Kathy Charmaz. Handbook of Social Studies in Health and Medicine. Editor: Gary L Albrecht, Ray Fitzpatrick, Susan C Scrimshaw. Sage Publications, 2000.
Introduction
Social scientific research on experiencing chronic illness focuses directly on pivotal players in health care—people who are sick. Health researchers, practitioners, and policy makers may claim to represent patients’ concerns. However, they seldom obtain systematic ‘in-depth’ views of patients’ experience of health care, much less of what it means to live with continued illness. The research on experiencing chronic illness emphasizes how people come to view themselves as chronically ill, and how illness affects their lives. Hence, this literature provides a significant corrective to knowledge about health and illness: it delineates patients’ perspectives instead of practitioners’ views that dominate both the institution of medicine and social scientific research (Mishler 1994). Understanding patients’ perspectives brings fresh insights to three crucial levels of analysis: (1) the individual level of assumptions, attitudes, and actions toward health and illness, (2) the interactional level within and beyond health care, and (3) the institutional level of health policy and health-care reform.
Consistent with Peter Conrad (1987), I define illness as the person’s experience; disease constitutes a bodily disorder as agreed upon by physicians. Some people do not experience illness when they have a diagnosed disease. Other people experience illness before receiving a diagnosis or being believed to have a disease. A chronic illness can be episodic or endless; it may have long plateaus or continual progression. It is at once subjective and social; it includes experiencing inchoate emotions and bodily sensations as well as making such experiences meaningful and responding to imagined or actual social responses.
Chronic illness poses more social, interactional, and existential problems than acute illness because it lasts. However, preconceptions of acute illness permeate ideas about chronic illness and pervade institutionalized practices for handling it. Through analyzing the experience of chronic illness, we learn what chronically ill people’s actions mean, when and how they come into conflict with practitioners, and what it means to face loss and reconstruction of self. This field advances social studies of health and illness by accumulating facts about the empirical world and by building theoretical analyses from empirical data.
Experiencing chronic illness means much more than feeling physical distress, acknowledging symptoms, and needing care. It includes metaphor and meaning, moral judgments and ethical dilemmas, identity questions and reconstruction of self, daily struggles and persistent troubles. Experiencing serious illness challenges prior meanings, ways of living that have been taken for granted, and ways of knowing self. Life is now uncertain. The self has become vulnerable, and thus problematic. Its vulnerability derives, in part, from potential disapproval and devaluation, for continued illness has a profoundly moral cast. Moral meanings of illness arise through interactions in local worlds and specific lives (Das 1994; Kleinman 1994; Williams 1993). Whether, when, and how people might acknowledge and act upon illness is embedded in culture and context.
To understand the experience of chronic illness, we must study what ill people think, feel, and do in their natural settings. I begin by noting how the field emerged in response to structural analyses that did not account for patients’ actions. Then I describe how people experience becoming and being ill, and suggest how culture shapes meanings. Throughout this and subsequent sections, I synthesize major ideas from the literature. Diverse researchers have discovered remarkably similar themes: ambiguity and uncertainty, autonomy and control, stigma and shame, isolation and connection, and loss and reconstruction of self. How and when these themes are played out varies. Despite the consistent themes, this research reveals some surprising results, as I show in the sections on managing illness and stigma control. Next, I outline ways that people with chronic illness handle and reconstruct a now problematic self. Last, I conclude by suggesting how the preceding analysis affects future policy problems and prospects and can direct further research.
Emergence of the Subject
Social scientific studies of illness gained momentum almost 40 years ago. At that time, sociological ethnographers discovered that structural theories did not account for how people lived with and made sense of conditions such as tuberculosis (Roth 1963), poliomyelitis (Davis 1963), blindness (Scott 1968), visible disability (Goffman 1963), and dying (Glaser and Strauss 1965, 1968). The subject of the experience of illness emerged as ethnographers moved from the structural toward the subjective. This move initiated new inductive analyses reasoning from individual and interactional levels to institutional levels of analysis. These ethnographers responded to Talcott Parsons’ (1951) structural concept of the sick role which assumed recovery, passive patients, and active physicians who decided treatment on scientific criteria (Charmaz in press; Charmaz and Olesen 1997; Gerhardt 1989). The sick role temporarily exempted patients from usual adult responsibilities but obligated them to seek medical help and to comply with treatment. The sick role did not explain how people with chronic conditions managed their illnesses and their lives. As Roth (1963) discovered in the tuberculosis hospital, patients actively negotiated their roles, rather than passively following behavioral prescriptions. Being ill resembled a career with direction, goals, paths, and turning points.
Later works addressed chronically ill people’s everyday worlds. Chronic Illness and the Quality of Life (Strauss 1975; Strauss et al. 1984) spawned research on how people managed illness and regimen. Having Epilepsy (Schneider and Conrad 1983) advanced sociological understanding of stigma management and stigma potential. Ray Fitzpatrick et al. (1984) brought further attention to the field with The Experience of Illness, and Peter Conrad (1987) and others defined it in the collection, Research in the Sociology of Health Care: The Experience and Management of Chronic Illness (edited by Roth and Conrad). Increasingly, medical anthropologists address the experience of illness (Desjarlais 1992) and study their own societies (Kaufman 1992; Kleinman 1988; Lock and Dunk 1987; Plough 1986). The experience of illness has gained interest among psychologists (Mishler 1981; Radley 1988, 1991, 1993; Radley and Billig 1996; Smith, 1996). Furthermore, leading researchers in health and illness have also explicated interpretive methods, thus providing tools for studying experience (Coffey and Atkinson 1996; Glaser and Strauss 1967; Hammersley and Atkinson 1983; Strauss 1987; Strauss and Corbin 1990). A research literature that began with role structure and deviance moved on to patient career and negotiation, then to managing illness and stigma, followed by increased emphasis on self and identity. With each shift, the literature came closer to the experiencing subject.
