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Sm. Sci. Med. Vol. 37, No. 3, pp. 281-283, 1993Printed in Great Britain. All rights reserved0277-95361936.00 0.00Copyright Q 1993 Pergamon Press Ltd

ANTHROPOLOGICAL PERSPECTIVES ONCHRONIC ILLNESS

INTRODUCTIONSUZANNE HEURTIN-ROBERTS and GAY BECKER*

School of Social Welfare, University of California, Berkeley, 120 Haviland Hall, Berkeley, CA 94720,U.S.A. and *Social and Behavioral Sciences & Medical Anthropology Program, University of California,San Francisco, San Francisco, CA 94143-0612, U.S.A.

Chronic illness has received little attention in medicalanthropology as a topic of research, yet the study ofillnesses considered to be chronic generate importantquestions about the ways in which illness is conceptu-alized, the influence of biomedical perspectives onillness management, the role of medical treatment,and the cost and accessibility of care. Defined here ashealth conditions that can be managed but not cured,chronic illnesses have ongoing or periodic symptomsthat interfere with daily life. Anthropological studiesof such conditions can be found, for the most part,within the broader literature on illness experience.With a few exceptions, however [l-6], these worksdo not examine the role of chronicity in experiencingan illness. Sociology, in contrast, has developed aconsiderable literature on how chronic illnesses areunderstood and experienced, including how indi-viduals manage daily life, the effects of chronic illnesson identity, and the effects of interactions betweenchronically ill persons and the health care deliverysystem [7-lo]. While a sociological approach empha-sizes the effects of societal structure on illness,an anthropological approach emphasizes a cross-cultural, comparative approach that enables anthro-pologists to question basic assumptions about healthand illness.

Applying the comparative perspective of anthro-pology to issues of chronicity can open up new linesof inquiry with respect to basic conceptualizationsabout illness and illness experience. We may ask,for example, whether there are differences betweenconcepts of chronicity cross-culturally. If so, what arethese differences and what factors affect them? Cross-cultural works on illness seldom differentiate betweenviews of illness as chronic or acute. How are illnessesviewed that cannot be cured in non-western so-cieties? Do all people have a concept of illness aspotentially chronic? Questions have been raisedabout chronicity and schizophrenia cross-culturally,for example. It has been suggested that chronicity isa concept constructed by Western psychiatry and is aphenomenon created by interaction between Westernsociety and its mental health system [l 11.If the notionof chronicity is not found cross-culturally, perhaps

chronic illness is a biomedical construct that islearned by persons in Western society when theydevelop a health condition that cannot be cured. Sucha view would suggest that individuals are socializedas patients in biomedicine to think of their illnessesas chronic and manage them within a medical con-text. Views of chronicity in Western societies maybe so confounded by biomedical constructs thatindigenous illness beliefs cannot be completely separ-ated from them. Conversely, it may be that theconcept of chronicity has become a part of lay healthculture in the West, so that individuals are acquaintedwith the notion of chronicity before they ever ap-proach a biomedical practitioner.

Comparative questions about chronicity may alsobe asked about processes of healing. Cross-culturalworks on illness seldom delineate different healingactivities based on this dichotomy. Healers are chosenfor other reasons, such as beliefs about cause ofillness, who treats what condition in pluralistic heal-ing systems, or a societys overall explanatory systemof health. Does identification of a condition aschronic affect decisions about utilization of healingsystems, and if so, how? Although biomedicine ident-ifies chronic illness as an ongoing state of disease,having continuity over time, it is possible that long-term illnesses are viewed quite differently in othermedical traditions, for example, as isolated acuteepisodes or as unrelated illnesses.

