurance is steadily diminishing. Increasingly, insured persons are being forced to pay out-of-pocket for services
(e.g., allergy shots, consultations with specialists) that used to be part of
standard coverage. Health care is becoming more expensive for all of us
as the effects of ongoing reforms take hold. However, the financial burden
falls perhaps most heavily upon the chronically ill.
Incomes are reduced for CFS sufferers and their families when the
ill person leaves or is forced out of a job, or significantly reduces hours
worked. Some rely on private disability insurance or qualify for public
entitlements, which typically replace about half of the recipient’s former
monthly income. Savings are often depleted in completing the transition
from employment to disability, as persons with CFS often have to struggle
for extended periods to make successful claims.
The effects of income reduction make themselves felt as impoverishment.11 In its most benign form, this means doing without non-essentials,
or sometimes, cutting down on essentials. People forego vacations, stop
going out to eat, postpone home repairs, garage the second car. One study
subject rations electricity and hot water, turning it off after breakfast and on
again in the evening. Several study participants have felt threatened with
the loss of their homes. Some have sold possessions to generate cash. One
individual went months without hot water. Another lost her home when
she lost her job; she and her son had to move in with her parents.
These are not people living in grinding poverty. Most have advantages
– assets, credit, insurance, and relatives with money. But they live in
straitened economic circumstances compared to when they were healthy.
Single wage-earners, usually women, feel it most, followed by families
which had formerly relied on two full-time incomes. Families where the ill
person was a full-time homemaker before CFS are least affected financially. Still, economic constraints ripple out to touch everyone when a
family member is disabled by chronic illness. The marginalizing effects
of financial hardship make themselves felt as those affected become
disengaged from their previous ways of life. This case example illustrates:
Susan Smith lives with her husband, Jim, two daughters, and assorted dogs, cats and farm
animals in a rural area of northern New England. She is 35 years old. Jim is a self-employed
carpenter. She herself was employed as a manufacturing coordinator in a company that
produces materials for clinical laboratory testing and medical research when she and two
co-workers developed stomach cramps, diarrhea, and ‘funny flashes out of the corners of
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315
their eyes.’ At the time, Susan and Jim were in the process of buying an old farm house
that they intended to renovate. It was summer, 1990.
In the months that followed, Susan’s health progressively worsened. There was a period
of intense exhaustion followed by the onset of joint and muscle pain. She developed
headaches that at their worst, appeared daily and left her nauseous and shaking. Later
she experienced concentration and memory problems and insomnia.
After she became ill and could no longer work her customary 50-hour week, Susan
began, as she put it, to see ‘the writing on the wall’ at her job. She was moved to a smaller
office, began to be left out of key decisions. She worked part-time for a while. In November,
1992, she was fired.
Susan had long-term disability insurance through her employer, but despite several years
of struggle, was unable to access it. She was also entitled to several months’ extension of
her health care insurance, but couldn’t obtain from her former employers the paperwork
necessary to file. Since the entire family was insured through this policy, this meant that
no one knew whether they were covered or not until Susan finally obtained Social Security
Disability Insurance and accompanying Medicare benefits. They had now relied solely on
whatever income was generated through Susan’s husband’s carpentry for about a year.
Progress toward the goals Susan and her husband had set for themselves ground to a halt
with the loss of Susan’s job. Plans for the house were put on hold, with the result that when
I met them in the summer of 1994 the family was living in five small rooms with stripped
wallpaper and bare floors. It was summer, and a brisk breeze rattled the windowpanes,
suggesting all too clearly how little protection they must offer in winter. Heat came from
a single wood stove. Susan told me that closing the bathroom door in January for privacy
while bathing could mean the temperature would drop to 40 degrees. At one point, they
sold possessions to get by.
Susan’s total SSDI benefits, including allocations for herself and the two children, total
about half (55%) of the salary she was making when she left her job. To boost the family
income, Jim abandoned the carpentry business he had been developing over the past five
years in favor of spending the summer season as a commercial fisherman, which paid well
but required six and seven-day weeks from April to November. In addition, he did the
yardwork and household chores that Susan was now incapable of. Susan was concerned
about the strain of overwork and the potential damage to his business, which for him meant
fulfillment of a lifelong dream. Ultimately, she feared for their relationship if Jim became
too burdened and frustrated.
