BVC Ideology of Cure Reflection

INSTRUCTIONSThis is a Reading reflection assignment.
Must be 1-2 substantial paragraphs in length (300-400 words).
If relevant, you are encouraged to paraphrase from the assigned texts, you must include page
numbers or other details to indicate where in the text the information has come from. You are
required to include a “work cited/bibliography” section. No outside research is required for the
assignment. NO PLAGIARISM, THERE IS DEDUCTION FOR PLAGIARISM.
Again, the idea is to highlight your own original thinking rather than summarizing someone
else’s.
RUBIC FOR GRADING
COMPREHENSION- demonstrate critical thinking and a sophisticated, nuanced grasp of the text
and its related issue with respect to the given prompt.
ORGANIZATION & DEVELOPMENT OF IDEAS- organized in a clear and logical fashion. Ideas are
connected clearly, flow smoothly, and fully integrated into the world.
OVERALL CLARIFY AND COHERENCE- writing is clear, even sophisticated with little or no
grammar throughout; vocabulary is appropriate for level of analysis.
1
The Meaning of
Sylllptollls and Disorders
Information contained in this book accurately conveys the spirit of my
work as a physician and researcher, but all names, characteristics, and
identifying details in the case histories have been changed.
Whatever is real has a meaning.
-MICHAEL 0AKESHOTT
([1933] 1978, 58)
For many Americans the meaning of disease is the mechanism
that defines it; even in cancer the meaning is often that we do not
yet know the mechanism. To some, however, the meaning of
cancer may transcend the mechanism and the ultimate ability of
medicine to understand it. For such individuals the meaning of
cancer may lie in the evils of capitalism, of unhindered technical
progress, or perhaps in failures of individual will. We live in a
complex and fragmented world and create a variety of frame­
works for our several ailments. But two key elements remain
fundamental: one is faith in medicine’s existing or potential in­
sights, another, personal accountability.
-CHARLES E. ROSENBERG
(1986, 34)
Illness and Disease
When I use the word illness in this book, I shall mean something
fundamentally different from what I mean when I write disease. By
invoking the term illness, I mean to conjure up the innately human
experience of symptoms and suffering. Illness refers to how the sick
person and the members of the family or wider social network
perceive, live with, and respond to symptoms and disability.* Illness
*In this volume I use the terms sick person and patient interchangeably. But in fact the former
conveys a more accurate sense of my point of view than the latter. Individuals who are
4
THE ILLNESS NARRATIVES
is the lived experience of monitoring bodily processes such as respi­
ratory wheezes, abdominal cramps, stuffed sinuses, or painful
joints. Illness involves the appraisal of those processes as expect­
able, serious, or requiring treatment. The illness experience includes
categorizing and explaining, in common-sense ways accessible to all
lay persons in the social group, the forms of distress caused by those
pathophysiological processes. And when we speak of illness, we
must include the patient’s judgments about how best to cope with
the distress and with the practical problems in daily living it creates.
IMness behavior consists of initiating treatment (for example,
changing diet and activities, eating special foods, resting, engaging
in exercise, taking over-the-counter medication or on-hand pre­
scription drugs) and deciding when to seek care from professionals
or alternative practitioners.
Illness problems are the principal difficulties that symptoms and
disability create in our lives. For example, we may be unable to walk
up our stairs to our bedroom. Or we may experience distracting low
back pain while we sit at work. Headaches may make it impossible
to focus on homework assignments or housework, leading to failure
and frustration. Or there may be impotence that leads to divorce.
We may feel great anger because no one can see our pain and
therefore objectively determine that our disability is real. As a re­
sult, we sense that our complaints are not believed, and we experi­
ence frustrating pressure to prove we are in constant pain. We may
become demoralized and lose our hope of getting better, or we may
be depressed by our fear of death or of becoming an invalid. We
grieve over lost health, altered body image, and dangerously declin­
ing self-esteem. Or we feel shame because of disfigurement. All
these are illness problems.
chronically ill spend much more time in the roles of sick family member, sick worker, sick
self than in the role of patient, which is so redolent with the sights and smells of the clinic
and which leaves an afterimage of a compliant, passive object of medical care. I wish to place
stress on the sick person as the subject, the active agent of care, since in fact most treatment
in chronic illness is self-treatment and most decisions are made by the sick person and family,
not by health care professionals. SicJ: person also sounds more appropriate for the model of care
I will advance. Care for chronic illness is (or should be) more like a negotiation among
therapeutic allies than actions the physician takes on behalf of a patient. The patient and the
practitioner bear reciprocal responsibilities, a point I will develop in chapter 15, where I
describe a model of care. In spite of these good reasons, it sounds excessively artificial to avoid
the term patient; hence I use the two terms interchangeably with the same meaning: more
person, less patient.
