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Sm. Sci. Med. Vol. 37, No. 3, pp. 281-283, 1993 Printed in Great Britain.

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SUZANNE 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 medical anthropology as a topic of research, yet the study of illnesses considered to be chronic generate important questions about the ways in which illness is conceptualized, the influence of biomedical perspectives on illness management, the role of medical treatment, and the cost and accessibility of care. Defined here as health conditions that can be managed but not cured, chronic illnesses have ongoing or periodic symptoms that interfere with daily life. Anthropological studies of such conditions can be found, for the most part, within the broader literature on illness experience. With a few exceptions, however [l-6], these works do not examine the role of chronicity in experiencing an illness. Sociology, in contrast, has developed a considerable literature on how chronic illnesses are understood and experienced, including how individuals manage daily life, the effects of chronic illness on identity, and the effects of interactions between chronically ill persons and the health care delivery system [7-lo]. While a sociological approach emphasizes the effects of societal structure on illness, an anthropological approach emphasizes a crosscultural, comparative approach that enables anthropologists to question basic assumptions about health and illness. Applying the comparative perspective of anthropology to issues of chronicity can open up new lines of inquiry with respect to basic conceptualizations about illness and illness experience. We may ask, for example, whether there are differences between concepts of chronicity cross-culturally. If so, what are these differences and what factors affect them? Crosscultural works on illness seldom differentiate between views of illness as chronic or acute. How are illnesses viewed that cannot be cured in non-western societies? Do all people have a concept of illness as potentially chronic? Questions have been raised about chronicity and schizophrenia cross-culturally, for example. It has been suggested that chronicity is a concept constructed by Western psychiatry and is a phenomenon created by interaction between Western society and its mental health system [l 11. If the notion of chronicity is not found cross-culturally, perhaps

chronic illness is a biomedical construct that is learned by persons in Western society when they develop a health condition that cannot be cured. Such a view would suggest that individuals are socialized as patients in biomedicine to think of their illnesses as chronic and manage them within a medical context. Views of chronicity in Western societies may be so confounded by biomedical constructs that indigenous illness beliefs cannot be completely separated from them. Conversely, it may be that the concept of chronicity has become a part of lay health culture in the West, so that individuals are acquainted with the notion of chronicity before they ever approach a biomedical practitioner. Comparative questions about chronicity may also be asked about processes of healing. Cross-cultural works on illness seldom delineate different healing activities based on this dichotomy. Healers are chosen for other reasons, such as beliefs about cause of illness, who treats what condition in pluralistic healing systems, or a societys overall explanatory system of health. Does identification of a condition as chronic affect decisions about utilization of healing systems, and if so, how? Although biomedicine identifies chronic illness as an ongoing state of disease, having continuity over time, it is possible that longterm illnesses are viewed quite differently in other medical traditions, for example, as isolated acute episodes or as unrelated illnesses. The notion of curing is central to all healing systems, but chronic illnesses, because they cannot be cured, may present dilemmas for patients and healers about the failure to cure. How does a given societys values affect the responses of healers and patients when cure does not occur? When a health condition cannot be cured, failure to cure is not only linked to certain kinds of explanations but to subsequent behaviors on the part of the individual and others. For example, two or more healing systems may be utilized simultaneously in search of a cure, or the sick person may come together with healers and kin in repeated healing rituals over time. In some traditions of healing, both biomedical and others, failure to cure is frequently attributed to failure to follow prescribed