Becoming and Being ill
Prior Assumptions about Health and Illness
Michael Bury (1988: 90) states, ‘[M]uch of the experience and meaning of illness is emergent in nature.’ True—within limits. However, everyone already has some notions of health and illness, although they differ among groups and societies. People with illnesses draw upon cultural meanings for metaphors to describe their bodily feelings, and from those feelings derive new meanings (Kirmayer 1988; Scheper-Hughes and Lock 1987). Bodily and illness metaphors consist of subtle descriptions and are applied as if they were concrete reality, rather than as a portrayal of this reality. Illness metaphors make inchoate experience comprehensible (Lock and Dunk 1987; Low 1994). Metaphors offer more than reductionist or comparative views; they illuminate, enliven, and evaluate experience (Radley 1993). Common Western metaphors of illness as ‘an odyssey,’ ‘a challenge,’ ‘a personal failure,’ ‘a destroyer,’ ‘an occupation,’ ‘the enemy,’ and ‘a battle’ shape beliefs (Charmaz 1991; Herzlich 1973; Williams 1981a, 1981b).
Beliefs about health and illness are ideological (see Calnan 1987; Crawford 1984; Fitzpatrick et al. 1984; Radley and Billig 1996). These beliefs provide individual and collective reasons for acting, justify prior actions, and call for future actions. Cultural variation in beliefs generally, and about illness specifically, gives rise to different ideologies about how to handle illness. Such ideologies bridge levels of individual beliefs and institutionalized practices. For example, Nancy E. Waxier (1981) argues that Ethiopians responded to having leprosy in consistent ways with the fatalism of the Ethiopian peasant. They often abstained from sex, left their families and homes, initiated divorces, and withdrew. Waxier states that situations making leprosy visible, its highly stigmatized status, and pervasive beliefs about its incurable nature led Ethiopians to adopt expected stigmatized identities voluntarily. In contrast, she finds that North Americans with leprosy fight back in almost a caricature of American values. They take action, organize, and educate others about the disease. Cultural meanings form the backdrop on which individuals develop their stance toward illness.
Medical practitioners’ beliefs about health and illness also confer ideological meanings upon patients, and moreover, control structuring their treatment. Whether or not practitioners define a particular physical state as an illness profoundly affects individual and collective life. First, reducing a social problem to an individual’s illness masks its social roots. For example, Nancy Scheper-Hughes (1992) contends that Brazilian institutionalized medicine has appropriated ñervos, a folk concept explaining relationships between mind, body, and social context. Ñervos results from nervous hunger of starving people. However, the medical establishment transforms it into a personal and psychological disorder requiring medications such as tranquilizers, vitamins, and sleeping pills. Scheper-Hughes states, ‘[H]unger is isolated and denied, and an individualized discourse on sickness comes to replace a more radical and socialized discourse on hunger’ (1992: 169). Second, if epidemiological distribution of symptoms alone indicates a collective illness, then medical rejection of these symptoms also negates this illness and keeps sufferers marginalized and deviant, as occurred for years with sick Gulf War veterans. Such sufferers lack legitimacy as bona fide patients. Third, they suffer personal, economic, and social consequences—identity losses, financial hardships, stigma, and isolation. To improve their circumstances, receive medical legitimacy, and obtain help, they must organize collectively and struggle to prove that this illness is real and that they themselves have it (Brown 1996; Dumit 1997).
Individual accounts of health and illness reflect identity and reality claims for specific audiences and purposes (Charmaz 1987, 1995; Radley and Billig 1996). Joyce Cornwall (1984) had to persuade working-class East London adults that participating in a study of health would not brand them as ‘ill.’ She observes that people give different public and private accounts of illness: public accounts are selective and partial. East Londoners talk with doctors about information, ideas, and experiences that they believe doctors will respect. Cornwall suggests that private accounts are fuller, more fluid, and factual. Some East Londoners who first described themselves as healthy later revealed a litany of chronic conditions. Mildred Blaxter and Elizabeth Patterson (1982) argue that working-class English women avoid talking about symptoms and troubles because they believed ‘thinking it so, makes it so.’ They reduced causation of and moral responsibility for illness to individuals (see also Calnan 1987; McGuire and Kantor 1987).
Accounts of health and illness draw upon cultural values and individual intentions in response to particular circumstances. People take for granted that their views reflect the true, objective reality and build ‘shoulds’ and Oughts’ into them. For example, Blaxter’s (1983) working-class women thought of illness as a ‘leveler,’ and as a natural consequence of age. To them, it affected rich and poor alike despite having experienced poverty and ill health in childhood themselves that precipitated lifelong health problems. Their view muted their social class disadvantage of having greater incidence of illness than middle- or upper-class people. Their view also shows how shared beliefs serve to keep understandings of illness within the individual level of analysis. These British studies point to the need for further research that compares health meanings and actions between social class groups and demonstrates differential institutional effects upon them.
Illness as Biographical Disruption Vs. Continuity
A chronic illness often disrupts a person’s life (Bury 1982), particularly so when it occurs during young or middle adulthood to working and middle-class people in affluent Western societies (see, for example, Brooks and Matson 1982; Bury 1982, 1988; Charmaz 1991; Herzlich and Pierret 1987; Robinson 1988; Schneider and Conrad 1983). Themes of disruption and loss of control permeate the Western literature on illness. Bury (1982, 1988) conducted two or more interviews with thirty working-class people with rheumatoid arthritis including twenty-five English women, two-thirds of whom were between 25 and 54 years old, and five men aged 45–64; most of them were young or middle-aged working adults. Locker (1983) interviewed twenty-four Londoners with arthritis twice, sixteen of whom range from 53 to 64 years old. Herzlich and Pierret (1987) illustrate their historical analysis of illness and French society with interview excerpts compiled for over 20 years. Corbin and Strauss (1988) analyzed published autobiographies and interviews of sixty California couples; at least one partner had a chronic illness or disability. My evolving study (Charmaz 1991, 1995) included informal interviews with caregivers, written personal accounts, and 140 in-depth interviews of middle- and working-class adults (two-thirds middle-aged and older; two-thirds women); sixteen respondents were followed from 5 years to more than a decade. I draw upon these studies in the subsequent discussions.