The Meaning of Symptoms and Disorders
5
Local cultural orientations (the patterned ways that we have
learned to think about and act in our life worlds and that replicate
the social structure of those worlds) organize our conventional com­
mon sense about how to understand and treat illness; thus we can
say of illness experience that it is always culturally shaped. Para­
doxical as it sounds, then, there are normal ways of being ill (ways
that our society regards as appropriate) as well as anomalous ways.
But conventional expectations about illness are altered through
negotiations in different social situations and in particular webs of
relationships. Expectations about how to behave when ill also differ
owing to our unique individual biographies. So we can also say of
illness experience that it is always distinctive.
Illness complaints are what patients and their families bring to the
practitioner. Indeed, locally shared illness idioms create a common
ground for patient and practitioner to understand each other in their
initial encounter. For the practitioner, too, has been socialized into
a particular collective experience of illness. Disease, however, is
what the practitioner creates in the recasting of illness in terms of
theories of disorder. Disease is what practitioners have been trained
to see through the theoretical lenses of their particular form of
practice. That is to say, the practitioner reconfigures. the patient’s
and family’s illness problems as narrow technical issues, disease
problems. The patient may suffer pain that interferes with work and
may lead to unemployment; self-absorption in a strict diet and
severe gastrointestinal discomfort may intensify the stresses of
school; or the fear of dying brought on by a heart attack may lead
to social withdrawal and even divorce. Yet, in other cases, the phy­
sician diagnoses and treats elevated blood sugar that requires in­
creased insulin, pain of uncertain origin that calls for diagnostic
testing, or major depressive disorder that needs treatment with an­
tidepressants. The healer-whether a neurosurgeon or a family doc­
tor, a chiropractor or the latest breed of psychotherapist-interprets
the health problem within a particular nomenclature and taxonomy,
a disease nosology, that creates a new diagnostic entity, an “it”-the
disease.
Disease is the problem from the practitioner’s perspective. In the
narrow biological terms of the biomedical model, this means that
disease is reconfigured only as an alteration in biological structure or
6
THE ILLNESS NARRATIVES
functioning. When chest pain can be reduced to a treatable acute
lobar pneumonia, this biological reductionism is an enormous suc­
cess. When chest pain is reduced to chronic coronary artery disease
for which calcium blockers and nitroglycerine are prescribed, while
the patient’s fear, the family’s frustration, the job conflict, the sex­
ual impotence, and the financial crisis go undiagnosed and unad­
dressed, it is a failure. In the broader biopsychosocial model now
making headway in primary care, disease is construed as the em­
bodiment of the symbolic network linking body, self, and society
(5″ee Engel 1977). In the biomedical model the disease is an occluded
coronary artery; in the biopsychosocial model it is a dynamic dialec­
tic between cardiovascular processes (hypertension or coronary ar­
tery insufficiency), psychological states (panic or demoralization),
and environmental situations (a midlife crisis, a failing marriage, the
death of a parent from the same disorder). In the practitioner’s act
of recasting illness as disease, something essential to the experience
of chronic illness is lost; it is not legitimated as a subject for clinical
concern, nor does it receive an intervention. Treatment assessed
solely through the rhetoric of improvement in disease processes
may confound the patient’s (and family’s) assessments of care in the
rhetoric of illness problems. Hence, at the heart of clinical care for
the chronically ill-those who cannot be cured but must continue
to live with illness-there is a potential (and, in many cases, actual)
source of conflict.
To complete the picture, I shall introduce a third term, sickness, and
define it as the understanding of a disorder in its generic sense across
a population in relation to macrosocial (economic, political, institu­
tional) forces. Thus, when we talk of the relationship of tuberculosis
to poverty and malnutrition that places certain populations at
higher risk for the disorder, we are invoking tuberculosis as sick­
ness; similarly, when we discuss the contribution of the tobacco
industry and their political supporters to the epidemiological bur­
den of lung cancer in North America, we are describing the sickness
cancer. Not just researchers but patients, families, and healers, too,
may extrapolate from illness to sickness, adding another wrinkle to
the experience of disorder, seeing it as a reflection of political op­
pression, economic deprivation, and other social sources of human
misery.