Introduction biocultural emphasis, anthropology can examine the intersection of culture and biology in specific chronic illnesses. Second, chronic illnesses may provide a focus for longitudinal studies of social and cultural influences on physical conditions because they touch on so many aspects of life for an extended period of time. Third, chronic illnesses can be used as a device in cross-cultural studies through which to focus our gaze on different societies and cultures, much as child-rearing practices or folklore have been used to inform broader questions. Fourth, the relationship between economy and culture can be explored through an analysis of specific chronic illnesses or through an analysis of policies that are applied to chronic illnesses. Finally, the study of chronic illness provides an opportunity to examine illness as a way of life. This last avenue of study has direct bearing on the papers in this collection, which address living with illnesses that are considered chronic in Western societies. Their comparative perspective is implicit and informs the questions they raise. With one exception, these papers examine the experience of chronicity in the United States. They address four different biomedical disease entities, of which all but the last are viewed as life threatening: hypertension, cancer, asthma, and arthritis. In each case the illness is viewed by those who experience it as continuous, with periodic exacerbations or acute episodes. All four papers address questions such as, does illness experience become part of normal daily life? If so, do individuals continue to view themselves as ill? How is illness conceived when it shapes individuals life experience? As the authors explore questions such as these, certain themes emerge. First, all papers examine the effects of cultural values on illness experience. They demonstrate that illness experience is informed by different societies and ethnic groups views of health and illness. Singer, in her comparative study of Japanese-Americans and Anglo-Americans who have cancer, illustrates how their respective value systems affect their conception of and management of their illnesses. In their comparative study of self-care among Americans and Danes who have arthritis, McLaughlin and Zeeberg attribute their finding that Americans were less likely to seek out their physicians and more likely to use preventive management strategies than Danes to the two societies differing cultural ideologies. In their study of persons who have asthma, Becker et al. illustrate how American values about self-reliance are reflected in individuals efforts to manage episodes of asthma alone. Heurtin-Roberts takes the theme of cultural values in another direction in her study of African-American women diagnosed with hypertension, as she demonstrates how values shaped their use of their illnesses as cultural resources to muster social support. Lay conceptualizations of chronic illness is a second, related, theme of the papers. Heurtin-Roberts

treatment [12-141. Is there a point in the diagnosis of chronic illness when the patient is absolved of such responsibility and the condition is deemed chronic? The literature suggests that persons who have chronic illnesses in Western societies continue to be held responsible if their conditions worsen [l-3, 141. Is chronicity ever an escape from failure on the part of both patient and healer? Do biomedical practitioners use chronicity as a conceptual device to cope with their own sense of powerlessness in a cure oriented profession? Economic problems associated with chronic illnesses raise an additional set of questions that have been, so far, ignored by anthropologists. Chronic illnesses are commonly acknowledged to be an economic burden on those who experience them [ 151,such as time lost from work, the effects of redistribution of family tasks on wage-earning, and the cost of care. Many questions arise, such as, given competition for scarce resources, how do those who have chronic illnesses fare cross-culturally? How do economics shape the experience of chronicity? How does a chronic illness affect pre-existing economic inequities? Raising questions about the role of chronicity in anthropological studies of health and illness crossculturally casts studies of chronic conditions in Western societies in a new light. Because chronicity is an infrequent category of anthropological conceptualization, the question arises as to whether chronicity should be a focus of future work or whether its use as a category of inquiry simply reflects a conceptual category in biomedicine. Ironically, biomedicine does not emphasize chronic illness, either, despite its tendency to dichotomize health conditions as either acute or chronic. Instead, biomedicine focuses on the treatment of acute illnesses that are responsive to medical intervention rather than on chronic illnesses that can be medically managed but not cured. Moreover, limited efforts have been made in biomedicine to link social management with medical treatment, and consequently, chronicity remains an unmet challenge of biomedicine. Why is chronic illness ignored, even when it is a conceptual entity of a particular healing system? One possible explanation is that chronic conditions, because they cannot be cured, fall on the margins of healing systems. Chronic illnesses are surrounded by ambiguity in any healing system. Consequently, it is likely that much of their management occurs outside of formal healing traditions, and takes place, instead, as part of the mundane business of everyday life. This characteristic of chronic illnesses, that their experience and management falls on the boundaries of healing systems, suggests that chronic illness can serve anthropologists as a window onto culture. The avenues through which an exploration of chronicity can be undertaken are numerous. The following are a few examples of the ways chronic illness may be used as a window on the relationship between health and culture. First, because of its

