Telling the untellable stories of women living with irritable bowel syndrome (IBS)

Lister, Devina (2017) Telling the untellable stories of women living with irritable bowel syndrome (IBS). Doctoral thesis (PhD), Manchester Metropolitan University.

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Abstract

Irritable Bowel Syndrome (IBS) is a common, chronic bowel illness involving the presence of unpleasant bodily sensations and pain. In the current research the ‘stories’ women living with IBS had to tell were studied as part of a multi-layered narrative ‘bricolage’ (Kincholoe, 1991) analysis. The language used to discuss women living with IBS in a primarily scientific and deductive literature, was argued to be problematic, and reinforce gendered notions of IBS as a ‘women’s disease’ (Dixon-Woods and Critchley, 2008). Informed by the researcher’s positioning as a feminist and a woman living with IBS based in the UK, this feminist-narrative study was carried out and placed women’s standpoints (Harding, 1991) at the forefront of IBS research. Participants who volunteered to take part were women living with IBS and who were based in ‘Western’ countries, such as the UK, USA and Australia. Each of the participants completed a diary for one-week, completing at least one entry per day by writing or drawing about what was meaningful to them, reflecting upon their everyday lives and experiences of IBS and illness. Diaries were used a means of conducting narrative inquiry, which takes human experiences seriously as the phenomena of interest (Clandinin and Connelly, 2006). The diary method also facilitated adopting a stance on illness as ‘embodied’ experiences, transcending a divide between the mind and body (see for example, Bendelow, 2009). The research aims were to explore stories the women had to tell about their lives, whilst also considering if Western ‘cultural scripts’ (Miller, 2005) of femininities and of chronic illness informed the personal story constructions. The interpretations presented how the diverse and nuanced accounts explored embodied experiences of bodily shame, suffering, hope to ‘be positive’, and efforts to keep going when faced with the challenges of living with a chronic illness. Consistent with past literature (Björkman et al., 2013) illness was emplotted into the women’s stories in gendered and culturally meaningful ways, such as by drawing upon narrow Western feminine body-ideals. Whilst the women could not contain their ‘leaky bodies’ (Shildrick, 1994), this did not prevent them constructing stories about trying to keep up an appearance of normalcy and able-bodiedness. In addition to providing valuable new knowledge about stories of IBS, illness and gendered embodiment, this research showed the promise of adopting a creative and playful approach to conducting feminist research. The thesis itself was conceptualised by the ‘insider’ researcher as having been symbolic of what it was like to complete a PhD when experiencing intermittent illness. Poetry-as-method thus provided a valuable vehicle for the research during the interpretative process, but also in realising the potentials of artful research in creating space for innovative and politicised social action.