The Meaning of Symptoms and Disorders
7
Illnesses obviously vary in outcome. Some are brief, minimally
disruptive of our life activities. Some are more distressing; they take
longer to run their course. And the ones we are concerned with in
this book never entirely disappear. Moreover, these chronic ill­
nesses also vary greatly. Some lead to such devastating loss of
functioning that the patient is almost totally disabled. Some, while
less disabling, may yet eventually exhaust the family’s resources
and require institutionalization. And others ultimately terminate
the patient’s life. Imagine, as examples, the adolescent quadriplegic
whose very life requires assisted respiration and round-the-clock
help with all routine bodily functions and daily activities; or the
business executive whose asthma is known only to his wife and
children, who greatly, though secretly, limits his recreational, pa­
rental, and conjugal activities; or the young woman demoralized by
the disfiguring radical surgery that removed her sense of self-esteem
along with breast cancer and by the numbing realization that the
signs of metastasis are omens of her own demise. For the first case,
the illness problems arise from the total, inescapable life situation
organized around the constant threat to vital functions and the
necessity for continuous treatment; for the second, they stem from
inability to deal with the feeling of vulnerability and loss of control
as well as from the futile attempt to maintain two separate worlds­
one free of sickness (work), the other where sickness is legitimized
(home); whereas for the third, they center on the meaning of disfig­
urement and the menace of untimely death.
Chronic illnesses tend to oscillate betweel! periods of exacerbation, when symptoms worsen, to periods of quiescence, when dis­
-ability is less disruptive. By now a very substantial body of findings
indicates that psychological and social factors are often the determi­
nants of the swing toward amplification. The former include dis­
abling anxiety, giving up. The latter are deeply threatening life
event changes, impaired social support, and oppressive relation­
ships that contribute to a vicious cycle undermining psychophysio­
logical homeostasis (Katon et al. 1982; Kleinman 1986). Alterna­
tively, the swing toward damping (a kind of internal
health-promoting system that has received less research attention)
frequently seems to be associated with strengthened social sup­
ports, enhanced sense of self-efficacy, and rekindled aspiration.
8
THE ILLNESS NARRATIVES
Periods of alleviation also reveal attendant diminution in anxiety
and depression. There are rising feelings of mastery, often due to
acceptance of a paradigm of care that substitutes a pragmatic notion
of illness maintenance and disability reduction for the myth of cure.
Of course, swings from amplification to damping, and vice versa,
need not reflect psychosocial influence: often biological change is
responsible. As a result, there is uncertainty over the reason for
exacerbation or remission, which, regretably, encourages a corre­
sponding tendency to dismiss even the obvious social-psychological
push. of the swing. The upshot is conjoint (practitioner/patient,
family) denial that chronic disorder is so influe11.ced-a fateful com­
plicity that in my experience correlates with pessimism and passiv­
ity. Not surprisingly, the effect is to worsen outcome.
The Meanings of Illness
Illness has meaning, as the cases I have mentioned suggest, in sev­
eral distinctive senses. Each type of meaning is worth examining.
From an anthropological perspective and also a clinical one, illness
is polysemic or multivocal; illness experiences and events usually
radiate (or conceal) more than one meaning. Some meanings remain
more potential than actual. Others become effective only over the
long course of a chronic disorder. Yet others change as changes
occur in situations and relations. As in so many areas of life, their
very ambiguity often supplies illness meanings with relevance,
inasmuch as they can be applied now this way, now that way to the
problem at hand. Chronic illness is more than the sum of the many
particular events that occur in an illness career; it is a reciprocal
relationship between particular instance and chronic course. The
trajectory of chronic illness assimilates to a life course, contributing
so intimately to the development of a particular life that illness
becomes inseparable from life history. Continuities as well as trans­
formations, then, lead to the appreciation of the meanings of illness.
