‘Reimagining a self’: an evocative autoethnography of living alongside Myalgic Encephalomyelitis (ME)

This doctoral thesis research aims to explore and explain the day to day realities of living long term with Myalgic Encephalomyelitis (ME). ME is an acquired complex disorder characterised by a variety of symptoms affecting multiple systems of the body. Marked fatigue and weakness, sickness, cognitive dysfunction and symptom flare-up can follow any physical or cognitive exertion. ME is a chronic and disabling disorder and severe or moderately severe cases can leave patients bed or house bound. It is estimated that there are 12,000 people with ME in Ireland and an estimated 17 to 24 million sufferers worldwide. Despite this there is a dearth of research on the experience of living with ME. I have lived with moderately severe ME for the last 16 years. Utilising autoethnography as a methodology and drawing on multidisciplinary social science theory, I aim to tell the story of my own lived experiences of the illness, and how I sought to reimagine a ‘self’ or a life living alongside the illness, that could still be considered a good life. Autoethnography is an autobiographical genre of writing and research, that displays multiple layers of consciousness connecting the personal to the cultural. Autoethnography uses the researcher’s experience as primary data and in this thesis I utilise field notes kept over the years, journal entries, photography and my own poetry. The data is presented as a series of four narratives. These narratives are then analysed using three interrelated conceptual and theoretical frameworks. The first is an original conceptual framework, ‘The Struggle Cycle’, designed for this study. It draws on and integrates two others: Witkin’s (2014) Four Conditions Facilitative of Transformative Change, and the Buddhist philosophy of the Four Noble Truths. Too often people with illness are the passive subjects of investigation by researchers who do not have experience of illness. An autoethnographic approach helps to redress this imbalance and generate unique insights. I intend that my study will help those who live with ME to reflect on and understand their own experiences, and will help to inform medical professional and other support services dealing with ME, as well as the general public and those who share their lives with people affected with ME, who can often struggle to understand. The insights generated could also apply to many other chronic illnesses.

Name dc:type.qualificationname

phd

Level dc:type.qualificationlevel

doctoral

Grantor dc:publisher.institution

National University of Ireland Maynooth

Year dc:date.issued

2020

Author dc:creator

• Farrell Delaney, Orlagh

Language dc:language

en