Gradually, the financial strain eased. When I next spoke to Susan in the winter of ’95,
she reported that her husband’s hard work and a lucrative fishing season the past summer
had enabled them to pay off most of their accumulated debts. As a result they were able
to get a bank loan to underwrite the renovation project. Groundbreaking was scheduled for
the spring.
When I arrived for my second annual visit in the summer of 1995, I found construction
well underway and Susan more animated than she had seemed the summer before. She was
still worried about her husband, however, who had embarked upon his second summer of
commercial fishing and, as Susan remarked in her understated Yankee style, “wasn’t happy
about it.” Susan, in her turn, felt guilty for being the reason her husband was making this
sacrifice. “It makes me feel guilty because he’s working so hard,” she explained. “If I was
working and wasn’t so sick and didn’t have the medical bills then he wouldn’t have had to
change his occupation so we could keep our heads above water.” She hoped they would be
doing well enough so that he wouldn’t have to hire out as a fisherman again next summer.
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But he did. The summer of 1996 marked the third, and, Susan insisted, the last season
of fishing for Jim. Their financial situation had stabilized, but he had reached the limits of
his tolerance. Next year he would return to his carpentry, and they would make ends meet
‘somehow.’
Social isolation. To varying degrees, people with CFS become socially
isolated. The impetus for this may come from others, or it may come from
the ill individuals themselves. The unpredictability of the illness course
in CFS is a major impediment to social interaction. Because they cannot
predict their condition on any given day, persons with CFS often make
dates or plans with others only to be forced to cancel, as we have seen.
Friends and acquaintances take offense at these unexpected changes. After
repeated instances, they may simply decline further overtures and let the
relationship wither away.
The ambiguous status of CFS also contributes to social isolation. The
fact that it is not well-described, explained, recognized, or accepted as an
illness category makes it hard to explain – to ‘share with somebody’ – as
this respondent points out in comparing the illness to cancer:
Cancer would be better. I shouldn’t say that, because I don’t think it would be better. But it
would be easier to share with somebody. I can’t tell people about this, because first of all,
I don’t know what to call it. I don’t know how to describe it!12
An illness about which so much is unknown might be contagious. Fear of
contagion can also cause friends and acquaintances to ‘back away’:
In some ways you’re treated as though you have AIDS. A lot of people back away because
they know you have a chronic illness and they have a hard time dealing with that. But
then a lot of people back away because they hear you have a chronic illness that is not
understood. I probably don’t see the majority of my friends that I had before I got sick. So
many of them have just kind of backed off.
Social life in the U.S. is predicated upon an expectation of health, as
the earlier reference to ‘speed’ in American culture implied. This means
that sick people whose condition already precludes full social integration
must do nothing to call further attention to their impairments if they wish
to preserve whatever degree of social connectedness they still possess. The
result is a kind of ‘silencing’ of talk about illness. Sick people, even more
than most of us, cannot admit to feeling less than ‘fine,’ cannot make reference to illness-related issues or activities, cannot discuss their limitations.
If they do, they risk compounding their social isolation through abandonment or outright rejection by others. But if they don’t, they may find they
have preserved outward social ties at the expense of their inner authenticity.
Paradoxically, alienation from one’s self as well as from others ensues from
ill individuals’ attempts to remain a part of the social world:
SOCIAL COURSE IN CHRONIC ILLNESS
317
The only thing you can talk about is this illness because you can’t ever escape consciousness about it. It’s in you. It pervades your whole life. And when you see the reaction of
people, it brings you up short. I tended to alienate people because they weren’t able to
help me. And I would become impatient with that. And they would become impatient with
that. So consequently you withdraw and become more alone with the illness. And there’s
another step in the process. Once you become so alone with this whole thing, you learn
to avoid the illness in conversation and to talk about other things so that people don’t
shun you. And when you do that, you’re always speaking to people with other than your
own reality. Because you’re sick! And you’re talking to people about lamps and tables and
things. So you’re not fully there with people. But that’s the trade-off you make for survival
because you need contact with others.