The appreciation of meanings is bound within a relationship: it
belongs to the sick person’s spouse, child, friend, or care giver, or
The Meaning of Symptoms and Disorders
9
to the patient himself. For this reason it is usually as much hedged
in with ambiguities as are those relationships themselves. But in the
long, oscillating course of chronic disorder, the sick, their relatives,
and those who treat them become aware that the meanings com­
municated by illness can amplify or dampen symptoms, exaggerate
or lessen disability, impede or facilitate treatment. For reasons I will
r:eview later, however, these understandings often remain unexam­
ined, silent emblems of a covert reality that is usually dealt with
either indirectly or not at all. Powerful emotions attach to these
meanings, as do powerful interests.
Social reality is so organized that we do not routinely inquire into
the meanings of illness any more than we regularly analyze the
structure of our social world. Indeed, the everyday priority structure
of medical training and of health care delivery, with its radically
materialist pursuit of the biological mechanism of disease, precludes
such inquiry. It turns the gaze of the clinician, along with the atten­
tion of patients and families, away from decoding the salient mean­
ings of illness for them, which interferes with recognition of dis­
turbing but potentially treatable problems in their life world. The
biomedical system replaces this allegedly “soft,” therefore de­
valued, psychosocial concern with meanings with the scientifically
“hard,” therefore overvalued, technical quest for the control of
symptoms. This pernicious value transformation is a serious failing
of modern medicine: it disables the healer and disempowers the
chronically ill (see chapter 16). Biomedicine must be indicted of this
failure in order to provoke serious interest in reform, �ecause a
powerful therapeutic alternative is at hand.
There is evidence to indicate that through examining the particu­
lar significances of a person’s illness it is possible to break the
vicious cycles that amplify distress. The interpretation of illness
meanings can also contribute to the provision of more effective care.
Through those interpretations the frustrating consequences of dis­
ability can be reduced. This key clinical task may even liberate
sufferers and practitioners from the oppressive iron cage imposed by
a too intensely morbid preoccupation with painful bodily processes
and a too technically narrow and therefore dehumanizing vision of
treatment, respectively. In chapter 15, I will set out a practical clini­
cal method that practitioners can (and should) apply to provide
10
THE ILLNESS NARRATIVES
more effective and humane care of chronically sick persons. This
alternative therapeutic approach originates in the reconceptualiza­
tion of medical care as (1) empathic witnessing of the existential
experience of suffering and (2) practical coping with the major psy­
chosocial crises that constitute the menacing chronicity of that ex­
perience. The work of the practitioner includes the sensitive solici­
tation of the patient’s and the family’s stories of the illness, the
assembling of a mini-ethnography of the changing contexts of chro­
nicity, informed negotiation with alternative lay perspectives on
care,.,and what amounts to a brief medical psychotherapy for the
multiple, ongoing threats and losses that make chronic illness so
profoundly disruptive.
Not the least of the reasons for studying illness meanings, there­
fore, is that such an investigation can help the patient, the family,
and also the practitioner: certainly not every time, perhaps not even
routinely, but often enough to make a significant difference.
Symptom as Meaning
The first kind of illness meaning that we shall consider, appropri­
ately enough, is the surface denotation of symptom qua symptom.
This is the ostensive, conventional signification of the symptom (for
example, back pain, palpitations, or wheezing) as disability or dis­
tress. There is a tendency to regard such self-evident significance as
“natural.” But what is natural depends on shared understandings in
particular cultures and not infrequently diverges among different
social groups. The meanings of symptoms are standardized “truths”
in a local cultural system, inasmuch as the groups’ categories are
projected onto the world, then called natural because they are found
there. That is to say, we take for granted local forms of common­
sense knowledge-a lump in the breast could be cancer, when over­
heated be cautious of drinking something very cold, suntanned skin
is a sign of health, to be thin is better than to be fat, a firm stool
once a day is normal-and these contribute to our shared apprecia­
tion of what sickness is and what is meant when a person expresses
The Meaning of Symptoms and Disorders
11
the sickness experience through established patterns of gestures,
facial expressions, and sounds or words.