The notion of curing is central to all healingsystems, but chronic illnesses, because they cannot becured, may present dilemmas for patients and healersabout the failure to cure. How does a given societysvalues affect the responses of healers and patientswhen cure does not occur? When a health conditioncannot be cured, failure to cure is not only linkedto certain kinds of explanations but to subsequentbehaviors on the part of the individual and others.For example, two or more healing systems may beutilized simultaneously in search of a cure, or the sickperson may come together with healers and kin inrepeated healing rituals over time. In some traditionsof healing, both biomedical and others, failure to cureis frequently attributed to failure to follow prescribed

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282 Introductiontreatment [12-141. Is there a point in the diagnosis ofchronic illness when the patient is absolved of suchresponsibility and the condition is deemed chronic?The literature suggests that persons who have chronicillnesses in Western societies continue to be heldresponsible if their conditions worsen [l-3, 141. Ischronicity ever an escape from failure on the part ofboth patient and healer? Do biomedical practitionersuse chronicity as a conceptual device to cope withtheir own sense of powerlessness in a cure orientedprofession?

Economic problems associated with chronic ill-nesses raise an additional set of questions that havebeen, so far, ignored by anthropologists. Chronicillnesses are commonly acknowledged to be an econ-omic burden on those who experience them [151, suchas time lost from work, the effects of redistribution offamily tasks on wage-earning, and the cost of care.Many questions arise, such as, given competition forscarce resources, how do those who have chronicillnesses fare cross-culturally? How do economicsshape the experience of chronicity? How does achronic illness affect pre-existing economic inequities?

Raising questions about the role of chronicityin anthropological studies of health and illness cross-culturally casts studies of chronic conditions inWestern societies in a new light. Because chronicity isan infrequent category of anthropological conceptu-alization, the question arises as to whether chronicityshould be a focus of future work or whether its useas a category of inquiry simply reflects a conceptualcategory in biomedicine. Ironically, biomedicine doesnot emphasize chronic illness, either, despite its ten-dency to dichotomize health conditions as eitheracute or chronic. Instead, biomedicine focuses on thetreatment of acute illnesses that are responsive tomedical intervention rather than on chronic illnessesthat can be medically managed but not cured. More-over, limited efforts have been made in biomedicineto link social management with medical treatment,and consequently, chronicity remains an unmet chal-lenge of biomedicine.

Why is chronic illness ignored, even when it is aconceptual entity of a particular healing system? Onepossible explanation is that chronic conditions, be-cause they cannot be cured, fall on the margins ofhealing systems. Chronic illnesses are surrounded byambiguity in any healing system. Consequently, it islikely that much of their management occurs outsideof formal healing traditions, and takes place, instead,as part of the mundane business of everyday life. Thischaracteristic of chronic illnesses, that their experi-ence and management falls on the boundaries ofhealing systems, suggests that chronic illness canserve anthropologists as a window onto culture.

The avenues through which an exploration ofchronicity can be undertaken are numerous. Thefollowing are a few examples of the ways chronicillness may be used as a window on the relationshipbetween health and culture. First, because of its

biocultural emphasis, anthropology can examine theintersection of culture and biology in specific chronicillnesses. Second, chronic illnesses may provide afocus for longitudinal studies of social and culturalinfluences on physical conditions because they touchon so many aspects of life for an extended period oftime. Third, chronic illnesses can be used as a devicein cross-cultural studies through which to focus ourgaze on different societies and cultures, much aschild-rearing practices or folklore have been used toinform broader questions. Fourth, the relationshipbetween economy and culture can be exploredthrough an analysis of specific chronic illnesses orthrough an analysis of policies that are applied tochronic illnesses. Finally, the study of chronic illnessprovides an opportunity to examine illness as a wayof life.

This last avenue of study has direct bearing onthe papers in this collection, which address livingwith illnesses that are considered chronic in Westernsocieties. Their comparative perspective is implicitand informs the questions they raise. With oneexception, these papers examine the experience ofchronicity in the United States. They address fourdifferent biomedical disease entities, of which all butthe last are viewed as life threatening: hypertension,cancer, asthma, and arthritis. In each case the illnessis viewed by those who experience it as continuous,with periodic exacerbations or acute episodes. Allfour papers address questions such as, does illnessexperience become part of normal daily life? If so,do individuals continue to view themselves as ill?How is illness conceived when it shapes individualslife experience? As the authors explore questions suchas these, certain themes emerge.

