Chronic fatigue syndrome and fibromyalgia are characterized by being difficult to diagnose and having an elusive etiology and no clear-cut treatment strategy. The question of whether these illnesses are stigmatizing was investigated through interviews with 25 women with these illnesses. The women experienced stigmatization primarily before receiving a diagnosis, and the diffuse symptomatology associated with the illnesses were significant for stigmatization. Stigma consisted of questioning the veracity, morality, and accuracy of patient symptom descriptions and of psychologizingsymptoms. Coping with stigma was also explored and found to comprise both withdrawal and approach strategies, depending on the individual’s circumstances and goals.
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References
1.
Album, D. (1991). Sykdommers og medisinske spesialiteters prestisje [The prestige of diseases and medical specialities]. Nordisk Medicin, 106(8-9), 232-236.
2.
Ax, S. , Gregg, V. H., & Jones, D. (1997). Chronic fatigue syndrome: Sufferers’ evaluation of medical support. Journal of the Royal Society of Medicine, 90, 250-254.
3.
Blumer, H. (1969). Symbolic interactionism: Perspective and method. Englewood Cliffs, NJ: Prentice Hall.
4.
Bunting, S. M. (1996). Sources of stigma associated with women with HIV. Advances in Nursing Science, 19(2), 64-73.
5.
Charmaz, K. (1983). Loss of self: A fundamental form of suffering in the chronically ill. Sociology of Health and Illness, 5(2), 168-195.
6.
Conrad, P. (1987). The experience of illness: Recent and new directions. Research in the Sociology of Health Care, 6, 1-31.
7.
Cooper, L. (1997). Myalgic encephalomyelitis and the medical encounter. Sociology of Health & Illness, 19, 186-207.
8.
Coyle, J. (1999). Exploring the meaning of “dissatisfaction” with health care: The importance of “personal identity threat”. Sociology of Health & Illness, 21(1), 95-124.
9.
Evengård, B. , Schacterle, R. S., & Komaroff, A. L. (1999). Chronic fatigue syndrome: New insights and old ignorance. Journal of Internal Medicine, 246, 455-469.
10.
Field, D. (1976). The social definition of illness. In D. Tuckett (Ed.), An introduction to medical sociology (pp. 334-366). London: Tavistock.
11.
Fukuda, K. , Straus, S. E., Hickie, I., Sharpe, M. C., Dobbins, J. G., Komaroff, A., & International Chronic Fatigue Syndrome Study Group. (1994). The chronic fatigue syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine, 121, 953-959.
12.
Glaser, B. , & Strauss, A. (1967). The discovery of grounded theory: Strategies for qualitative research. Hawthorne, New York: Aldine.
13.
Goffman, E. (1959). The presentation of self in everyday life. New York: Anchor.
14.
Goffman, E. (1972). Stigma: Den avvikandes roll och identitet [Stigma: Notes on the management of spoiled identity]. Stockholm: Raben & Sjögren.
15.
Gullacksen, A.-C. (1998). När smärtan blir en del av livet. Livsomställningvid kronisk sjukdom och funktionshinder [When pain becomes a part of life: Readjusting life to chronic illness and disability]. Unpublished doctoral dissertation, Lund University, Sweden.
16.
Hellström, O. , Bullington, J., Karlsson, G., Lindqvist, P., & Mattsson, B. (1999). A phenomenological study of fibromyalgia: Patient perspectives. Scandinavian Journal of Primary Health Care, 17, 11-16.
17.
Henriksson, C. M. (1995). Living with continuous muscular pain: Patient perspectives. Part I: Encounters and consequences. Scandinavian Journal of Caring Sciences, 9(2), 67-76.
18.
Hopper, S. (1981). Diabetes as a stigmatized condition: The case of low-income clinic patients in the United States. Social Science & Medicine, 15B, 11-19.
19.
Hyman, M. D. (1971). The stigma of stroke: Its effects on performance during and after rehabilitation. Geriatrics, 26(5), 132-141.
20.
Johansson, E. E. , Hamberg, K., Lindgren, G., & Westman, G. (1996). “I’ve been crying my way”: Qualitative analysis of a group of female patients’ consultation experiences. Family Practice, 13, 498-503.