As a result, when we talk of pain, for example, we are understood
by those around us. Yet even surface significances can be fairly
subtle. In each culture and historical period there are different ways
to talk about, say, headaches. And these differences make a differ­
ence in the way the members of the sick person’s circle respond to
him or her. Think of the many ways to complain of headache in
North American society: “My head hurts,” “My head really hurts,”
“My head is pounding,” “I’m having a migraine,” “It’s only a ten­
sion headache,” “I feel a fullness and heavy feeling in my temples,”
“It feels like a ring of pain is constricting my forehead,” “My
sinuses ache,” “My scalp is tingling,” “When I move my head I feel
dizzy, as if a veil were passing before my eyes.” Each expression
shades and colors the bald term “headache.” In the lifetime course
of chronic headaches, key words take on special significance to the
sufferer and family that no eavesdropper could interpret. We differ
as individuals in how effective we are in the use of these conven­
tional illness idioms and special terms. Some are more skillful in the
rhetorical deployment of these potentially powerful words to influ­
ence the behavior of others in the desire to receive support, to keep
others at a distance, to obtain time alone, to convey anger, to conceal
shame, and so forth.
Implicit in the first-level meaning of symptoms are accepte
�
forms of knowledge about the body, the self, and their relationship
to each other and to the more intimate aspects of our life worlds
For members of Western societies the body is a discrete entity, a
thing, an “it,” machinelike and objective, separate from thought and
emotion. For members of many non-Western societies, the body is
an open system linking social relations to the self, a vital balance
b�.tween interrelated elements in a holistic cosmos. Emotion and
cognition are integrated into bodily processes. The body-self is not
a secularized private domain of the individual person but an organic
part of a sacred, sociocentric world, a communication system in­
volving exchanges with others (including the divine).
For example, among traditionally oriented Chinese, the body is
regarded as a microcosm in symbolic resonance with the social and
even planetary macrocosm (Porkert 1974). The body’s qi (vital en-
12
THE ILLNESS NARRATIVES
ergy) is thought to be in harmony with that flowing in the environ­
ment. Yin/yang constituents of the body-self are in complementary
opposition and also are in interaction with yin/yang constituents of
the group and nature. Emotion correlates intimately with bodily
constituents, which in turn correlate closely with the weather, the
time, the physical setting, and the sociopolitical order. Conceptions
of illness are based on this integrated, dialectical vision.
In India the body-self is held to be permeable to substances and
symbols in social interactions (Daniel 1984). Health is a balance
.. among the body’s humors and the constituents of the outer world,
mediated by diet and a hierarchy of social relations tightly orga­
nized around a systematic categorization of the world in terms of
purity and pollution. A child is polluted by the touch of a men­
struating mother because menstrual blood can enter the porous
body (Shweder 1985), just as food received from someone in a lower
caste gets incorporated into the body and pollutes it from within.
The body is also permeable to supernatural and mystical forces.
Among the Navaho, the body is in perfect aesthetic and moral
harmony with the physical landscape of the Navaho world (Sand­
ner 1979; Witherspoon 1975). Body symbolizes landscape, and
landscape body. A similar idea is found among the Chinese (Un­
schuld 1985) and many other societies. In these cultures bodily
complaints are also moral problems: they are icons of disharmonies
in social relationships and in the cultural ethos. Reading the Hippo­
cratic medical texts suggests that, although some of the conceptions
are quite different, a similarly integrative, dialectical view of body,
self, and world was found in ancient Western society.
Meaning of a social kind is stamped into bodily processes and
experiences, sometimes literally so, as, for example, when ritual
circumcision and other forms of mutilation (subincision, tatooing,
clitoridectomy, amputation of finger joints, scarification) mark life
transitions and group and personal identity. Among Australian
aboriginals a person’s totem is embroidered into the skin through
ritual scarification; the person receives a skin name that identifies
his social group and personal status (Warner 1958; Munn 1973).
Social experience is embodied in the way we feel and experience our
bodily states and appear to others (Turner 1985). The tightly cor­
seted female body in an earlier era in Europe constituted as much
The Meaning of Symptoms and Disorders
13
as expressed a particular vision of women and their role in society.
The association in many societies of femaleness with the left side
of the body-which also frequently symbolizes pollution, darkness,
dampness, sinister motives, and a host of other negative oppositions
to the male (right) side of the body-informs bodily experience as
much as social categories with the moral meaning of gender (Need­
ham 1973). The great concern in North American culture with un­
blemished skin surface, deodorized, youthful bodies, sexualized
body shapes and gestures is part of a diffused capitalist system of
commercialized symbolic meanings, which, like all cultural systems,
orients the person to body and self experiences and to the priorities
and expectations of the group. Indeed, through these embodied
values social control is internalized and political ideology material­
izes as corporeal feelings and physiological needs. To understand
how symptoms and illnesses have meaning, therefore, we first must
understand normative conceptions of the body in relation to the self
and world. These integral aspects of local social systems inform how
we feel, how we perceive mundane bodily processes, and how we
interpret those feelings and processes.