Introduction demonstrates how two distinct folk illnesses described by women in her study may be viewed as cultural idioms of distress, while Singer illustrates how both Japanese-Americans and Anglo-Americans focused on being well rather than being sick. As Singer points out, physical integrity is only one component of health. The notion of maintaining health in the absence of physical integrity is supported in the studies of asthma (Becker et al.) and arthritis (McLaughlin and Zeeberg): Americans who had asthma tried to maintain normal lives by not calling attention to their health conditions, while Americans and Danes who had arthritis attempted to maintain a sense of normalcy, although cultural differences were reflected in the ways they sought to achieve normality through self-care. The relationship between self-sufficiency and efforts to control an illness that is chronic without recourse to the health care system is a third theme of these papers. The respondents in these studies viewed themselves as self-sufficient, and when their efforts to control their illnesses were successful, their sense of mastery was reinforced. Maintaining control over the illness was closely related to identity and to a sense of stasis in everyday life. Heurtin-Roberts, in addressing the long-term incorporation of illness into ones identity, raises the question of who controls definitions of disease and experiences of illness, and suggests that folk models of illness may be directly related to issues of control and negotiation for patients. Becker et al. portray asthma sufferers ongoing struggle with unpredictability, and their unremitting efforts to control their illnesses without resorting to emergency medical interventions. McLaughlin and Zeeberg underline the American response to chronicity by illustrating how, in contrast to Danes, Americans attempted to maintain control over arthritis by avoiding the medical system. The limits of biomedicine in managing chronic illness is a fourth theme of these papers. Only the Danes in McLaughlin and Zeebergs comparative study readily turned to physicians for medical care. While the study of hypertension (Heurtin-Roberts) suggests that the health care system may have limited impact on individual management of chronic illness and that biomedical concepts of disease have relatively little impact on lay concepts of illness, the study of asthma (Becker et al.) illustrates that efforts to use the health care system may backfire and lead to a view of the health care system as a potential source of danger. Finally, the economic dilemmas posed by chronic illnesses are implicit in these papers, whether in seeking medical treatment or in managing daily life. While the women in Heurtin-Roberts study waited for hours to be seen at a low income clinic, emergency service staff apparently viewed asthma patients as wasting staff time in an economy of scarce resources


(Becker et al.). In contrast, the lives of Danes who had arthritis were eased by special, state-subsidized housing (McLaughlin and Zeeberg). Non-medical resources for chronic illnesses could play an important role in illness management but, in the United States, at least, the dominance of biomedicine apparently precludes the attention of policy-makers to non-medical avenues that have the potential to effectively ease the burden of living with a chronic illness. The goal of this collection is to stimulate anthropological attention to issues raised by chronic illnesses in order to further deepen our understanding of the relationship between illness and culture. The papers that follow are efforts to address some of these unanswered questions.


Kleinman A. The Illness Narratives. Basic Books, New York, 1988. 2. Trostle J. A., Hauser W. A. and Susser I. S. The logic of noncompliance: Management of epilepsy from the patients point of view. Cult. Med. Psychiat. 7, 35-56,
1. 1983.

3. Wright A. and Morgan W. The creation of problem

patients. Sot. Sci. Med. 30, 951-959, 1990.

4. Kaufman S. R. Toward a phenomenology of boundaries in medicine: Chronic illness experience in the case of stroke. Med. Anthroo. 0. 2. 338-354. 1988. 5. Mitteness L. S. The management of urinary incontinence by community-licing elderly. The Gerontologist
27, 185-193, 1987.

6. Singer M., Fitzgerald M. H., Madden L., Voight von

Legat C. and Arnold C. D. The sufferers experience of hypoglycemia. In Research in the Sociology of Health Care, Vol. 6 (Edited by Roth J. and Conrad P.), pp. 147-175. JAI Press, Greenwich CT, 1987. 7. Strauss A. L. et al. Chronic Illness and the Quality of Life. C. V. Mosby, St Louis, 1984. 8. Anderson R. and Bury M. (Eds) Living with Chronic
Illness: The Experience of Patients and Their Families.

Unwin Hyman, London, 1988.

9. Roth J. and Conrad P. (Eds) Research in the Sociology

of Health Care, Vol. 6. JAI Press, Greenwich CT, 1987.

10. Special Issue on Qualitative Research on Chronic

Illness. Sot. Sci. Med. 30, 11, 1990. 11. Lefley H. P. Culture and chronic mental illness. Hosp.
Communitv Psvchiat. 41. 277-286, 1990.

12. Opler M.- Some points of comparison and contrast

between the treatment of functional disorder by Apache shamans and modern psychiatric practice. Am. J. Psychiat. 92, 1371-1387. 1936. 13. Trostle J. A. Medical compliances as an idelogy. Sot. Sri. Med. 27, 1299-1308, 1988. 14. Bellisari A. and Owning C. F. Adaptive noncompliance with chest physiotherapy in cystic fibrosis. In Encounfers
with Biomedicine: Case Studies in Medical Anthropology

(Edited by Baer H. A.), pp. 229-247. Gordon Breach, New York, 1987. 15. Rice D. P. and LaPlante M. P. Chronic illness, disability, and increasing longevity. In The Economics and Ethics of Long-Term Care and Disability (Edited by Sullivan S. and Lewin M. E.). American Enterprise Institute for Public Policy Research, Washington, DC, 1988.