Physical pain, psychological distress and the deleterious effects of medical procedures all cause the chronically ill to suffer as they experience their illnesses. However, a narrow medicalized view of suffering, solely defined as physical discomfort, ignores or minimizes the broader significance of the suffering experienced by debilitated chronically ill adults. A fundamental form of that suffering is the loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones. As a result of their illnesses, these individuals suffer from (1) leading restricted lives, (2) experiencing social isolation, (3) being discredited and (4) burdening others. Each of these four sources of suffering is analysed in relation to its effects on the consciousness of the ill person. The data are drawn from a qualitative study of 57 chronically ill persons with varied diagnoses.
From my studies of chronic illness, I have come to the position that there is an ‘American Way’ of experiencing and handling illness, as analogous to Jessica Mitford's argument of an American way of managing (and not managing) death. I expand upon this point in my earlier paper, ‘Ideologies and the politics of constructing identity: the subjective experience of the chronically ill’, paper given at the Meetings of the Society for the Study of Social Problems, New York, 31 August, 1976. Compare with J. Mitford, The American Way of Death, New York, Simon & Schuster, 1963.
K. Charmaz, 1976, op. cit.
K. Charmaz, The Social Reality of Death, Reading, Mass., Addison-Wesley, 1980a. My argument does not deny that people from other cultures may share markedly similar values about managing chronic illness. Rather, I limit my observations to the data which I have gathered for this and related work. Surely some parallels can be made. If, for example, Kafka's work The Metamorphosis can be taken as a metaphor for cancer as Shlain takes it, that provides one parallel between American and Russian ways of handling disease; others may be observed in Solzhenitsyn's Cancer Ward and Tolstoy's Ivan Ilyich. See F. Kafka, The Metamorphosis, New York, Schocken, 1968; L. Shlain, ‘Cancer is not a four-letter word’, in C. Garfield, Stress and Survival, St. Louis, C.V. Mosby, 1979, pp. 175–85; A. Solzhenitsyn, Cancer Ward, New York, Bantam, 1969; L. Tolstoy, The Death of Ivan Ilyich, New York, Signet Classics, 1960.
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K. Charmaz, 1976, op. cit.
K. Charmaz, The social construction of self-pity in the chronically ill’ in N.K. Denzin, Studies in Symbolic Interaction, vol. 3, Greenwich, Conn., Jai Press, 1980b, pp. 123–44.
G.H. Mead, Mind, Self and Society, Chicago, University of Chicago Press, 1934.
P.M. Strong, 1979, op. cit.
T. Parsons and R. Fox, op. cit. See also A. Oakley, The family, marriage and its relationship to illness’, in D. Tuckett, An Introduction to Medical Sociology, London, Tavistock Publications, 1976, pp. 74–109.
. A multiple paradigm approach to the sociology of medicine, health and illness’, Sociology of Health and Illness, vol. 3 (1981), pp. 89–103., ‘
B.G. Glaser and A.L. Strauss, The Discovery of Grounded Theory, Chicago, Aldine, 1967.
B.G. Glaser, Theoretical Sensitivity, Mill Valley, Ca., Sociology Press, 1978.
M. Davis, Living with Multiple Sclerosis, Springfield, Ill., Charles C. Thomas, 1973.
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A.L. Strauss and B.C. Glaser, Chronic Illness and the Quality of Life, St. Louis, C.V. Mosby, 1975.
B. Zilbergeld, ‘Sex and serious illness’, in C. Garfield, Stress and Survival, St. Louis, C.V. Mosby, 1979, pp. 236–242.
Some ill persons do try to restructure events to fit themselves, instead of altering themselves to fit events. Unfortunately, their attempts may be met with resistance. A few years ago, for example, a middle-aged man who had chronic pain attended my class in health and illness. Since he could not tolerate sitting for more than a half hour or so, he sat behind most of the seminar students and occasionally got up, stretched his stiff leg and walked back and forth for a few seconds. Much to my chagrin, I subsequently overheard several students commenting negatively on his actions. One student said, Well, I really wish he'd just leave if he has to get up.’ Her response was especially disconcerting in this class where one might hope that students could appreciate innovative ways of managing a painful physical condition and ordinary involvements simultaneously.
L. Reif, 1973, op. cit.
A.L. Strauss and B.G. Glaser, 1975, op. cit.