We do not discover our bodies and inner worlds de novo. All
humans learn methods to monitor bodily processes and rhetorical
idioms (verbal and nonverbal) to communicate bodily states, in­
cluding states of illness. There are distinctive styles of eating, wash­
ing, laughing, crying, and performing routine bodily functions
(spitting, coughing, urinating, defecating, menstruating, and so
forth). And these styles of normal activities influence illness idioms
(Nichter 1982). We learn how to identify and react to pain, how to
label and communicate dysfunction. The idioms we learn are often
the same channels used to communicate troubles of any kind. Chest
discomfort may signal anxiety or angina, pneumonia or bereave­
ment. Tension headaches may express a number of states: from
exhaustion, chronic inflammation of the cervical spine, or the dis­
tress of an acute upper respiratory infection or of worsening diabe­
tes to the misery that results from job loss, an oppressive work
situation, or a systematically demoralizing marital relationship. Not
infrequently, a bodily idiom will express several of these forms of
distress simultaneously. Where a physiological stress reaction or a
chronic medical disease provide the particular biological substrate,
—-
14
THE ILLNESS NARRATIVES
there is a specific channel of established complaints (including
weakness, shortness of breath, chest discomfort, and abdominal
pain) that can be amplified to express distress of various kinds.
Hence, at the very core of complaints is a tight integration between
physiological, psychological, and social meanings (Kleinman 1986).
Illness idioms crystallize out of the dynamic dialectic between
bodily processes and cultural categories, between experience and
meaning. Among New Guinea natives in the Sepik region, illness is
indicated by the sick person’s dramatic withdrawal (Lewis 1975). He
�hows the intensity of the felt experience by covering the body with
ashes and dirt, refusing food, and remaining isolated. In some cul­
tures illness idioms may be more gregarious and mundane, and in
others they may be embodied as stoical silence. In some communi­
ties in India, for example, illness is expressed in the special tropes
of that society’s core hierarchical relationship between purity and
pollution, which determines to whom one shows symptoms and
from whom one accepts food and medicine. For the traditional
Brahmin mother who is menstruating, the fear of polluting her son,
even when he is ill, may prevent her from touching him and cause
her to warn him not to come too near (Shweder 1985). In India as
well as many other societies, illness behavior and care are demon­
strated in the pattern of food sharing and diet (Nichter 1982). Diet
is adjusted to right putative humoral imbalances. Special foods and
indigenous medicines may be shared among individuals whose kin­
ship or friendship ties bring them together into a lay therapy man­
agement team responsible for the patient’s treatment (Janzen 1978).
In small-scale, preliterate societies-for example, the Inuit of Alaska
and the Kaluli of the New Guinea highlands-illness is expressed
in the system of balanced reciprocity among members of the group
that is the central structural principle of each of these societies
(Briggs 1970; Schieffelin 1985). This system defines who shall do
what for whom in return for who has done (or should have done)
what for whom in order that in the future who will do what for
whom.
In North American society we, too, possess these conventionalized understandings of the body, these customary configurations of
self and symptoms. But given the marked pluralism of North
American life styles; ethnic and religious backgrounds; and educa-
The Meaning of Symptoms and Disorders
15
tional, occupational, and economic statuses, we must distinguish
between popular cultural meanings that are shared and those that
are restricted to particular subgroups. As a result, it is more sensible
to speak of local systems of knowledge and relationships that in­
form how we regard symptoms; these may differ substantially from
each other. Within these local systems shared meanings will be
negotiated among individuals of unequal power who attempt to
persuade others of the intensity of their distress and of the need for
access to more resources. Members of such local systems may seek
to deny the implications of an obvious abnormality, or they may try
to enlist significant others in the quest for care. Obviously, in­
dividuals differ in their rhetorical skills in deploying idioms of
distress (Beeman 1985).