First, all papers examine the effects of culturalvalues on illness experience. They demonstrate thatillness experience is informed by different societiesand ethnic groups views of health and illness. Singer,in her comparative study of Japanese-Americans andAnglo-Americans who have cancer, illustrates howtheir respective value systems affect their conceptionof and management of their illnesses. In their com-parative study of self-care among Americans andDanes who have arthritis, McLaughlin and Zeebergattribute their finding that Americans were less likelyto seek out their physicians and more likely to usepreventive management strategies than Danes to thetwo societies differing cultural ideologies. In theirstudy of persons who have asthma, Becker et al.illustrate how American values about self-reliance arereflected in individuals efforts to manage episodesof asthma alone. Heurtin-Roberts takes the theme ofcultural values in another direction in her study ofAfrican-American women diagnosed with hyper-tension, as she demonstrates how values shaped theiruse of their illnesses as cultural resources to mustersocial support.

Lay conceptualizations of chronic illness is a sec-ond, related, theme of the papers. Heurtin-Roberts

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Introduction 283demonstrates how two distinct folk illnesses describedby women in her study may be viewed as culturalidioms of distress, while Singer illustrates how bothJapanese-Americans and Anglo-Americans focusedon being well rather than being sick. As Singer pointsout, physical integrity is only one component ofhealth. The notion of maintaining health in theabsence of physical integrity is supported in thestudies of asthma (Becker et al.) and arthritis(McLaughlin and Zeeberg): Americans who hadasthma tried to maintain normal lives by not callingattention to their health conditions, while Americansand Danes who had arthritis attempted to maintaina sense of normalcy, although cultural differenceswere reflected in the ways they sought to achievenormality through self-care.

The relationship between self-sufficiency andefforts to control an illness that is chronic withoutrecourse to the health care system is a third theme ofthese papers. The respondents in these studies viewedthemselves as self-sufficient, and when their efforts tocontrol their illnesses were successful, their sense ofmastery was reinforced. Maintaining control over theillness was closely related to identity and to a senseof stasis in everyday life. Heurtin-Roberts, in address-ing the long-term incorporation of illness into onesidentity, raises the question of who controls defi-nitions of disease and experiences of illness, andsuggests that folk models of illness may be directlyrelated to issues of control and negotiation forpatients. Becker et al. portray asthma sufferers on-going struggle with unpredictability, and their un-remitting efforts to control their illnesses withoutresorting to emergency medical interventions.McLaughlin and Zeeberg underline the Americanresponse to chronicity by illustrating how, in contrastto Danes, Americans attempted to maintain controlover arthritis by avoiding the medical system.

The limits of biomedicine in managing chronicillness is a fourth theme of these papers. Only theDanes in McLaughlin and Zeebergs comparativestudy readily turned to physicians for medical care.While the study of hypertension (Heurtin-Roberts)suggests that the health care system may have limitedimpact on individual management of chronic illnessand that biomedical concepts of disease have rela-tively little impact on lay concepts of illness, the studyof asthma (Becker et al.) illustrates that efforts to usethe health care system may backfire and lead to aview of the health care system as a potential sourceof danger.

Finally, the economic dilemmas posed by chronicillnesses are implicit in these papers, whether inseeking medical treatment or in managing daily life.While the women in Heurtin-Roberts study waitedfor hours to be seen at a low income clinic, emergencyservice staff apparently viewed asthma patients aswasting staff time in an economy of scarce resources

(Becker et al.). In contrast, the lives of Danes whohad arthritis were eased by special, state-subsidizedhousing (McLaughlin and Zeeberg). Non-medicalresources for chronic illnesses could play an import-ant role in illness management but, in the UnitedStates, at least, the dominance of biomedicine appar-ently precludes the attention of policy-makers tonon-medical avenues that have the potential toeffectively ease the burden of living with a chronicillness.The goal of this collection is to stimulate anthropo-logical attention to issues raised by chronic illnessesin order to further deepen our understanding of therelationship between illness and culture. The papersthat follow are efforts to address some of theseunanswered questions.

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