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

Jenna M. Kerr and Carey DeMichelis

Social Science & Medicine, 2025, vol. 381, issue C

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.

Keywords: Fibromyalgia; Legitimacy; Digital ethnography; Feminist bioethics; Biomedical recognition; Epistemic injustice; Moral repair (search for similar items in EconPapers)
Date: 2025
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DOI: 10.1016/j.socscimed.2025.118251

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