The authors interviewed 12 women diagnosed with chronic fatigue syndrome and 13 with fibromyalgia with the aim of determining the strategies they perceive themselves as using to gain control over their situation during the health care process. The results highlight various strategies that the women report applying to find a way of managing the illness and to influence caregivers. They describe, for example, how they try to gain control over their situation by acquiring knowledge about the illness. The women also describe various power strategies they use in their interaction with the caregivers to take command of their situation, namely exiting, noncompliance, confrontation, persuasion/insistence, making demands, and demonstrative distancing.
Get full access to this article
View all access options for this article.
References
1.
Ainsworth-Vaughn, N. (1998). Claiming power in the doctor-patient talk. New York: Oxford University Press.
2.
Albinsson, G., & Arnesson, K. (1997). Makt och motmakt: En studie av kvinnor i vårdhierarkin [Power and counter-power: A study of women in the health care hierarchy]. Lund, Sweden: University of Lund.
3.
Anderson, J. M. (1996). Empowering patients: Issues and strategies. Social Science & Medicine, 43(5), 697-705.
4.
Åsbring, P. (2001). Chronic illness—A disruption in life: Identity-transformation among women with chronic fatigue syndrome and fibromyalgia. Journal of Advanced Nursing, 34(3), 312-319.
5.
Åsbring, P., & Närvänen, A.-L. (2002). Women’s experiences of stigma: The case of chronic fatigue syndrome and fibromyalgia. Qualitative Health Research, 12, 148-160.
6.
Åsbring, P. E., & Närvänen, A.-L. (2003). Ideal versus reality: Physicians’ perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia. Social Science & Medicine, 57, 711-720.
7.
Beisecker, A. (1990). Patient power in doctor-patient communication: What do we know? Health Communication, 2(2), 105-122.
8.
Bombardier, C. H., & Buchwald, D. (1996). Chronic fatigue, chronic fatigue syndrome, and fibromyalgia: Disability and health-care use. Medical Care, 34(9), 924-930.
9.
Botelho, R. J. (1992). A negotiation model for the doctor-patient relationship. Family Practice, 9(2), 210-218.
Bury, M. (1991). The sociology of chronic illness: A review of research and prospects. Sociology of Health and Illness, 13, 451-468.
12.
Clarke, J. (2000). The search for legitimacy and the “expertization” of the lay person: The case of chronic fatigue syndrome. Social Work in Health Care, 30(3), 73-93.
13.
Conrad, P. (1985). The meaning of medications: another look at compliance. Social Science & Medicine, 20(1), 29-37.
14.
Conrad, P. (1992). Medicalization and social control. Annual Review Sociology, 18, 209-232.
15.
Cooper, L. (1997). Myalgic encephalomyelitis and the medical encounter. Sociology of Health and Illness, 19(2), 186-207.
16.
Corbin, J., & Strauss, A. (1988). Unending work and care: Managing chronic illness at home. San Francisco: Jossey-Bass.
17.
Coyle, J. (1999). Exploring the meaning of “dissatisfaction”with health care: The importance of “personal identity threat”. Sociology of Health and Illness, 21(1), 95-124.
18.
Deale, A., & Wessely, S. (2001). Patients’ perceptions of medical care in chronic fatigue syndrome. Social Science & Medicine, 52, 1859-1864.
19.
Fitzgerald Miller, J. (1992). Coping with chronic illness: Overcoming powerlessness (2nd ed.). Philadelphia: F. A. Davis.
20.
Freidson, E. (1961). Patients’ views of medical practice. New York: Russel Sage Foundation.
21.
Freund, P., & McGuire, M. (1999). Health, illness, and the social body: A critical sociology (3rd ed.). New Jersey: Prentice Hall.
22.
Fukuda, K., Straus, S. E., Hickie, I., Sharpe, M., Dobbins, J., Komaroff, A., & the International Chronic Fatigue Syndrome Study Group. (1994). The chronic fatigue syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine, 121(12), 953-959.
23.
Giddens, A. (1991). Modernity and self-identity: Self and society in the late modern age. Cambridge, UK: Polity.
24.
Glaser, B., & Strauss, A. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine de Gruyter.
25.
Hammarström, A. (1997). “Det är bara psykiskt”: Om konstruktioner av kön i mötet mellan patient och läkare [“It’s only psychological”: Constructions about gender in the encounter between patient and doctor]. In G. Nordborg, (Ed.), Makt och kön [Power and gender] (pp. 111-129). Stockholm, Sweden: Brutus Östlings Bokförlag.
26.
Haug, M. R., & Lavin, B. (1979). Public challenge of physician authority. Medical Care, 17(8), 844-858.
27.
Haug, M. R., & Lavin, B. (1983). Consumerism in medicine: Challenging physician authority. Beverly Hills, CA: Sage.
28.
Hayes-Bautista, D. E. (1976). Modifying the treatment: Patient compliance, patient control and medical care. Social Science & Medicine, 10, 233-238.
