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The radicalized self: the impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome

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  • Clarke, Juanne N.
  • James, Susan

Abstract

Chronic fatigue syndrome (CFS) is a relatively new disease that is difficult to diagnose. It is also a contested disease immersed in dispute about whether it is a physical or psychiatric reality. Sufferers often claim to experience not only the physical challenges of the disease, and these can be extensive, but also, initially, the anomie of suffering from a condition whose very reality is debated both in the medical and in the wider communities. Theories of self in illness emphasize how people who are diagnosed as chronically ill work hard as they seek to maintain previous, or to develop supernormal, selves. Such goals are cast in a critical light by Foucault's notion of the technologies of self in the context of circulating neo-liberal discourses. As people with CFS, lacking an uncontested medical diagnosis, search for meaningful self-identities, they resist previously available discourses to take up an alternative discourse, one that we call radicalized selves. This paper raises questions about the constraints and liberties, power and powerlessness associated with a clear and undisputed medical diagnosis. It suggests a model of the self in chronic illness that considers not only changes in body and biography but also the availability of an uncontested diagnosis.

Suggested Citation

  • Clarke, Juanne N. & James, Susan, 2003. "The radicalized self: the impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome," Social Science & Medicine, Elsevier, vol. 57(8), pages 1387-1395, October.
  • Handle: RePEc:eee:socmed:v:57:y:2003:i:8:p:1387-1395
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    Citations

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    Cited by:

    1. Travers, Michele Kerry & Lawler, Jocalyn, 2008. "Self within a climate of contention: Experiences of chronic fatigue syndrome," Social Science & Medicine, Elsevier, vol. 66(2), pages 315-326, January.
    2. Crooks, Valorie A., 2007. "Exploring the altered daily geographies and lifeworlds of women living with fibromyalgia syndrome: A mixed-method approach," Social Science & Medicine, Elsevier, vol. 64(3), pages 577-588, February.
    3. Schaepe, Karen Sue, 2011. "Bad news and first impressions: Patient and family caregiver accounts of learning the cancer diagnosis," Social Science & Medicine, Elsevier, vol. 73(6), pages 912-921, September.
    4. Ebeling, Mary, 2011. "'Get with the Program!': Pharmaceutical marketing, symptom checklists and self-diagnosis," Social Science & Medicine, Elsevier, vol. 73(6), pages 825-832, September.
    5. Whitehead, Lisa Claire, 2006. "Quest, chaos and restitution: Living with chronic fatigue syndrome/myalgic encephalomyelitis," Social Science & Medicine, Elsevier, vol. 62(9), pages 2236-2245, May.
    6. Phillips, Tarryn, 2012. "Repressive authenticity in the quest for legitimacy: Surveillance and the contested illness lawsuit," Social Science & Medicine, Elsevier, vol. 75(10), pages 1762-1768.
    7. Dumit, Joseph, 2006. "Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses," Social Science & Medicine, Elsevier, vol. 62(3), pages 577-590, February.
    8. Eva Brink, 2009. "Adaptation Positions and Behavior Among Post—Myocardial Infarction Patients," Clinical Nursing Research, , vol. 18(2), pages 119-135, May.
    9. Davidson, Joyce, 2005. "Contesting stigma and contested emotions: Personal experience and public perception of specific phobias," Social Science & Medicine, Elsevier, vol. 61(10), pages 2155-2164, November.
    10. Aujoulat, Isabelle & Marcolongo, Renzo & Bonadiman, Leopoldo & Deccache, Alain, 2008. "Reconsidering patient empowerment in chronic illness: A critique of models of self-efficacy and bodily control," Social Science & Medicine, Elsevier, vol. 66(5), pages 1228-1239, March.
    11. Beard, Renée L. & Fox, Patrick J., 2008. "Resisting social disenfranchisement: Negotiating collective identities and everyday life with memory loss," Social Science & Medicine, Elsevier, vol. 66(7), pages 1509-1520, April.

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