Lay understandings of illness influence verbal as well as nonver­
bal communication. There may well be enough universality in facial
expressions, body movements, and vocalizations of distress for
members of other communities to know that we are experiencing
some kind of trouble (Ekman 1980). But there are subtleties as well
that indicate our past experiences, chief current concerns, and prac­
tical ways of coping with the problem. These particularities are so
much a part of local assumptions that they are opaque for those to
whom our shared life ways are foreign. Moreover, these distinctive
idioms feed back to influence the experience of distress (Good 1977;
Kleinman and Kleinman 1985; Rosaldo 1980).
I hear you say your headache is a migraine, or a tension headache
owing to too much “stress,” or that it is “beastly,” “awful,”
“pounding,” “throbbing,” “boring,” “aching,” “exploding,”
“blinding,” “depressing,” “killing,” and I interpret something of
that experience and how you feel and want me to feel about it. (You
also interpret your own language of complaining and my response
to you, which will affect your symptoms.) It is a testament to the
subtlety of culture that we share such a wide array of understand­
ings of surface meanings of symptom terms. (Nigerian psychiatric
patients, for example, frequently complain of a feeling like ants are
crawling in their heads, a complaint that is specific to their culture
[Ebigbo 1982].) I may no longer explicitly understand the Galenic
system of hot and cold bodily states and the humoral balance and
imbalance it connotes in Western folk culture, but I get your point
16
THE ILLNESS NARRATIVES
that you have a”cold” and therefore want something”hot” to drink
and feel the need to dress warmly to protect your “cold” from “the
cold.” Our understanding is based on a grand cultural convention
that would make “feed a cold, starve a fever” incomprehensible to
someone without this shared local knowledge (Helman 1978).
Yet there is obviously also great uncertainty at this outer level of
signification. I am not entirely sure what you mean when you say
your “head is splitting,” because I feel I do not know you well
enough to make full sense of your experience. Are you generally
stoical, hysterical, hypochondriacal, manipulative? Understanding
who you are influences how I interpret your complaints. The rela- ‘
tionship we have will inform how I respond to your complaint of
headache. That relationship includes a history of how I have re­
sponded to you in the past (and you to me), along with our mutual
understanding of the current situation; in the case of chronic illness,
it includes as well the pattern of response and situation that has
already been established over hundreds of complaints. My interpre­
tation of your communication of distress is organized by the pattern
of our daily interactions in times of sickness. Indeed, the language
of your complaints has become a part of the language of our rela­
tionship. Hence, even the superficial significance of symptoms qua
symptoms is embedded in the meanings and relationships that orga­
nize our day-to-day world, including how in interaction we recreate
our selves. This makes of even superficial symptoms a rich meta­
phoric system available for many kinds of communication.
A corollary to the meaning of symptoms is the semiotics of diag­
nosis. For the practitioner, the patient’s complaints (symptoms of
illness) must be translated into the signs of disease. (For example, the
patient’s chest pain becomes angina-a sign of coronary artery dis­
ease-for the physician.) Diagnosis is a thoroughly semiotic activ­
ity: an analysis of one symbol system followed by its translation
into another. Complaints are also interpreted as syndromes-clus­
ters of symptoms which run together over time-that indicate
through their relationship a discrete disorder. Clinicians sleuth for
pathognomonic signs-the observable, telltale clues to secret pa­
thology-that establish a specific disease. This interpretive bias to
clinical diagnosis means that the patient-physician interaction is
organized as an interrogation (Mishler 1985). What is important is
The Meaning of Symptoms and Disorders
17
not what the patient thinks but what he or she says. Since 80
percent of diagnoses in primary care result from the history alone,
the anamnesis (the account the physician assembles from the pa­
tient’s story) is crucial (see Hampton et al. 1975). That tale of com­
plaints becomes the text that is to be decoded by the practitioner
cum diagnostician. Practitioners, however, are not trained to be
self-reflective interpreters of distinctive systems of meaning. They
are turned out of medical schools as naive realists, like Dashiell
Hammett’s Sam Spade, who are led to believe that symptoms are
clues to disease, evidence of a “natural” process, a physical entity
to be discovered or uncovered. They are rarely taught that biological
processes are known only through socially constructed categories
that constrain experience as much as does disordered physiology;
this is a way of thinking that fits better with the secure wisdom of
physical science than with the nervous skepticism of the medical
profession.