Chronically ill people lose their previously taken-for-granted continuity of life. Becoming ill poses three major problems to them: (1) making sense of bewildering symptoms, (2) reconstructing order, and (3) maintaining control over life (see also, Kirmayer 1992; Kleinman 1988). Making sense of symptoms spurs a diagnostic quest to define illness. Reconstructing order leads to efforts to manage illness and regimen, which I discuss in the next section. Maintaining control over life derives from concrete daily actions and regaining continuity and coherence of self and one’s world. Experiencing bewilderment may be a luxury of societies in which people expect good health throughout long lives. Bewilderment spreads through families. It can lead to feeling overwhelmed once family members see what illness and care involves (Bluebond-Langner 1996; Lillrank 1998; Scambler and Hopkins 1988). Age may not ease a patient’s bewilderment despite doctors’ beliefs to the contrary, as Ruth Pinder (1992) reports of English practitioners and patients with Parkinson’s Disease. Common illnesses such as a heart attack can also come as a shock and result in bewilderment (Cowie 1976; Johnson 1991; Speedling 1982). One of Bill Cowie’s Scottish interviewees described his heart attack as ‘quite out of the blue … It was completely unexpected’ (Cowie 1976: 89). Bewilderment may shade into feeling betrayed by one’s body, god, or physician (Charmaz 1995). Bewilderment dissolves when ill people have sustained contact with similar others and compare themselves accurately with them. Myra Bluebond-Langner (1978) shattered the assumption that small children have no concept of death. She demonstrated that little children with cancer learned of their imminent deaths by comparing themselves with their dying peers’ illness and treatment.
Through understanding how people experience illness, problems at the interactional level become comprehensible. Beliefs and actions may become contested as practitioners and patients attempt to make sense of emerging symptoms. The path between discomfort and diagnosis is neither always smooth, nor direct. Definitions of illness may be rejected, challenged, negotiated, and redefined. Defining illness and being diagnosed occurs in several ways: (1) having a crisis, (2) comparing self with sick people, (3) redefining feelings or behavior as symptoms, and (4) receiving test findings or medical pronouncements. A crisis may not be initially identified as such. People normalize their symptoms for as long as possible (Johnson 1991; Stewart and Sullivan 1982). Seeking a diagnosis can turn into an onerous task (Corbin and Strauss 1988; Pinder 1992). If a prospective patient does not fit practitioners’ images of someone who contracts a particular disease, then they may discount or minimize her symptoms. Age, appearance, sex, and race can all affect such judgments. For example, doctors discounted a woman’s chest pains because they saw her as too young (51), healthy, and of the wrong sex for having heart disease. They told her, ‘You don’t look like there could be anything wrong’ (Charmaz 1995: 666). These physicians’ saw authentic illness as premature and unlikely. Perhaps more often it seems premature to the patient (Pinder 1992; Singer 1974; Weitz 1991). Shock results when the illness is unknown and symptoms are silent, nonexistent, or seemingly minor. Defining illness often results from other people’s insistence that the person seek help. They observe changes or note a bizarre symptom unknown to the individual. For example, a little boy alarmed his mother when he complained that he could not mimic her contorted smile. When symptoms have long been intrusive, sufferers may welcome a serious diagnosis, especially if they had questioned their own veracity or had felt discredited.
Having an unmistakable health crisis imposes definitions of illness. What makes an episode a crisis, when it occurs, and how it is explained depends upon location, situation, and resources. Crises throw people out of ordinary life—order becomes disorder, the controllable becomes uncontrollable, the understandable becomes unfathomable (Charmaz 1991; Pinder 1992; Scarry 1985). The surge of extraordinary events usurps an ordinary flow. Life is out of control. When people already live in uncontrollable worlds filled with deprivation, disease, and crime, crises are constant and life is fragile (Scheper-Hughes 1992). Adding the wrenching incoherence of sickness and pain to lives already numbed by crises results in minimizing misery, individually and collectively.
During a crisis, the distance between symptom and calamity shrinks, if noted at all. Crises are filled with uncertainty; they swoop the ill person and helpers into the present (Charmaz 1991; Davis 1963). Ellen Idler observes, The experience of pain roots one in the present … Sickness creates and measures its own time’ (Idler 1979: 727). The exigencies of the moment consume everyone, although they may have nothing to do but wait—and wait. Crises force the individual into the sick role in societies with access to medical care (Parsons 1951). Events topple upon each other so quickly that redefining self as critically ill may not occur (Charmaz 1991; Speedling 1982). Redefining self as ‘chronically’ ill is even more unlikely. Because a crisis turns life upside down, people can define it as an extraordinary episode while not necessarily realizing its lasting consequences (Charmaz 1991; Davis 1963). Later, a crisis can be long talked about, but kept contained in time and place. The teller can claim a heroic self who emerged victorious despite poor odds. A good story of a past crisis does not pollute the present—at least for a while or until audiences are exhausted, both in interest and in number. Such stories must be carefully constructed lest negative meanings from the past seep into the present. Both practitioners and patients may concentrate on past crises and thereby avoid dealing with present uncertainty, impaired bodies, and changed lives. However, when practitioners believe patients should face reality (i.e., disability), they may find patients unwilling to do so if they continue to define earlier crises as acute episodes.
Health crises reinforce viewing chronic illness as series of acute episodes, if some semblance of normal life follows each crisis (Charmaz 1994; Radley and Billig 1996). For example, a heart attack or a flare-up of myasthenia gravis may be defined as temporary crises. Other experiences and certain conditions do not lead to such definitions. If, for example, a person suffers a severe heart attack with irreversible disabilities, this crisis marks a changed life. Sharon Kaufman (1992) asked elders who had had strokes if they had recovered and if their lives were back to normal. She found that they invariably answered ‘no’ to both questions, even when they did not have visible disabilities. These people saw themselves as physically, emotionally, or cognitively changed.
In contrast to serial crises, creeping symptoms disrupt life less although they may cause logistical and social psychological problems. Finding out that something is wrong and what it is can become a long, tedious process (Pinder 1992; Stewart and Sullivan 1982). Ill people and their families usually adapt to early symptoms before they piece them together as meaningful signs of illness. How gradual symptoms are defined depends on cultural, familial, and situational contexts. To a degree, diffuse creeping symptoms such as fatigue, shortness of breath, and difficulty in concentrating can be confused with aging (see also Bury 1988). Yet, such symptoms are more likely to be dismissed in certain milieux, but not others. Stewart and Sullivan tell the tale of one man who was later diagnosed with multiple sclerosis. He had dismissed fleeting numbness in his ankles, clumsiness, and double vision because he saw them as ‘a side effect of my work. I did precision work in cramped spaces in airplanes and it had always been hard on my legs and eyes. All the guys who did this complained of the same types of things’ (1982: 1399). If coworkers have similar sensations, who would not dismiss early symptoms?