If rejection by others is one source of social isolation for people with
CFS, another stems from their own tendencies to withdraw from social
life.
Several particular attributes of CFS can prompt withdrawal from social
activities. Persons with CFS may stop committing themselves to social
activities out of fear of not being able to keep up. As one man put it:
I’ve cut down on my social contacts because I can’t say for sure I’ll be up to something that
goes on. Let’s say there’s some social function. I know I’ll have to rest, or do something
else in the middle. So I’d rather not commit myself to things that are going on like I used
to do. Because of a sense that I couldn’t hack it. So my involvement is more a solitary kind
of thing. Like I’ll go down to the river by myself, because I know I can pace myself.
Cognitive impairments can cause people to avoid social interactions
because they feel unable to participate normally in conversations. “When
I am amongst people I get very embarrassed because I can’t concentrate,
can’t think,” someone explained. “So I like to just not get myself into those
sorts of situations. So I kind of stay away.”
Over time, the effects of social isolation compound, making connecting
increasingly difficult. Already marginalized and busy dealing with the
illness, people with CFS find they have lost the sense of a world shared
with healthy people. This both makes communicating harder and increases
social distance. “You start drifting away from people because you start
losing things that are in common,” one person said. “You can’t talk about
work. You can’t talk about this or that. I don’t know what to talk to people
about! I’ve been sick so long this is my life!”
PROCESSES OF RESISTANCE
The construction of narratives as a tool for opposing the ‘unmaking of
the lifeworld’ has attracted considerable attention among anthropologists
seeking to understand and represent illness experience (Garro 1992; B.
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Good 1992, 1994 [ch. 5]; M.J.D. Good et al. 1990; M.J.D. Good 1995
[ch. 8]; Mattingly 1994). However, ‘narrativization’ is only one among a
number of possible strategies that can be applied to re-constitute worlds
‘unmade’ by illness, as B. Good (1994: 128) has pointed out. Here we
examine briefly another kind of ‘re-constituting response’ – one that
involves ill persons as agents acting directly in and on their social worlds.
These actions – here termed ‘resistance’ – are intended either to preserve
the everyday lifeworld as it existed prior to illness onset, or to re-make that
world in ways that allow for continued participation in social life.13
Preserving worlds of wellness. CFS sufferers use various means of approximating or simulating ‘normal’ levels of activity. They may ‘cut corners’ –
scrutinizing daily routines for instances of disposable physical exertion and
eliminating them to reduce movement. Teachers with CFS remain sitting
at their desks instead of standing at the blackboard or moving around the
classroom. Women doing housework ‘batch’ tasks involving the negotiation of stairs to another floor. Errand runners arrange shopping trips to
maximize the number of needed purchases made in one stop. One individual found she was able to continue to participate in backyard softball
with her husband and children by carrying a stool with her to the outfield.
When the ball came her way, she got up to make the catch and the throw,
then remained sitting for the rest of the inning. When the ball went in
another direction, she sent the dog to fetch it.
‘Passing’ also enables persons with CFS to remain in the social world.
‘Passing’ refers here to the cultivation of an impression of health. Ironically, the same characteristic that contributes to delegitimizing experiences
– an absence of obvious physical signs of illness – also makes passing
easier. CFS sufferers can ‘pass’ by using make-up to create a robust
physical appearance, by avoiding social situations (such as sports outings
requiring vigorous and sustained exertion) where impairments might be
inadvertently revealed, or eschewing visible indicators of disability, such
as canes and handicapped license plates. One respondent offered this
account of ‘passing’ as a response to the marginalizing effects of chronic
illness:
I spend a lot of time covering up so it’s not a noticeable thing. It’s not something I want
people to know about me because I feel it will make people think differently about me.
People treat you differently if they know you have an illness. I don’t want people assuming
anything about me based on something like that. I don’t want people watching me carefully.
I don’t want people to think I’m nuts!14
We have seen that ‘payback,’ the exacerbation of symptoms following
episodes of overexertion, is a distinguishing feature of illness course in
SOCIAL COURSE IN CHRONIC ILLNESS
319
CFS. Persons with CFS respond to payback in different ways at different
times. Some work hard at learning to avoid payback by ‘living within their
limits.’ Others gamble, risking levels of activity they know are likely to
exact a cost, but nonetheless hoping that ‘payback’ will somehow fail to
follow.