The upshot is that practitioners, trained to think of”real” disease
entities, with natural histories and precise outcomes, find chronic
illness messy and threatening. They have been taught to regard with
suspicion patients’ illness narratives and causal beliefs. The form of
those narratives and explanations may indicate a morbid process;
the content may lead them astray. The way of the specialist diag­
nostician, which is not to credit the patient’s subjective account
until it can be quantified and therefore rendered more “objective,”
can make a shambles of the care of the chronically ill. Predictably,
the chronically ill become problem patients in car(, and they recip­
rocally experience their care as a problem in the health care system.
Illness experience is not legitimated by the biomedical specialist, for
whom it obscures the traces of morbid physiological change; yet for
the care giver of the chronically ill who would be an effective healer,
it is the very stuff of care,”a symbol that stands for itself” (Wagner
1986). Legitimating the patient’s illness experience-authorizing
that experience, auditing it empathically-is a key task in the care
of the chronically ill, but one that is particularly difficult to do with
the regularity and consistency and sheer perseverance that chronic­
ity necessitates. The interpretation of symptoms in the longitudinal
course of illness is the interpretation of a changing system of mean­
ings which are embodied in lived experience and which can be
18
THE ILLNESS NARRATIVES
understood through the acquisition of what amounts to an ethno­
graphic appreciation of their context of relationships, the nature of
their referents, and the history of how they are experienced.
Cultural Significance as Meaning
Illness has meaning in a second sense, insofar as particular symp­
toms and disorders are marked with cultural salience in different
epochs and societies. These special symptoms and illness categories
bring particularly powerful cultural significance with them, so to
speak, often of a stigmatizing kind. Few North Americans have ever
seen or heard of a case of leprosy, yet so fearsome is the mythology
surrounding this category of disorder in the collective consciousness
of the West that equally few would be likely to react without
abhorrence or terrible fright if told that they or a close acquaintance
were suffering from leprosy. No wonder the horrific name of this
illness has been changed to the innocuous “Hansen’s disease.”
In the late Middle Ages, the Black Death (bubonic plague)
depopulated the European continent by an astounding three-fourths. In so doing, the Black Death became a symbol of evil and
terror. It came to signify several things: the wrath of God, man’s
fallen state of sin and suffering, and death as transcendence of the
immortal soul (Bynum 1985; Gottfried 1983). Whatever particular
religious meaning the Black Death had for a community was over­
whelmed by the immensely powerful practical meaning the term
held for the afflicted and their families. The application of this
illness label placed home and neighborhood under the isolation of
quarantine and made the inhabitants doomed outcasts who posed
the gravest dangers to society. That the word plague radiates hardly
any significance today is an illustration of the process of transfor­
mation of meaning that Foucault (1966)-using the example of
insanity in the West-showed can substantially change the nature
of the culturally salient mark certain illnesses impress on the
afflicted. The disappearance of plague epidemics must have con­
tributed powerfully to this transformation.
The Meaning of Symptoms and Disorders
19
In the Gilded Age of late nineteenth-century America, the vapor­
ous paralyses of hysteria, neurasthenic weakness, and neurotic
angst due to crises of personal confidence over career and family
responsibilities were specially salient disorders regarded as products
of the age. They spoke of a widespread middle-class malaise as­
sociated with the very rapid pace of social change that was trans­
forming a North American society anchored in eighteenth-century
ideals and rural or small town life styles into the twentieth-century
culture of industrial capitalism (Drinka 1984). There was great con­
cern with the effect of this massive societal transformation on in­
dividuals, usually bourgeois and upper-class men and women,
whose symptoms were viewed ambivalently as the price that mem­
bers of society had to pay for their world to become fully modern.
Let us take another example of culturally marked illness: witch­
craft. Accusations of witchcraft in the early New England Puritan
world congealed many of the core fears of the time, including
threats of deviance, egocentricity, antisocial behavior, and sexual­
ity. It represented an obsession with the control of jealousy and
envy, and with explaining the presence of misfortune and malefi­
cence in a world ruled by a stern but just God. In twentieth-century
tribal societies in Africa, witchcra� symbolizes .1 similar concern
with the sources of jealousy, envy, and misfortune, though here the
emphasis is on human rather than Satanic evil. In the African set­
ting, witchcraft also conveys fears regarding threats to procreativity
and village unity (Turner 1967; Janzen 1978). In both societies
witchcraft became a major explanatory model of malign