Lay beliefs about health and illness may compete with practitioners’ views of a person’s presenting symptoms. If so, people may experience symptoms long before seeking conventional care. Mathews et al. (1997) found that African-American women in North Carolina viewed lumps in their breasts as resulting from ‘bad blood’ trying to get out of the body. Impurities from bad blood are believed to cause a variety of diseases in African and Afro-Caribbean cultures. One woman said:
If you have a lump and it’s not bothering you, leave it alone. You don’t want to get it started. That’s why I don’t hold with this idea of poking around to look for lumps. Why look for trouble? When that doctor wanted me to have the X-ray on my breast, I told him he was crazy. There’s no telling what those X-rays might stir up. (Mathews et al. 1997: 53)
If practitioners or social scientists separate these women’s experience from their indigenous understandings of health and illness, their delays and responses to treatment look like fatalism. However, Balshem (1991) and Mathews et al. (1997) point out that such attributions make fatalism itself a disease and discount stories through which patients comprehend their situations.
Common sense interpretations such as stress, depression, or weight changes may provide reasons for diffuse symptoms for both ill people and their practitioners in the early stages of some disease processes. Even considerable public discourse about the disease may not offer sufficient clues to those who have early symptoms. For example, when Rose Weitz’s (1991) interviewees did not know of their HIV infection, they invoked other plausible explanations for their symptoms—the Arizona heat caused night sweats and exhaustion; drug use or withdrawal resulted in weight loss, sweating, and diarrhea. These examples indicate that laypersons (and sometimes practitioners) can explain distress in other ways than a disease process. The current rhetoric of stress combined with busy lives and over-burdened jobs encourage people to make sense of their bodily sensations in alternative ways. However, taken out of the context, it might seem that the person denies real and serious symptoms.
Chronically ill people seldom want to be invalids; they wish to be accepted as valid adults (Charmaz 1987; Locker 1983). Their self-doubts rise if other people imply that they wanted to get sick or harbor questionable motives for seeking care and claiming special needs: ‘Are my symptoms real or all in my head?’ (Bury 1988; Charmaz 1991). Their symptoms may be intermittent or gradually increase until they interfere with everyday life (Bury 1988; Charmaz 1991; Locker 1983; Robinson 1993). The person cannot meet obligations, keep up with coworkers, maintain their households, or handle daily child care. Esoteric and invisible illnesses often prove elusive. Then, symptoms may become pronounced before they are recognized as such. Yet, ill people do delay seeking help if it poses risk of further loss. Social purposes rather than health needs take priority. People delay seeking help when they risk losing valued roles, responsibilities, and images of self. For example, a parent who resists relinquishing child-care duties may defer seeking help.
Recognition of diminished function or inexplicable symptoms spurs a diagnostic search (Dingwall 1976; Kotarba 1983; Robinson 1971; Stewart and Sullivan 1982; Telles and Pollak 1981). Stewart and Sullivan (1982) found that patients with multiple sclerosis began their diagnostic search when they could no longer explain their symptoms. However, physicians and relatives typically did not affirm their symptoms as real until after diagnosis more than 2 years later. During this time, ill people live in ‘diagnostic limbo’ (Corbin and Strauss 1988) suspended in time. These patients often seek multiple physicians when their complaints are discounted and dismissed (see also Baszanger 1989; Kotarba 1983; Robinson 1988, 1990). Discounting and dismissal also may occur after a problem has been defined as chronic but practitioners cannot ameliorate it, such as chronic back pain (Baszanger 1989 1998; Kotarba 1983).
Diagnostic shock follows an announcement of serious illness that shows up in testing—cancer, multiple sclerosis, and diabetes—before patients either note symptoms or grant them any significance. From the patient’s viewpoint, diagnostic shock occurs without warning, such as during a routine physical. Part of the shock means having reality disconfirmed. Not only are the person’s suppositions about his body shaken, but also to the extent that a diagnosis has foreboding meaning, prior reality is disconfirmed as this diagnosis is confirmed. Subsequently, prior identities are also disconfirmed. When people do not anticipate bad news, have little knowledge and few symptoms of their confirmed diagnosis, the disparity between diagnosis and self-concept is greatest. Then the person needs time, bodily experiences, social encounters, and self-definitions to redefine self and identity. Meanwhile, the diagnosis confirms being catapulted into a patient role (Mairs 1989; Sourkes 1982). A new label, a new identity has been applied and given. Yet even the most dreaded and seemingly known diseases such as AIDS, leprosy, and cancer require learning what being ill means.
Managing Illness
Learning What Illness Means
In order to be ill, someone has to feel sick. Merely being informed that one has a disease seldom suffices. Until a person defines changes in bodily feeling or function, she may postpone dealing with a diagnosis, even a serious one, and subsequently ignore medical advice and regimen. Illness does not seem real. Then the person may claim that the diagnosis is wrong, secondary, or inconsequential, and relations with practitioners suffer accordingly.
People learn what illness is through their experience of it (Charmaz 1991; Davis 1963). Lessons in chronicity come in small everyday experiences such as difficulty in opening a can, bending over to pick up a newspaper, folding bedsheets, and weeding the garden. Comparisons with past effortless performance can be shocking. Such jolts later become measures explicitly sought and then assessed. A man with heart disease who used to stride across a golf course now shuffles half way across the company parking lot. A present reality jolt can be reinvoked as a future measure. Measures include time—the person can only get through part of the work day, rest requirements become apparent to coworkers, fulfilling work standards takes hours or days longer. Indicators become measures when they are impossible to gloss over or to have someone else camouflage. A person may invoke measures, or other people may supply them. These measures can multiply and form a general standard against which to judge self.
Historical, cultural, social, and situational contexts influence meanings of illness. Waxier (1981) argues that in every society, the sick person learns to take a role that society expects. Waxler’s work on leprosy presages moral meanings of AIDS. She shows how moral meanings of illness are pinned on certain groups, but not others. After 1850 in Hawaii, leprosy became associated with Chinese immigrants, although missionaries had recognized it earlier and health records indicated that the Chinese were not an important source of the disease.
