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Creating meaning in fibromyalgia syndrome

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  • Madden, Sue
  • Sim, Julius

Abstract

Gaining a diagnosis is considered to legitimate a person's illness, to both the self and the wider social world, while also giving hope that treatments, and possibly a cure, will be found. A further function of diagnosis from the patient's perspective is to give meaning to the illness experience, which is often uncertain and confusing. To do so, a diagnosis must itself have meaning. This paper explores the creation of meaning in a medically unexplained disorder, fibromyalgia syndrome (FMS). Semi-structured interviews, in which the diagnostic process was explored, were conducted with 17 people diagnosed with FMS in the United Kingdom, selected from a hospital database (16 women, 1 man). Documentary analysis was also undertaken on information available from support groups and health professionals. Although initially an acceptable diagnosis to sufferers, FMS was viewed as a mysterious label, which provided no meaning at the time of diagnosis. The sought information was accessed in an attempt to resolve its meaninglessness, but this proved problematic due to the ambiguous definition of FMS within the medical and support group literature, the invisible nature of the illness, and the lack of an environment where these uncertainties could be openly discussed. Informants varied in the degree of longer-term acceptance of a diagnosis of FMS, in relation to the concordance they achieved between the diagnosis and their experience of illness.

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  • Madden, Sue & Sim, Julius, 2006. "Creating meaning in fibromyalgia syndrome," Social Science & Medicine, Elsevier, vol. 63(11), pages 2962-2973, December.
  • Handle: RePEc:eee:socmed:v:63:y:2006:i:11:p:2962-2973
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    1. Peters, Sarah & Stanley, Ian & Rose, Michael & Salmon, Peter, 0. "Patients with medically unexplained symptoms: Sources of patients' authority and implications for demands on medical care," Social Science & Medicine, Elsevier, vol. 46(4-5), pages 559-565, February.
    2. Garro, Linda C., 1994. "Narrative representations of chronic illness experience: cultural models of illness, mind, and body in stories concerning the Temporomandibular Joint (TMJ)," Social Science & Medicine, Elsevier, vol. 38(6), pages 775-788, March.
    3. Adams, Stephanie & Pill, Roisin & Jones, Alan, 1997. "Medication, chronic illness and identity: The perspective of people with asthma," Social Science & Medicine, Elsevier, vol. 45(2), pages 189-201, July.
    4. Stewart, David C. & Sullivan, Thomas J., 1982. "Illness behavior and the sick role in chronic disease : The case of multiple sclerosis," Social Science & Medicine, Elsevier, vol. 16(15), pages 1397-1404, January.
    5. Meile, Richard L., 1986. "Pathways to patienthood: Sick role and labeling perspectives," Social Science & Medicine, Elsevier, vol. 22(1), pages 35-40, January.
    6. Åsbring, Pia & Närvänen, Anna-Liisa, 2003. "Ideal versus reality: physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia," Social Science & Medicine, Elsevier, vol. 57(4), pages 711-720, August.
    7. Arksey, Hilary & Sloper, Patricia, 1999. "Disputed diagnoses: the cases of RSI and childhood cancer," Social Science & Medicine, Elsevier, vol. 49(4), pages 483-497, August.
    8. Petchey, Roland & Farnsworth, Bill & Williams, Jacky, 2000. "'The last resort would be to go to the GP'. Understanding the perceptions and use of general practitioner services among people with HIV/AIDS," Social Science & Medicine, Elsevier, vol. 50(2), pages 233-245, January.
    9. U. Kelle, 1997. "Theory Building in Qualitative Research and Computer Programs for the Management of Textual Data," Sociological Research Online, , vol. 2(2), pages 10-22, June.
    10. O'Flynn, Norma & Britten, Nicky, 2000. "Menorrhagia in general practice -- disease or illness," Social Science & Medicine, Elsevier, vol. 50(5), pages 651-661, March.
    11. Molleman, Eric & Krabbendam, Pieter J. & Annyas, Albertus A. & Koops, Heimen Schraffordt & Sleijfer, Dirk Th. & Vermey, Albert, 1984. "The significance of the doctor-patient relationship in coping with cancer," Social Science & Medicine, Elsevier, vol. 18(6), pages 475-480, January.
    12. Blaxter, Mildred, 1983. "The causes of disease : Women talking," Social Science & Medicine, Elsevier, vol. 17(2), pages 59-69, January.
    13. Glenton, Claire, 2003. "Chronic back pain sufferers--striving for the sick role," Social Science & Medicine, Elsevier, vol. 57(11), pages 2243-2252, December.
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    5. Nicole Brown, 2021. "The Social Course of Fibromyalgia: Resisting Processes of Marginalisation," IJERPH, MDPI, vol. 19(1), pages 1-13, December.
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    7. Stockl, Andrea, 2007. "Complex syndromes, ambivalent diagnosis, and existential uncertainty: The case of Systemic Lupus Erythematosus (SLE)," Social Science & Medicine, Elsevier, vol. 65(7), pages 1549-1559, October.
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    9. Sim, Julius & Madden, Sue, 2008. "Illness experience in fibromyalgia syndrome: A metasynthesis of qualitative studies," Social Science & Medicine, Elsevier, vol. 67(1), pages 57-67, July.
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    11. Lonardi, Cristina, 2007. "The passing dilemma in socially invisible diseases: Narratives on chronic headache," Social Science & Medicine, Elsevier, vol. 65(8), pages 1619-1629, October.

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