'It's All Very Blurry' : Exploring the Messy Realities of Living with Hepatitis C.
Across the UK, 200,000 - 500,000 people live with chronic hepatitis C. Spread through blood to blood contact, the main route of transmission in the UK is via sharing injecting drug use equipment. The negative perceptions which accompany this, coupled with the hidden nature of the illness and the slow course of the infection, have enacted and materialised hepatitis C as a low priority for services and policy. There are treatments which can eradicate the virus, though treatment can exacerbate and produce severe impairment effects and disablism. Given the lack of attention afforded to hepatitis C experience in the UK, at the heart of this PhD study are 21 people with the virus, who participated in qualitative interviews. Findings are structured around topics currently under addressed in UK literature; including the period following diagnosis, the post treatment experience, the impact on employment and the experience of claiming social security benefits. The accounts generated in these interviews were much messier than anticipated. The concept of 'mess' has emerged as central to the constitution of this thesis and, as I show, central to responding to the needs of those living with hepatitis C. The practical implications and manifestations of this messiness are theorised using the concepts of metaphor, liminality, pharmakon and pharmakos. The thesis also applies insights from the field of disability studies, a discipline which has not been used extensively to theorise the experiences of living with hepatitis C. The thesis engages in an important and timely discussion of the everyday realities of living with hepatitis C and the role of professional health and social care support. Particularly given the contingent nature of living with the virus and the state of flux participants found (and find) themselves in, due to public service reforms and new treatment development. It shows that despite the current (and increasing) dominance of medical responses to hepatitis C, there is an urgent need for other professionals, including social work and those working in disability studies, to address hepatitis C.
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