Normalizing Illness and Regimen
Normalizing illness and regimen means making them routine, and treating whatever changes and improvisations are created as ordinary. For some people, normalizing means letting past plans and projects go and scaling life down. For others, it means struggling with illness and regimen to make life manageable so a valued future is possible. In both cases, normalizing means adapting to the situation at hand. It also means proceeding with activities ‘as i/normal’ (Wiener 1984: 91). Normalizing means finding ways to minimize the impact of illness, disability, and regimen on daily life, including their visibility (Drummond and Mason 1990; Robinson 1993). It constitutes an attempt to contain illness to personal experience and not intrude upon interaction. Thus, chronically ill people cover up limitations and keep up normal appearances and activities (Wiener 1984). They normalize a certain amount of discomfort when they can still function in ordinary ways. Such strategies become hazardous if a person over-extends his capacities and perhaps harms an already compromised body.
However, when ill people normalize symptom control and regimen, they may increase their capacities and maintain their health. This kind of normalizing means making new routines the norm and the normal. What earlier seemed bizarre becomes customary and comfortable. Hence, a man with balance problems pulls on his undershorts and pants while lying in bed. Many people jettison activities as their stamina decreases and illness increases. Women often dispense with hose, skirts, and heels; occasionally they dispense with underwear when it takes too much energy and too long to don. As innovations and changes become routine and accepted, they feel normal and allow the ill person to view the self as normal and the way of living now as natural (Kelleher 1988).
Normalizing reduces disruption. It softens the impact of frailty and disability. Through normalizing, ill people take their way of being and the changes they have endured for granted. As their lives become more restricted, their world shrivels, frame of reference shrinks, and self contracts. As Oliver Sacks said of his convalescence for a broken leg:
I had no sense, no realization of how contracted I was, how insensibly I had become contracted to the locus of my sickbed and sickroom—contracted in the most literal physiological terms, but contracted too, in imagination and feeling … It was an una voidable, natural shrinking down of existence, made bearable and untreatable because not realizable—not directly realizable. How could one know that one had shrunk, if one’s frame of reference had itself shrunk? (Sacks 1984: 156)
Illness Management Strategies
Chronically ill people learn ways to handle their physical symptoms through various strategies ranging from withdrawal to innovation (Charmaz 1991; Mitteness 1987b; Pinder 1988; Reif 1975; Schneider and Conrad 1983; Strauss et al. 1984). Strategies for managing illness also require strategies for effective negotiations. People in lengthy marriages make managing illness a coupled affair (see Corbin and Strauss 1984, 1988; Johnson 1985; Peyrot et al. 1988; Radley 1988). Visible disability drives other adult relatives away (Albrecht 1992). What people need to manage depends on their illness, its progression, and its meaning to them, as well as their situation and their responsibilities. One person juggles and paces work to get through the workday without collapsing. Another tries to survive from day to day on a minimal disability pension.
Younger and middle-aged people often make concerted efforts to manage their illness. They maintain hopes and plans, reasons, and responsibilities. They have not given up or given in. They become innovators. To do so they listen to their bodies and stay in tune with them in ways that they had not and in ways that Western culture discourages. They may make use of indigenous support groups, newsletters, and computer networks independent of professionals. The groups and methods provide collective information and shared community. They may constitute the only community for people who have become isolated in their homes. Members compare stories, gain information, learn about treatment successes and failures, and offer encouragement to continue to struggle with illness and not to sink into invalidism. They may keep daily logs to refine and extend data for working with their professionals (Barrett 1997).
Shared comparisons give support group members measures of where and who they are now. Certain chronic conditions such as kidney failure and treatment programs such as cardiac rehabilitation bring people into sustained contact with others with similar problems. A collective spirit may develop in these situations that either supports patients remaining involved in prior pursuits, or confirms that the world of illness now dominates their lives.
Some chronically ill people become so adept at monitoring and managing their illness that they break through textbook definitions, create individualized regimens, and construct new ways of living with their illness; but medical professionals may not welcome their innovations. Alonzo Plough (1986) argues that patients who know too much use medical terms and request specific treatments that anger their practitioners. Practitioners sometimes push these patients back into the sick role when challenged by their growing expertise. Chronically ill patients sometimes find that their practitioners hold an ambivalent stance toward them. Their practitioners want them to take responsibility for themselves but on professionals’ terms, not on their own. When these ill people step outside or beyond medical authority, their practitioners resort to medical paternalism and authoritarian demands. Consequently, ill people’s strategies for managing illness can require strategies for effective negotiations with professionals to minimize conflict.
Conflict between practitioners and patients can arise from unstated assumptions such as guiding metaphors. Kirmayer (1992, p. 326) shows how a man on renal dialysis assumed the metaphor of pollution and refused to receive a blood transfusion. His physician, however, assumed the metaphor of vision in which the eye sees the real, objective world of facts and the brain represents or mirrors it. Technology extends vision and available facts. If this patient would ‘see’ things accurately, then he would come to the same conclusion. However, patients have their own metaphors, values, and sentiments. Assumed values and unspoken priorities are played out in the ways that people live with illness.
Stigma and Stigma Control
Experiencing stigma is a common consequence of chronic illness and a constant threat in some ill individuals’ view. If so, stigma makes a person vulnerable to negative social identifications and self-definitions. Stigma results from being identified as flawed, discredited, or spoiled (Goffman 1963; Jones et al. 1984). A defined difference from ordinary peers separates a person and confers an actual or potentially devalued identity.
That difference often becomes a master status, such as ‘disabled person,’ ‘leper,’ or ‘AIDS victim,’ that floods all statuses and identities. The stigmatizing label defines the person and every other defining characteristic she possesses. Thus, a woman who uses a wheelchair because of multiple sclerosis becomes a disabled mother, handicapped driver, disabled worker, and wheelchair dancer.
The labels are attached to the person, but stigma arises in interaction and within relations. Social scientists, like lay people, have treated some conditions such as AIDS, epilepsy, and leprosy as if inherently stigmatizing. Other conditions may elicit more neutral responses on the surface, but their consequences such as symptoms, disabilities, unemployment, or reduced performance elicit stigmatizing definitions of difference. Often other people dissociate the ‘understandable’ reason for an ill person’s difference from his behavior eliciting the stigmatized response. Then blame is turned back upon this person, who is made morally culpable for the stigmatized response itself (Jackson 1992). In essence, the individual is blamed for the behavior and blamed again for being stigmatized for it.
