The Social Course of Fibromyalgia: Resisting Processes of Marginalisation.

Nicole Brown

doi:10.3390/ijerph19010333

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.

Highlights

IntroductionFibromyalgia is characterised by chronic, wide-spread pain, fatigue, sleep disturbances, cognitive dysfunctions, often described as “brain fog” or “fibro fog”, increased sensitivity and psychological disorders [1] and it is associated with a wide range of somatic symptoms [2]
This article pursues two aims: firstly, to highlight the difficulties of navigating an invisible and fluctuating chronic condition in an environment that emphasises productivity and excellence; and secondly, to shed light on strategies and techniques individuals employ to negotiate their lives with fibromyalgia and counteract marginalisation
The overarching aim of the research was to explore the relationship between fibromyalgia as a contested condition and the construction of academic identity, in particular in view of the cognitive dysfunctions linked to fibromyalgia that would potentially be at odds with the cerebral and scholarly work academics are expected to undertake; to offer insights into academia as a workplace; to identify how this particular workplace may foster or potentially cause distress that becomes physically manifested in a disabling condition; and to investigate how individuals counter processes of marginalisation within this particular working environment

Summary

Introduction

Fibromyalgia is characterised by chronic, wide-spread pain, fatigue, sleep disturbances, cognitive dysfunctions, often described as “brain fog” or “fibro fog”, increased sensitivity and psychological disorders [1] and it is associated with a wide range of somatic symptoms [2]. The lack of a definite process for diagnosis and the variability of the condition make it a doubtful and contested condition [3,4,5,6] with nowadays largely two opposing camps amongst the medical professionals: those who believe that there is an organic and physiological cause to the condition and who continue to search for underlying triggers or biomarkers [2,7]

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