. Everyday illness behavior: A situational approach to health status deviations’, Social Science and Medicine, vol. 13 A (1979), pp. 397–404., ‘
E. Goffman, Stigma, Englewood Cliffs, N J., Prentice-Hall, 1964.
S. Macintyre and D. Oldman, ‘Coping with migraine’, in A. Davis and G. Horo-bin, Medical Encounters: The Experience of Illness and Treatment, London, Croom Helm, 1977, pp. 55–71.
S.L. Star, ‘The social psychology of chronic migraine’, unpublished paper, University of California, San Francisco, 1981.
I do not wish to imply that those who have constricted concerns cannot at some point use their experiences to learn about themselves and the human condition. I do wish to point out, though, that the kind of consuming consciousness I describe later does lead to a loss of self. The young man quoted provides one case example of a person whose life was almost totally restricted by his marked disability and whose consciousness was consumed by the panic he felt about swallowing. Yet later, he felt forced to deal with his fear and because his first wife left him and he had relied on her, he gradually taught himself how to become more independent. The combination of capturing his fear and becoming more independent opened his world so his life became much less restricted. For further accounts of restricted lives due to encompassing pain and discomfort see S.Y. Fagerhaugh and A.L. Strauss, Politics of Pain Management, Reading, Mass., Addison-Wesley, 1977, and S.L. Star, op. cit.
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L. Shlain, 1979, op. cit.
R.T. Smith and L. Midanik, The effects of social resources on recovery and perceived sense of control among the disabled’, Sociology of Health and Illness, vol. 2 (1980), pp. 48–63. The relationship in the kinship network is pivotal for the extent and kind of care provided. Generally, wives provided continuous support and care, even though I saw several who did not know how they would continue. Mothers gave care to adult daughters and adult daughters cared for parents. The sibling tie was weaker. These chronically ill persons typically did not feel that they could call upon siblings, as they were ‘involved in their own lives’ and they did not feel sufficiently ‘close’ to them to do so. As crises continue, ill persons may evaluate what requests they can properly make; caregivers evaluate what they can give their ill relatives while simultaneously managing their ordinary affairs. Because many of the women were single or divorced, I did not have ample opportunity to see if husbands provided the same kinds of involvements. While several married women expressed fear of greater impairment since their husbands did not like ‘sick people’, others reported that their husbands were exceedingly helpful, supportive and protective. Only in one case did I find a man who became the primary caregiver to parents. He was twice divorced, retired from the military and saw himself as more available and mobile than his sisters. Of the adult men I interviewed most received care from wives with the exception of a single man who preferred to receive emotional support from friends rather than his 80-year-old aunt and uncle, his only living relatives. Since friends systematically let him down, he was left primarily with what support was given by treatment staff. See also A. Oakley, 1976, op. cit.
K. Charmaz, 1980a, op. cit.
K. Charmaz, 1980b, op. cit.
E. Goffman, 1964, op. cit.
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J. Schneider and P. Conrad, 1981, op. cit.
T. Parsons and R. Fox, 1952, op. cit.
R. Jobling, ‘Learning to live with it: An account of a career of chronic dermatological illness and patienthood’, in A. Davis and G. Horobin, Medical Encounters, The Experience of Illness and Treatment, London, Croom Helm, 1977, pp. 72–86.
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M. Siegler and H. Osmond, ‘The sick role revisited’, in G.L. Albrecht and P.C. Higgins, Health, Illness and Medicine, Chicago, Rand McNally, 1979, pp. 146–66.
M.C. Knudson-Cooper, 1981, op. cit.
K. Charmaz, 1980b, op. cit.
T.E. Levitin, ‘Deviants as active participants in the labeling process: The visibly handicapped’, in G.L. Albrecht and P.C. Higgins, Health, Illness and Medicine, Chicago, Rand McNally, 1979, pp. 217–27.
S. Hopper, 1981, op. cit.
In this case, illness floods identity. The ill person has essentially lost the ability to minimize his or her physical condition. It intrudes upon their lives in visible ways and upon the lives of their intimates. For a description of a condition which can more readily be hidden, see In the closet with illness: Epilepsy, stigma potential and information control’, Social Problems, vol. 28 (1980), pp. 32–44.and , ‘