An Evocative Autoethnography of Living Alongside Myalgic Encephalomyelitis (ME)

This ground-breaking book explores and explains 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. It is estimated that there are 17-24 million sufferers worldwide. The author has lived with moderately severe ME for the last 18 years. Utilising autoethnography as a methodology and drawing on multidisciplinary social science theory, the book tells the story of the author’s own lived experiences of the illness, and how she sought to reimagine a ‘self’ or a life living alongside the illness, that could still be considered a ‘good life’.

This autoethnographic book is beautifully and evocatively written. It is a work of scholarship that will be highly accessible to academic and other readers. It is also a comprehensive introduction to autoethnography as a methodology, but it is much more. The images and poetry complement the narrative discussion, and are exemplary as part of an approach that integrates creative work with academic argument. It illuminates the struggles of living with ME and how there can be sanctuary.