Still others accept payback as a constraint under which they can
continue to take part in social worlds of healthy people on their terms. By
deciding to participate and pay the price, these individuals can function
for short periods as if they were not ill. Faced with the choice, as one
person put it, “of having a life with payback or no life,” they choose
the former. They immerse themselves completely in family outings,
recreational activities, house projects, business trips – matching the
pace set by others and missing nothing. Then they ‘pay’ with increased
pain, fatigue and debilitation, knowing that for them, it is ‘worth the price’.
Re-making the lifeworld. CFS sufferers also resist the effects of marginalizing forces by re-designing their worlds in ways that allow them to feel
and function better and sustain meaningful, if altered, connections to social
life. Worlds, and lives, are ‘re-made’ in a process of ‘downshifting’.15
Many persons with CFS report having lived ‘overtime lives’ before
onset of their illness. They travelled in the fast lane – holding down
stressful jobs, working multiple jobs, parenting, homemaking, volunteering, caring for elderly relatives. CFS forced them to break habits of, as
someone said, “overdoing, overworking, over-trying-to-please-everybody,
and just over-everything,” and shift down.
Cutting back on one’s range and level of activity is an essential
part of the downshifting project. In the workplace, cutting back involves
decreasing hours to part- or ‘only’ full-time – by changing jobs, drawing
upon large accumulations of sick days, ‘cashing in’ on professional capital
as a valued employee (to win special accommodation), eliminating nights
and weekends. It involves reducing responsibilities, and stress, by voluntarily moving down the corporate ladder. It means controlling physical
exertion by securing a ‘desk job’.
At home, to cut back is to ‘do less’ of any given thing – two kinds of
home-baked cookies at Christmas instead of half-a-dozen, for example. It
is to do things the easy instead of the hard way – serve prepared foods
instead of cooking from scratch, purchase only clothing that does not
require ironing, shop by mail. Some women have significantly reduced
daily demands and responsibilities by shifting the burden of care – doing
fewer favors for friends and relatives, pressing spouses into service for
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more help with housework and parenting. Activities considered disposable
may be cut out entirely – volunteer work, political involvement, recreation.
For some, cutting back involves re-calibrating personal expectations for
performance. People report relinquishing principles of perfectionism and
achievement to settle for doing things ‘less well.’ At work, this can take the
form of declining opportunities for professional advancement. Part of the
experience of CFS for these individuals is learning to live a life of ‘good
enough’:
A lot of things you can’t do as well as you would like to do, or used to do, but you can do
them well enough. I’ve lowered my standards. ‘Good enough’ has become a way of being
for me.
What mechanisms are used to accomplish the objective of ‘cutting
back’? One is prioritizing – as one person put it, “getting your priorities
in order: deciding, picking, on any given day, the things you most want
to do and not worrying about the rest.” Another mechanism is trade-offs:
sacrificing one activity or life domain – work, friendships, recreation – in
the interest of preserving another. Some women have learned to ‘say no’
as a way of cutting back, and found it a liberating experience:
‘No’ is a little word with a lot of power behind it. It can make you assertive in a positive
way. It makes you very stable in the fact that when I say no I mean no and that’s it! This is
it, you know? I think it gives me a little more self-confidence, a little more self-assurance,
if I can say no and mean it. Like I said, it’s a very little word with a lot of power behind it.
Having one’s world ‘unmade’ by the onset of serious illness or some
other profoundly disruptive experience creates a need to make meaning of
the situation – to find a reason, a purpose, or some other way of making
it make sense. For an identifiable subset of participants in this study,
meaning-making has taken the form of attaching a positive value to both
the downshifted life and the event that precipitated it. These people point
to increases in inner strength, compassion, and spirituality; to confronting
and resolving longstanding psychological and interpersonal problems; to
learning to cope with negative emotions; to building healthier and more
balanced lives as a result of being ill. They square the fact of their illness
with expectations for rationality, fairness, and even progress, by defining
CFS as not only an affliction but also an opportunity for personal growth:
I’ve found out a lot about myself. It’s been a positive experience. This illness is like
drinking a can of Jolt. It puts you on notice that you don’t have control over everything. It
reinforces your human frailties. But it also forced me to go back into the world for another
bucket more times than I thought I could. And because of that, I know I can face anything.
