The social course of fibromyalgia: Resisting processes of marginalisation

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 identifi-cation 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.