Whether the person experiences being stigmatized arises in interaction. Scambler (1984) and Scambler and Hopkins (1988) distinguish between enacted and felt stigma in their study of ninety-four adults with diagnosed epilepsy in the London area. Enacted stigma means instances of discrimination against people because they are defined as different. Felt stigma derives from fear of discovery of this difference and shame about having it. Felt stigma reflects a person’s internalized social values about her condition or difference. Scambler and Hopkins (1986) report that their interviewees act upon felt stigma, and thus limit possibilities for enacted stigma to occur, but actually experience little enacted stigma. Schneider and Conrad (1983) describe more experiences of enacted stigma in their interviews of eighty self-selected young Mid-Western Americans. Essayist Nancy Mairs (1996) suggests that unlike in the United States, the English assume that persons with disability neither seek nor exploit their situations. Following such cues with systematic comparative research would refine notions of stigma and yield insights about how cultural rules shape responses to illness.
Schneider and Conrad portray how visual images of epilepsy become taken as objective evidence of fundamental disreputability in this woman’s statement:
It’s one of those fear images; it’s something that people don’t know about and has strong negative connotations in people’s minds. It’s a bad image, something scary, sort of like a beggar; it’s dirty, the person falling down and frothing at the mouth and jerking and the bystanders not knowing what to do. It’s something that happens in public which isn’t nice. (1983: 154)
Fear, guilt, and shame comprise felt stigma. Questions of ‘Why me?’ and ‘What did I do to deserve this?’ reveal how individuals accept the moral accountability imbedded in collective images of illness. Meredith B. McGuire and Debra J. Kantor (1987) studied three healing groups; each one emphasized individual responsibility for illness, albeit in different ways. The occult group saw illness as cleansing and pain as being present when a person ‘needed’ it, the metaphysical group saw health as the normal human condition and illness as error in thought, and the Christian group viewed illness as caused by sin. Many people may reject the language of sin while upholding views of the sick person as guilty or devalued for being ill, views that he or she may share. Guilt and shame last when the person faces daily consequences of not being able to function as before—a spouse’s distancing, children’s belligerence about added tasks … impoverishment.
Guilt and shame increase when chronically ill people view themselves as socially incompetent. Inability to uphold basic social rules about cleanliness, bodily functioning, and sociability evokes shame, particularly when visible transgressions occur in public. Gerhard Nijhof (1995) states that his respondents with Parkinson’s disease felt shamed by their inability to control their excessive saliva, impassive faces, bent bodies, involuntary jerks and tremors, and clumsy table manners. Linda S. Mitteness (1987a, 1987b) and Lea MacDonald (1988) show how potential public shame, due to urinary or bowel incontinence, leads to withdrawal.
Because enacted stigma dramatizes difference, it magnifies loss. Discovering how others view one’s self can be shocking. Such events live on in the minds of those who felt marked by them. When possible, the ill person will henceforth try to conceal or limit potentially discrediting views of self. What to tell, when to tell, how to tell and how much to tell all pose ethical dilemmas to a chronically ill person (Charmaz 1991; Schneider and Conrad 1980, 1983). Relationships, resources, control, and especially risks figure in the calculus of telling, and fateful telling occurs at points within the life course. In my study (Charmaz 1991), young and middle-aged adults risked losing acceptance and elders risked losing autonomy. Telling prospective partners too early sent them running. Telling too late was bad faith. Morgan (1982) states that elderly residents in a retirement center with multiple levels of care did not tell nursing staff of their increasing frailty because they risked losing their apartments and their independence.
Understanding such actions can aid families and professionals to remain sensitive to the person’s feeling of vulnerability, and not to increase it through their response. They can easily lose sight of the person’s sense of heightened vulnerability if he acts upon it without talking about it. Scambler and Hopkins (1988) find that people with epilepsy handle felt stigma by maintaining secrecy, which reduces enacted stigma but does so at the cost of disrupting their lives. Other studies indicate that felt stigma leads to limiting social relations and restricting involvements (Charmaz 1991; MacDonald 1988; Mitteness 1987a, 1987b). Susan Hopper (1982) describes an interviewee whose diabetes first cost him his job and then his girlfriend because he no longer could ‘give service.’ Afterwards the interviewee kept to himself.
Invisible and visible disabilities pose several different problems in which stigmatizing definitions can emerge. People with invisible disabilities are judged by conventional standards and blamed accordingly when they transgress them. Thus, they suffer public accusations of usurping the rights of the handicapped (such as when they occupy handicapped subway seats or parking spaces), imputations that their poor performance reflects a sick mind, not an impaired body, and private doubts as to what is real. These people seek acknowledgment and empathy. Nonetheless, they can still choose to conceal their disability. People with visible disabilities cannot. Visible disability can elicit rude intrusions and judgments of difference whenever in public. Ostentatious unsolicited help as well as scorn may be showered upon people with obvious disabilities. In either case, disability marks the person as flawed (Jones et al. 1984). Corbin and Strauss (1988) interviewed a woman who used a walker because of rheumatoid arthritis. She said:
People so often treat you like you are deaf, dumb, blind, and retarded. [People’s attitudes … as a company we belong to a trade association and some of those people! I was asked to be on a committee and when a man found out I had a walker, he was very concerned because I was to be one of the hostesses. What difference does it make when all I have to do is stand there and talk to people? (Corbin and Strauss 1988: 213)
This woman acknowledged her disability, worked around it, and rejected stigmatizing definitions. Her routines allowed her to maintain her activities and a view of herself as whole. Until and unless routinized, a visible disability constantly reminds self and others of one’s changed health and life. Visibility itself varies. Conditions such as mastectomy or impotence can cause someone to feel fundamentally flawed despite their relative lack of visibility. For example, one of Fallowfield and Clark’s (1991) interviewees said of the breast prosthesis: ‘I hate it so much—last week I just felt so angry that they’d taken off my breast and given me that awful alien thing—I threw it across the room and cried’ (1991: 66). After a lumpectomy another woman remarked, ‘When he said they’d remove a little lump, I felt relieved. I mean no one really wants to lose a breast, do they? But when I look at what’s left, I wonder if it was worth it. I mean, I’m still a freak aren’t I?’ (1991: 68).