Anything at all.
SOCIAL COURSE IN CHRONIC ILLNESS
321
I see the illness in a positive way because whatever it was that humbled me gave me a real
chance to look at myself. I’ve tempered myself. I’m more careful about myself. Taking
care of myself in terms of food and exercise. It’s made me a humbler person.
I’ve slowed down a lot and I needed to slow down. I was burning the candle at both ends.
Work all day. Out all night. I was working around the clock. And you can’t do that.
I almost see it as a passage or a season that I’ve got to go through. Not only will it go away,
but I will look back on it with gratitude for lessons learned. It’s not something I like, but I
can see I’ve grown and changed because of it.
DISCUSSION
This paper has drawn on data from a study of illness course in chronic
fatigue syndrome to begin to outline a conceptual model of social course
in chronic illness. Taking earlier formulations of sociosomatics and social
course as the starting point, the empirical materials have been used to
elaborate a set of social processes – role constriction, delegitimation,
impoverishment, social isolation, resistance – that form the core of the
model in the particular case of CFS. Some attempt to represent pieces of
the cultural backdrop to these processes and the interactions that set them
in motion has also been made.
The types of social processes defined and described here have also
figured in the work of other medical anthropologists. Estroff, for example,
makes use of the concept of role constriction in her studies of schizophrenia. For her it serves as a mediator of chronicity – a process that helps
to construct the ‘I am’ illness identity she associates with schizophrenic
illness (Estroff 1993; Estroff et al. 1991). Here, in contrast, the term is
used to help define a position in social space.
Delegitimation appears quite frequently in Kleinman’s discussions of
illness experience and suffering. For example, he has used delegitimation (and relegitimation) to explore the value of resistance as an analytic
category for anthropological studies of suffering (Kleinman 1992). In
Kleinman’s usage, delegitimation appears to refer not so much to disconfirmation of the experience of illness, as is the case in CFS, as to the
de-valuing of particular forms of experience – not necessarily narrowly
illness-centered – by actors in local social worlds.16
Resistance has commanded considerable interest on the part of anthropologists. Following Scott (1985, 1990), most of this work has used the
term to describe indirect protests aimed at the oppressive exercising of
political power (Comaroff 1985; Ong 1987).17 Usually the protests are
symbolic. The acts referred to here as resistance are neither political nor
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symbolic. They are better described as pragmatic, active efforts to counter,
even undo, the effects of particular social influences on individual lives.
CONCLUSION
If I have deployed the concepts of role constriction, delegitimation and
resistance in different ways than others, it is to begin to assemble them
into a larger conceptual framework. The framework depicts the intersection
of particular qualities of distress with culturally specific expectations for
social life and personal conduct in the late-twentieth century United States
to activate microsocial processes of marginalization. Processes of marginalization are opposed by strategies of resistance, initiated by ill persons to
preserve or maximize integration in their immediate social worlds. Over
time, their shifting relationships – as first marginalization, then resistance,
predominates – define a trajectory in which ill persons move back and
forth, further from and closer to, the perceived centers of these worlds.
Triggered by the juxtaposition of patterns of distress with cultural expectations, marginalizing processes and acts of resistance interact to construct
social course.
These back-and-forth movements accumulate in different combinations
to define various types of course. When symptoms ebb and flow, as in CFS,
the course may develop as multiple back and forth moves. In an illness
where impairment steadily intensifies, illness course may take shape as a
series of moves away from the perceived social center.
Clearly a number of caveats should be inserted at this point.
First, the model is preliminary. It is specific to chronic fatigue
syndrome as described by a single sample of persons suffering from this
illness in the 1990s in the United States. It has not yet been subjected
to examination using longitudinal data, even for this illness. In fact, it is
intended to guide the analysis of prospective data on illness course in CFS
gathered as part of this study.
Second, the model is partial. The parts presently missing suggest questions that must be asked to move the work forward. What other microsocial
processes – for example, stigmatization – should be included in developing
the model further for the case of CFS? In applying it to other illnesses?
