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Contested illness, contested identity: How women with fibromyalgia construct legitimacy online

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  • Kerr, Jenna M.
  • DeMichelis, Carey

Abstract

This research explores the lived experiences of women with fibromyalgia (FM) and the various ways they go about legitimizing a contested medical condition. Through ethnographic observation in a private online community, “Fibro Women Canada,” and in-depth interviews with its members, we explore how women work to be seen as legitimate pain patients in the eyes of their healthcare providers. We argue that FM produces a dilemma of legitimacy, a dilemma of identity, and a dilemma of morality for its sufferers. In the face of these dilemmas, Fibro Women Canada functions as a backstage environment that supports two distinct, yet interwoven, forms of legitimacy building: (1) illness literacy, and (2) identity work. In particular, we attend to the moral stakes of seeking biomedical recognition, illuminating the every-day strategies that women use to construct themselves as deserving of care.

Suggested Citation

  • Kerr, Jenna M. & DeMichelis, Carey, 2025. "Contested illness, contested identity: How women with fibromyalgia construct legitimacy online," Social Science & Medicine, Elsevier, vol. 381(C).
    • Handle: RePEc:eee:socmed:v:381:y:2025:i:c:s0277953625005829
    DOI: 10.1016/j.socscimed.2025.118251
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    1. Fiona Webster & Kathleen Rice & Joel Katz & Onil Bhattacharyya & Craig Dale & Ross Upshur, 2019. "An ethnography of chronic pain management in primary care: The social organization of physicians’ work in the midst of the opioid crisis," PLOS ONE, Public Library of Science, vol. 14(5), pages 1-16, May.
    2. Barker, Kristin K., 2011. "Listening to Lyrica: contested illnesses and pharmaceutical determinism," Social Science & Medicine, Elsevier, vol. 73(6), pages 833-842, September.
    3. Richardson, Jane C. & Ong, Bie Nio & Sim, Julius, 2006. "Is chronic widespread pain biographically disruptive?," Social Science & Medicine, Elsevier, vol. 63(6), pages 1573-1585, September.
    4. Pryma, Jane, 2017. "“Even my sister says I'm acting like a crazy to get a check”: Race, gender, and moral boundary-work in women's claims of disabling chronic pain," Social Science & Medicine, Elsevier, vol. 181(C), pages 66-73.
    5. Werner, Anne & Isaksen, L.W.Lise Widding & Malterud, Kirsti, 2004. "'I am not the kind of woman who complains of everything': Illness stories on self and shame in women with chronic pain," Social Science & Medicine, Elsevier, vol. 59(5), pages 1035-1045, September.
    6. Werner, Anne & Malterud, Kirsti, 2003. "It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors," Social Science & Medicine, Elsevier, vol. 57(8), pages 1409-1419, October.
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    Cited by:

    1. Nezamdoust, Bita & Ruel, Erin, 2026. "Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome," Social Science & Medicine, Elsevier, vol. 388(C).

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