Shamed and stigmatised: Narratives of complex, poorly-understood illness

Abstract

A significant proportion of symptoms remain unexplained. In these cases, medical testing and imaging is carried out, but no underlying disease process is revealed. These conditions are complex and poorly-understood; they are often described in the clinical literature as ‘medically unexplained’. This is a thesis about the stories we tell about illnesses we do not (yet) understand, how these stories shame and stigmatise, and the impacts of this shaming and stigmatisation. At its centre are the first-person narratives told by women who live with these complex, poorly-understood conditions. To permit a deeper analysis of shame and shaming, I bring together two very different means of storytelling: the contemporary illness memoir, and the semi-structured interview. These are accounts of lives restricted by (often severe) symptoms, as well as of an additional burden of suffering: of feeling as though the reality of their suffering has been hidden; of being made to feel as though they are to blame for their own illness; and of feeling betrayed by institutions they once believed would support them. My analysis reveals how these accounts are themselves told in dialogue with other stories – told within academic publications, entangled with culturally-embedded tales about women and their bodies – which position these particular kinds of illnesses as ‘imaginary’, or as ‘real but reversible’.
In its richly-interdisciplinary methodology and its deep attention to illness experience, this thesis situates itself firmly within the critical medical humanities. Yet it is also a call to the field: to look both outwards and inwards; to become self-critical. Throughout, my analysis speaks to the importance of looking at the systemic as well as at the individual: at shaming, as well as at shame; and at the narratives told about particular kinds of illnesses, as well as at the narratives ill people tell about their own experiences.