How are these processes interrelated? Are they additive? Overlapping?
Where do social structural factors fit, e.g., systems of disability determination, health insurance systems as they make the transition to managed
care? And finally, what are the impacts of social intimates – supporters –
who are not constricting the roles or delegitimizing the experience of ill
persons but underwriting their efforts at resistance?
SOCIAL COURSE IN CHRONIC ILLNESS
323
Even in its present preliminary and partial form, however, the model
points to a number of observations about core concepts and relationships
in medical anthropology.
It suggests a way of thinking about illness experience – not narrowly as
subjective feelings of distress or illness-focused acts (defining symptoms,
attributing cause, seeking help, complying – or not – with treatment), but
rather more broadly, as the continually developing trajectory of a life lived
with illness. CFS sufferers’ efforts to resist marginalization by preserving
and re-making their social worlds lead directly to the recognition that individual actors as well as social influences play a role in constructing the
experience of illness.
A different way of thinking about the relation of symptoms to society
is also suggested by this model.
In sociosomatic formulations symptoms are the primary object of
analysis – the phenomenon to be explained as responses to large-scale
social forces. Often they are imbued with symbolic meaning. Here symptoms figure more as the starting point than the end point of analysis – as
antecedents and in a sense, precipitants of the phenomenon to be explained.
Moreover, it is their social rather than their symbolic meaning that is
of importance – their implications for defining relationships between ill
people and their social worlds. We encounter the social meaning of CFS
symptoms when their presence suggests incompetence in the workplace,
triggering role constriction, or when they are considered not to count as
‘real’ symptoms, thus providing grounds for delegitimation.
Kleinman’s sociosomatic formulation of neurasthenic symptoms in
China interprets symptoms as responses to the ‘culturally cataclysmic’ – to
political trauma, chaos, violent upheaval. In contrast, the present analysis
focuses on the role of enduring cultural values and ongoing everyday
processes in shaping the experience of illness.
Finally, this work suggests a new working definition of social course
that follows upon recent, non-symptom-focused, formulations. This definition locates illness course in social space: specifically in the relations of
chronically ill people to their immediate interpersonal environments. For
chronic fatigue syndrome, social course consists of successive, bi-directional movements along a ‘continuum of marginality’ by persons living
lives with chronic illness.
ACKNOWLEDGEMENTS
The research reported here is supported by a grant from the National Institute of Allergy and Infectious Diseases (1 R29 AI 35359). The contribution
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of Toni Tugenberg, M.Ed., LCSW, to the collection and analysis of data is
gratefully acknowledged. Thanks and appreciation are also extended to
the persons with CFS who have given generously and repeatedly of their
time to this study, and to Byron Good, Mary Jo DelVecchio Good, Joseph
Dumit, Robert Desjarlais, and four anonymous reviewers, who provided
comments on the initial draft of the manuscript. The ongoing support of
Arthur Kleinman, M.D., and Anthony Komaroff, M.D., is also very much
appreciated.
NOTES
1. This is not to suggest that Kleinman is the only one to have concerned himself with
this issue. The social origins of illness and distress is a core concept and a major focus
of research in medical anthropology. This work, however, is intended specifically to
start from and build upon sociosomatics.
2. This definition pre-dates the re-conceptualization of somatization in which attributions
of underlying psychological causes are abandoned in favor of an emphasis on illness
behavior. New definitions characterize somatization as the tendency, by an ill person,
to articulate unexplained somatic complaints, attribute these complaints to physical
illness, and seek medical help for them (Lipowski 1988; Kirmayer and Robbins 1991a,
b).
3. The notion of ‘sociosomatic relations’ as a way of interpreting symptoms arose in part
out of an effort to convince clinical audiences of the importance of social influences
on illness. A 1998 special issue of Psychosomatic Medicine focusing on sociosomatics
(Kleinman and Becker 1998) indicates that this effort is ongoing.