Any illness that sets a person apart as different and diminished has stigma potential and thus can affect interaction. The following characteristics increase stigma potential: a high incidence within disparaged groups, compromised adult status, loss of bodily control, sexual transmission, possible pollution, odor, and uncleanli-ness. MacDonald (1988) writes that fear of offending other people with noise and odors led rectal cancer patients to restrict their lives. Similarly, Mitteness (1987a, 1987b) finds that elders who had urinary incontinence commonly restricted their outings and interactions.
Davis (1963) argues that efforts toward prior identity preservation fail in direct proportion to the degree and extent of visible disability. Both enacted and felt stigma contribute to difficulties in preserving prior identity. The disability rights movement has made significant recent changes in the lives of its proponents. However, many ill people still find themselves responsible for preserving or reconstructing their identity after losses—whether their disability is visible or invisible. Concealment of an invisible but potentially stigmatizing mark of difference allows the person to preserve prior identities for a time and under specific conditions. Many disabilities do not remain completely invisible to a discerning observer. Partners or parents may perceive cues more readily than a professional who does not have steady contact. Fatigue, flare-ups, or distress may render symptoms visible. Disabling illnesses such as arthritis or multiple sclerosis grow in severity and thus shift from invisible to visible. If, in the interim, a person exerts substantial effort to keep illness secret, it takes on enlarged meaning for personal identity and self-concept. As Jones et al. (1984) contend, the person cannot put this aspect of self into perspective because normal social comparisons have been precluded. When invisible disability undermines fundamental ways of defining self, the person is isolated, and social comparisons are not possible. Then coherence and stability of self-concept is at risk.
Self and Social Identity
Stigma can wreak havoc upon the self for it forces unwelcome new ways of conceiving self and situation. Still, serious chronic illness alone can render social identity and self problematic (Mathieson and Stam 1995). For months and years, people may try to forestall illness from touching the self. Valued roles and pursuits preserve continuity and coherence of self. People may acknowledge that illness affects their lives but resist its effects upon the self. They conceptualize it as a ‘condition, not an illness,’ ‘just aging,’ or ‘a spell’ and therefore maintain a sense of continuity and coherence of self (Charmaz 1991). They put it into the past by saying they ‘had cancer’ or ‘had lupus’ and decree that it will remain in the past. They also redefine criteria for crucial indicators of illness. As Mitteness (1987b) discovered, elders redefined incontinence to fit the way their bodies now functioned. For one elder, it was not incontinence if no accident occurred in public. For another, it was not incontinence if she made it to the bathroom, but did not get as far as the toilet. For others, it was not incontinence as long as the pads sufficed.
People with serious chronic illnesses must repeatedly rethink how they live and who they are becoming (Charmaz 1995). Self and social identities are intertwined in daily actions and endeavors. Chronically ill people seek to reestablish their legitimacy after disruption and devaluation makes them vulnerable. However, they may not go about it in ways of which their practitioners and families approve (Bury 1991). As life narrows, the ingredients shrivel for constructing a valued self and legitimate social identity. Their quality of life becomes problematic (Albrecht and Fitzpatrick 1994). Social, economic, and psychological resources expand possibilities and options. Without such resources, possibilities and options rapidly contract. Using available resources may be fraught with risks and increase vulnerability. Taking sick leave can result in increased scrutiny of an employee’s performance. Filing an insurance claim might contribute to raising the business’s group insurance rates. Social resources mean that commitments, assistance, and back-up are available—as long as caregivers do not wear out. Concrete assistance smoothes problems and reduces anxieties. Commitments keep the ill person within a web of relationships—from commitments that permit returning to work to commitments to visit or to run errands. Economic resources allow an individual to purchase objects and services that make life easier—a car with an automatic shift, a one-story home, household help. The more resources available, the more latitude the person has to take time-outs for illness and then return to earlier pursuits. Identity questions and change of self are muted or occur over long periods of time. As resources dwindle, identity questions and changes of self may be forced much earlier.
Experiencing chronic illness can mean embarking on an odyssey apart from the busyness of other adults’ lives. Chronic illness separates the person from the social body, but also gives rise to a story that brings this individual back to reintegrate self on a different level. Someone may leave old identities behind but gain deeper meanings. Long stretches of time allow the person to reflect upon jarring images of self and to make sense of loss. Loss of self and social identity do comprise a fundamental form of suffering among chronically ill people (Charmaz 1983). Still, they may come to believe that facing such losses moves them toward transcending loss. Earlier vulnerability becomes a source of strength as they redefine illness as a time for reflection, reassessment, and redirection (Charmaz 1991, 1994; Frank 1991, 1993).
Implications of Studying the Experience of Illness
What are the implications of this growing research literature? Two major areas are prominent: (1) ideas for institutional changes and health policy reform, and (2) directions for further research and development of the field. Insights from the individual and interactional levels of the illness experience recast institutional and policy levels in new light. A new model for chronic care with strong participatory and educational components would shift the medical model of acute care from its individual bias and basis to the social realm. This new model could change both the experience of illness and the effectiveness of care. A social model for chronic care means an integrated set of varied services and sustained patient involvement for giving as well as receiving services.
The current medical model of acute care fragments treatment, isolates patients, and individualizes their experience of chronic illness. Managed care has intensified these processes through curtailing and cutting services. Patients and caregivers’ responsibility for care has therefore increased. Simultaneously, the graying of contemporary societies means that more people everywhere can expect to live with a serious chronic illness and its resulting disabilities. This prospect poses dilemmas for societies and health-care systems—particularly if the assumptions of the medical model remain essentially unchallenged. Currently, care is meager, at best, in developing societies and deteriorating in many developed nations. Concerns about the quality of life necessitate comprehensive support services for people with chronic illnesses. They often live independently in a frail state for protracted periods. Fragmented, limited, or stopgap services organized on an acute-care model do not meet the needs of average and impoverished citizens. These structural problems of care increase their physical as well as social, psychological, and economic vulnerability.
