Families' Understandings of their Experiences of Fibromyalgia

Abstract

In this thesis I explore families’ understandings of their experiences with the chronic and contested illness fibromyalgia. My research is informed by an interpretivist epistemology and draws together literature and theories from the sociology of health and illness, disability studies/studies in ableism, and UK family sociology. I thematically analysed qualitative semi-structured interviews with 17 families in the UK to explore their understandings of their experiences with fibromyalgia. I argue Experiential Illness Knowledge (EIK) is an essential concept to help families understand and navigate their experiences of fibromyalgia. Informed by the aforementioned epistemology, literature, and theories, I argue that families’ understandings of their experiences of fibromyalgia cannot just be understood as disruptions to one’s self; but rather as disruptions to multiple relational we. My findings support wider literature of care as an ordinary complexity within families’ lives. However, I highlight that underlying families’ daily understandings and experiences of fibromyalgia is a wider context of social oppression that devalues the EIK they use to navigate their daily lives over that of biomedical knowledge that can impact families’ access to wider support inside and outside of the medical profession. I showed how families were impacted emotionally and relationally by their perceptions of the multiple ableist norms of family, illness, of being a worker etc. that characterised their experiences, and wider policy contexts that they live within. Additionally, I demonstrate how fibromyalgia and wider ableist structures within society impacted families’ emotional and relational histories and contemporary family practices. In drawing these themes together I argue families understood their experiences and relational selves as being impacted not only by fibromyalgia’s impairment effects, but also by the wider ableist norms and societal attitudes that produced the conditions for their marginalisation to occur.