ME and its Discontents: Life Stories and Photo-Elicited Diaries of a Severe Chronic Illness

Myalgic Encephalomyelitis (ME) remains a controversial disease, shrouded in medical and social uncertainty. This thesis examines connections between language, space and representations of becoming diagnosed and living with the often severe effects of this chronic illness. Dominant medical and political institutions, often successful in funding, hold the power to drive the medical debates surrounding aetiology and treatment. As these institutions govern and wrangle over the ‘making’ of a definable truth, people are living with the ‘reality’ of illness. In order to address the issues of living with this chronic illness, this thesis examines 9 life stories and 8 subsequent Photo-Elicited Diaries of 2 males and 7 females diagnosed with ME (also known as Chronic Fatigue Syndrome).
This thesis adopts a transdisciplinary approach and employs critical discourse and narrative analyses to both the bio-political and socio-cultural contexts. A kaleidoscopic view was applied to examine the discursive, material and relational aspects of living with a particular chronic illness. This method identified issues of ‘doing’ illness whilst ‘being’ chronically ill. Taking such an approach exposed the power relations, social practices and subjective experiences of becoming and mastering illness, often within the enclosed spaces of homes/hospitals and house/bedbound. The findings reflected on the severe effects as a causal agent for displacing personal and social truths, for continually plugging in and out of social worlds and the conditions of possibilities for resisting and surviving chronic illness. By combining narrative and visual accounts the rich complexities of living with a severe chronic illness could be better explored.
This study advocates the benefits of combining spoken and visual experiences of illness for future studies and has the potential to impact approaches employed within the therapeutic setting. As the house/bedbound tend to remain the missing voices within medical and social research, this study joins an urgent call for research to focus not merely on disability issues, but impairments and the associated effects - relapsing, recovering and surviving chronic illness.