The Social Course of Fibromyalgia: Resisting Processes of Marginalisation, 2022, Brown

Abstract

This sociological article reports an empirical study into the lived experience of fibromyalgia. It includes 28 participants (26 women, 2 men) with a formal diagnosis of fibromyalgia. Data collection consisted of the completion of an identity box project and subsequent interviews. Data analysis followed the principles of iterative, inductive, semantic thematic analysis, and led to the identification of four major themes: the role of the social in making sense of the experience, the process of redefining lifegoals, the refusal to accept fibromyalgia as a diagnosis, and the consideration of identifying as a patient. These themes in turn demonstrate four forms of resistance against processes of marginalisation amongst those who have been diagnosed with fibromyalgia: (1) the incorporation of societal expectations and norms into their life-stories; (2) the re-making the lifeworld at a cerebral level through redefining reality and creating a new, socially acceptable reality; (3) the active rejection of the fibromyalgia diagnosis; and (4) the employment of active and pro-active countermeasures to assuming the sick role.

Open access, https://www.mdpi.com/1660-4601/19/1/333/htm

 

The abstract's wording is a little misleading. Although the author states early on that fibro "is neither an illness nor a disease" (I would differ and say simply 'etiology{cause} unknown').

Still, the 26 women and 2 men, or at least some of them, were extensively quoted as to how the non-disease, non-illness affects them. Worth reading for that reason alone.

Edited to add: This is a strange article about the effect of the diagnosis of FM on academics (only). How they resisted the term fibromyalgia because of the stigma and prefer 'central sensitization' or 'chronic widespread pain'. Few of them had to stop working.