Studies of the experience of chronic illness reveal gaps in the medical model of acute care. Rather than reducing services, the prospect of more chronically ill people requires more services. The reductionist acute-care model assumes one atomized individual as the unit of care, separates this person from her world, views problems with illness as inhering in this individual, and addresses those problems amenable to medical interventions (Charmaz and Paterniti 1999). As evident above, patients currently also make these assumptions and assume recovery. Patients need time to learn what their illnesses mean and to have tools for the lessons. These tools include sustained community education before individuals become sick, a collective context of care and thus of shared knowledge among patients, and continued partnerships with patients and families.
Knowing a diagnosis seldom translates into realizing what it means to live with it. Including experienced patients as teachers and mentors to new patients would show them what their illness means and suggest ways to live with it. New patients might then adapt to their conditions more quickly than otherwise. Should adaptation be slow, this approach provides another, likely more neutral, way for professionals to learn about patients’ expectations and level of knowledge than occurs within the treatment clinic or examining room. By learning more about metaphors their patients invoke, professionals can understand their patients’ difficulties in coming to terms with their illnesses. As understanding increases, blame and conflict decrease.
Chronic illness points to collective problems of living; it occurs within a social context and it poses problems that go beyond medical management and the individual patient. Managing a life can become as problematic as keeping symptoms quiescent, and that requires other people. The effects of serious chronic illness of one person reverberate through the home. As illness progresses in severity and disability, it spreads out and devours other people’s time, effort, and concern. The medical model of acute care-both in traditional or stripped-down managed care forms—fails to address these points. A social, community-based model of care would begin by taking the chronically ill person’s situation as the fundamental unit of concern, not the disease process within that person.
People with chronic illnesses can and do become knowledgeable about their conditions; these individuals are not always the unsophisticated passive patients the medical model assumes. Nor do they have something within them that treatment can readily ameliorate. They need services to help them make, and moreover to maintain, gains. Leaving people on their own fosters their retreat into isolated private worlds and subsequently increases the likelihood that they will discount, ignore, or misunderstand medical mandates. Complications and setbacks follow.
Reorganizing care to keep patients involved has practical consequences. Such involvement would reduce noncompliance and medical mishaps, maintain optimal health with chronic illness, and enhance quality of life. A collective organization of care with and for patients furthers their involvement. Adopting principles from activist support groups can break down the isolation chronically ill people often experience and break up the reductionist medical model. These principles foster developing mutual information exchanges, offering caregiver assistance, and involve patients as active participants, all within a supportive network of patients and professionals.
Experiencing chronic illness at times seems incomprehensible. Vulnerability increases when people are isolated; it decreases when ill people learn that others have weathered their illnesses and can give voice to that experience. Active patients involved in their own treatment feel less vulnerable because they are taking control.
My analysis in this chapter lays out central directions of past research on the experience of illness. Which directions should our studies take next? The body of research in this area points the way to go deeper into the subjective and further outward into the social. This literature has contributed to theoretical and empirical interest in the body and emotions (Olesen 1994) and promises more significant developments in these areas—we are embodied beings and we do have feelings. Past social scientific emphasis on rationality has channeled vision away from these two significant dimensions of human experience. This area of study brings them back with challenges to create nuanced analyses not only of crisis, suffering, and loss, but also of renewal, hope, and transcendence.
Chronically ill people’s stories mediate between their bodies and emotions because their stories make sense of their altered lives and limited bodies. These people’s stories converge with the current narrative turn in the social sciences for their stories are filled with turning points, epiphanies, and reflections, and thus give narrative analysts grist for discovering change and transformation in adult life. These stories resonate because they are our stories, albeit writ bold and condensed in time. They tell of change and transition, of beginnings and endings throughout adult life. Yet stories alone do not cover the experience. Not everyone can find words to express inchoate feelings; not every culture condones the subjective story. The researcher’s methods must fit the problem studied and the people observed. Interviews provide a means of going deep into the story. Because they frame discourse in a rational account, however, interviews may mask feelings just beneath the surface (see also Lillrank 1998). As reconstructions of the past, interviews never replicate experience, they render it. Stories in interviews serve new and different purposes than when originally experienced and first told.
To go deeper into the subjective story, we need to see and hear how it develops as it is lived. Stories from single interviews are partial and may isolate moments rather than relate the life course. Both researcher and reader may freeze responses in time and place, and thus reify the results as objective truth (Williams 1984). Longitudinal studies following people throughout the course of their illness can yield nuanced analyses of the ebb and flow of experience. Such studies provide context and meaning and illuminate shifts and changes. These studies may also refine current conceptions of responses to illness and frailty. For example, age and social class are confounded in research about the most elderly generation. Many of these elders did not receive advanced education, and thus their thoughts, feelings, and actions toward illness and disability may later be discovered to reflect social class more than age.
A hazard of any kind of research is inaccessible subjects. The earlier research focused on individuals has largely left out precisely those individuals who are difficult to trace—those who are isolated and impoverished. People without families or sustained help slip through the medical system and slip out of our studies. What happens when these individuals lose their livelihoods in addition to their health? Their stories might illuminate problems in the institution of medicine and, moreover, the larger society.
Although the field has started with the subjective, it can move into the realm of social interaction. The research can move to attend to all crucial participants in the scene, rather than maintain the current unitary foci on ill persons, couples, or caretakers. Further research directions include: (1) situating research within home and community, as worlds to study, (2) evaluating the relative significance of support group and/or social movement participation (Maines 1991; Sandstrom 1990), and (3) conducting comparative research of the experience of people with similar conditions within different social classes and between different societies to illuminate how social, structural, and cultural conditions shape meanings and actions toward illness.
This area of inquiry also has rich potential for continuing the development of theoretical analyses initiated by its progenitors. Social scientists can take their analyses of the experience of illness beyond narrow empirical data to shape theoretical understandings. At present, theories of suffering and loss are emerging in part from studies of illness. In the past, theoretical development may have been most apparent in analyses of construction and development of self and of the significance of stigma. However, other fruitful theoretical links can be made between individual experience and collective life, such as within social movement or community participation. Any theorizing arising from this area has the advantage of grounding in actual life, and therefore, gains analytic precision and practical applicability.
Finally, studying the experience of illness brings research subjects into social science narratives without abandoning our narratives to them (Charmaz in press). Social scientists bring an analytic focus to our subjects’ stories and synthesize their experience. Despite our scientific allusions and narrative claims, our subjects remain the best judges of whether we provide a useful analytic handle on their oft elusive experience.