4. Three such definitions exist. The first, known as the ‘CDC criteria,’ was developed
by researchers in the U.S. in the mid-to-late 1980s (Holmes et al. 1988). A second,
termed the ‘Oxford criteria,’ was formulated by a group in the United Kingdom
(Sharpe et al. 1991). The third comes from Australia (Lloyd et al. 1990). The CDC
criteria have recently been revised (Fukuda et al. 1994). Of these, only the CDC
definitions require somatic symptoms. The Australian definition requires particular
neuropsychiatric symptoms. No symptom requirement is specified in the British definition. Participants in this study meet criteria for the original CDC definition (Holmes et
al. 1988).
5. The predominance of white women in the study sample requires comment. The demographic characteristics of the population meeting case criteria for CFS have not been
clearly defined. The majority of CFS patients participating in clinic-based research
have been female. This no doubt reflects at least in part the fact that women more
frequently seek medical care. An early, but significant, attempt at estimating the U.S.
prevalence and incidence of chronic fatigue syndrome by the Centers for Disease
Control relied on “sentinel physicians” to refer cases. In that study, more than 80%
of persons with CFS were women, and most were white (Gunn, Connell and Randall
1993). In the first reported community-based epidemiological study of CFS, three
cases meeting CDC criteria were identified from among 3066 members of a health
maintenance organization. Two of these individuals were female, and two were white
(Buchwald, Umali, Umali et al. 1995). The sample for this study was drawn from
SOCIAL COURSE IN CHRONIC ILLNESS
6.
7.
8.
9.
10.
11.
12.
13.
14.
15.
16.
17.
325
the cohort of patients being followed by the Center for Cooperative Research on
Chronic Fatigue Syndrome at Brigham and Women’s Hospital, Boston, MA, Anthony
L. Komaroff, M.D., Director. Seventy-four percent of Center patients are women.
Most researchers in the U.S. use the term ‘chronic fatigue syndrome.’ Many sufferers,
arguing that CFS is a biologically based and therefore ‘real’ illness, not a psychiatric
disorder, insist on ‘chronic fatigue and immune dysfunction syndrome (CFIDS).’
For good historical accounts of fatigue syndromes see Aronowitz (1992), Straus
(1991), and Wessely (1991, 1994).
These accounts are reflected in scattered notations made by clinicians and reported
in the medical research literature (Gold et al. 1990; Komaroff and Buchwald 1991;
McClusky 1993; Wood et al. 1992). Most medical research is heavily ‘outcome’oriented, however. Typically, ‘outcome’ is operationally defined in the standard fashion
as a score on some indicator (or indicators) of symptom severity and/or functional
impairment, measured at a pre-designated, single point of follow-up, often one year
(Bates, Schmitt, Buchwald et al. 1993; Bombadier and Buchwald 1995; Bonner, Ron,
Chalder et al. 1994; Buchwald, Umali, Umali et al. 1995; Clark, Katon, Russo et al.
1995; Ray, Jeffries and Weir 1995; Vercoulen, Swanink, Fennis et al. 1996).
To clarify, my intent here is not to lay out a full-blown conceptual model and illustrate
it with longitudinal data. The project is at a much earlier stage, of empirically deriving
some of the components of that model and providing detailed accounts of them. Thus
the descriptions that follow are not attempts to represent ‘lived experience’ as that
experience is constructed over time. Rather they are intended as delineations and
elaborations of categories of process.
A more detailed discussion of role constriction in chronic fatigue syndrome as it
applies to work appears in Ware (1998).
For a detailed account of the experience of downward mobility among middle-class
Americans, see Newman (1988).
Similar sentiments have been expressed by chronic pain patients, who share many
experiences with CFS sufferers (Jackson 1992).
Kleinman (1992) suggests that resistance is useful as an ‘operational device’ for
analyzing mediating processes in the social course of chronic illness. It is for this
purpose that the concept of resistance is deployed here.
Viewed purely within the realm of social interaction, ‘passing’ is an effective
strategy for maintaining connectedness. It can be subjectively experienced as isolating,
however, because it requires that an important aspect of one’s inner reality remain
hidden. See p. 317, above.
The term ‘downshifting’ is borrowed from Saltzman (1990).
An earlier examination by this author of the relationship between suffering and
delegitimation in CFS was inspired by Kleinman’s work (Ware 1992).
An exception is Kleinman (1992), who uses the term in this sense but adds a second,
‘existential’, meaning of ‘interference’ with individual life plans and projects.
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