29.
Hydén, L.-C.,& Sachs, L. (1998). Suffering, hope and diagnosis: On the negotiation of chronic fatigue syndrome. Health, 2(2), 175-193.
30.
Jerret, M. D., & Costello, E. A. (1996). Gaining control: Parents’ experiences of accommodating children’s asthma. Clinical Nursing Research, 5(3), 294-308.
31.
Johansson, 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(6), 498-502.
32.
Komaroff, A. (1994). Clinical presentation and evaluation of fatigue and chronic fatigue syndrome. In S. Straus (Ed.), Chronic fatigue syndrome (pp. 61-84). New York: Marcel Dekker.
33.
Lazare, A., Eisenthal, S., Frank, A., & Stoeckle, J. D. (1976). Studies on a negotiated approach to patienthood. In E. B. Gallagher (Ed.), The doctor-patient relationship in the changing health scene(pp. 119-139). Washington, DC: Department of Health, Education, and Welfare, National Institutes of Health.
34.
Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal and coping. New York: Springer.
35.
Lowry, D. A. (1998). Issues of non-compliance in mental health. Journal of Advanced Nursing, 28(2), 280-287.
36.
Malterud, K. (1987). Illness and disease in female patients. Scandinavian Journal of Primary Health Care, 5, 205-209.
37.
Malterud, K. (1993). Strategies for empowering women’s voices in the medical culture. Health Care for Women International, 14, 365-373.
38.
Mathiesen, T. (1982). Makt och motmakt [Power and counter-power]. Göteborg, Sweden: Bokförlaget Korpen.
39.
Milliken, P. J., & Northcott, H. C. (1996). Seeking validation: Hypothyroidism and the chronic illness trajectory. Qualitative Health Research, 6, 202-223.
40.
Muir-Cochrane, E. (2000). The context of care: Issues of power and control between patients and community mental health nurses. International Journal of Nursing Practice, 6, 292-299.
41.
Närvänen, A.-L. (1994). Temporalitet och social ordning [Temporality and social order]. Unpublished doctoral dissertation, University of Linköping, Sweden.
Perinbanayagam, R. S. (1974). The definition of the situation: An analysis of the ethnomethodological and dramaturgical view. Sociological Quarterly, 15, 521-541.
44.
Peters, S., Stanley, I., Rose, M., & Salmon, P. (1998). Patients with medically unexplained symptoms: Sources of patients’ authority and implications for demands on medical care. Social Science & Medicine, 46, 559-565.
45.
Pierce, P. F. (1996). When the patient chooses: Describing unaided decisions in health care. Human Factors, 38(2), 278-287.
46.
Pinder, R. (1990). The management of chronic illness: Patient and doctor perspectives on Parkinson’s disease. London: Macmillan.
47.
Playle, J. F., & Keeley, P. (1998). Non-compliance and professional power. Journal of Advanced Nursing, 27, 304-311.
48.
Radley, A. (1994). Making sense of illness: The social psychology of health and disease. London: Sage.
49.
Sätterlund Larsson, U. (1989). Being involved: Patient participation in health care. Unpublished doctoral dissertation, University of Linköping, Sweden.
50.
Scheff, T. J. (1987). Negotiating reality: Notes on power in the assessment of responsibility. In J. D. Stoeckle (Ed.), Encounters between patients and doctors (pp. 193-213). Cambridge, MA: MIT Press.
51.
Skau, G. M. (1993). Mellan makt och hjälp: Förhållandet mellan klient och hjälpare i ett samhällsvetenskapligt perspektiv [Between power and help: The relationship between client and helper from a social science perspective]. Stockholm, Sweden: Liber.
52.
Steinholtz Ekecrantz, L. (1995). Patienternas psykiatri: En studie av institutionella erfarenheter [Patients’ psychiatry. A study of institutional experiences]. Stockholm, Sweden: Carlssons Bokförlag.
53.
Stimson, G., & Webb, B. (1973). Going to see the doctor: The consultation process in general practice. London: Routledge Kegan Paul.
54.
Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park, CA: Sage.
55.
Strauss, A., Corbin, J., Fagerhaugh, S., Glaser, B., Maines, D., Suczek, B., et al. (1984). Chronic illness and the quality of life (2nd ed.). St. Louis, MO: C. V. Mosby.
56.
Tang, S., & Anderson, J. M. (1999). Human agency and the process of healing: Lessons learned from women living with a chronic illness—“Re-writing the expert”. Nursing Inquiry, 6, 83-93.
57.
Wentworth, W. M. (1980). Context and understanding: An inquiry into socialization theory. New York: Elsevier.
58.
Wolfe, F., Smythe, H. A., Yunus, M. B., Bennett, R. M., Bombardier, C., Goldenberg, D. L., et al. (1990). The American College of Rheumatology 1990criteria for the classification of fibromyalgia: Report of the Multicenter Criteria Committee. Arthritis and Rheumatism, 33(2), 160-172.
