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

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: Biomedical recognition; Digital ethnography; Epistemic injustice; Feminist bioethics; Fibromyalgia; Legitimacy; Moral repair.