21.
Jones, E. E. , Farina, A., Hastorf, A. H., Markus, H., Miller, D. T., & Scott, R. A. (1984). Social stigma: The psychology of marked relationships. New York: Freeman.
22.
Kleinman, A. (1988). The illness narratives: Suffering, healing, and the human condition. New York: Basic Books.
23.
Komaroff, A. L. (1994). Clinical presentation and evaluation of fatigue and chronic fatigue syndrome. In S. E. Straus (Ed.), Chronic fatigue syndrome (pp. 61-84). New York: Marcel Dekker.
24.
Lazare, A. (1987). Shame and humiliation in the medical encounter. Archives of Internal Medicine, 147, 1653-1658.
25.
Lennon, M. C. , Link, B. G., Marbach, J. J., & Dohrenwend, B. P. (1989). The stigma of chronic facial pain and its impact on social relationships. Social Problems, 36(2), 117-134.
26.
Malterud, K. (1990). Allmennpraktikerens møte med kvinnelige pasienter [The encounter between the general practitioner and the female patients]. Bergen, Norway: Tano.
27.
Nørregaard, J. , Bülow, P. M., Prescott, E., Jacobsen, S., & Danneskiold-Samsøe, B. (1993). A four-year follow-up study in fibromyalgia: Relationship to chronic fatigue syndrome. Scandinavian Journal of Rheumatology, 22, 35-38.
Scambler, G. (1984). Perceiving and coping with stigmatizing illness. In R. Fitzpatrick, J. Hinton, S. Newman, G. Scambler, & J. Thompson (Eds.), The experience of illness (pp. 203-226). London: Tavistock.
30.
Scambler, G. , & Hopkins, A. (1986). Being epileptic: Coming to terms with stigma. Sociology of Health and Illness, 8, 26-43.
31.
Schneider, J. , & Conrad, P. (1980). In the closet with illness: Epilepsy, stigma potential and information control. Social problems, 28(1), 32-44.
32.
Söderberg, S. (1999). Women’s experiences of living with fibromyalgia: Struggling for dignity. Unpublished doctoral dissertation, Umeå University, Umeå, Sweden.
33.
Söderström, U. (1991). Maktförhållanden i patient-läkarrelationen [Power conditions in the patientdoctor relationship]. Socialmedicinsk tidskrift, 68(9-10), 434-437.
34.
Strauss, A. , & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park, CA: Sage.
35.
Wahl, O. F. (1999). Mental health consumers’ experience of stigma. Schizophrenia Bulletin, 25, 467-478.
36.
Ware, N. C. (1992). Suffering and the social construction of illness: The delegitimation of illness experience in chronic fatigue syndrome. Medical Anthropology Quarterly, 6, 347-361.
37.
Ware, N. C. (1993). Society, mind, and body in chronic fatigue syndrome: An anthropological view. Ciba Foundation Symposium, 173, 62-82.
38.
Ware, N. C. (1998). Sociomatics and illness course in chronic fatigue syndrome. Psychosomatic Medicine, 60, 394-401.
39.
Weitz, R. (1990). Living with the stigma of AIDS. Qualitative Sociology, 13(1), 23-38.
40.
White, K. P. , Speechley, M., Harth, M., & Østbye, T. (2000). Co-existence of chronic fatigue syndrome with fibromyalgia in the general population. A controlled study. Scandinavian Journal of Rheumatology, 29(1), 44-51.
41.
Williams, S. (1987). Goffman, interactionism, and the management of stigma in everyday life. In G. Scambler (Ed.), Sociological theory and medical sociology (pp. 134-164). London: Tavistock.
42.
Wolfe, F. , Smythe, H. A., Yunus, M. B., Bennett, R. M., Bombardier, C., Goldenberg, D. L., et al. (1990). The American college of rheumatology 1990 criteria for the classification of fibromyalgia: Report of the multicenter criteria committee. Arthritis and Rheumatism, 33, 160-172.
43.
Woodward, R. V. , Broom, D. H., & Legge, D. G. (1995). Diagnosis in chronic illness: Disabling or enabling—The case of chronic fatigue syndrome. Journal of the Royal Society of Medicine, 88, 325-329.
