But You Don’t Look Sick is an unusual contribution to the debate around a group that is much discussed but rarely heard from: people living with invisible illnesses.
When Ragnhild Holmås fell ill with myalgic encephalitis (ME) as a 23-year-old, she had no idea that her struggle against the disease would be overshadowed by her struggle to be believed. To live with an invisible illness is to live with scepticism – from doctors, from social services, from employers; even from friends and family. Over the period of her illness, Ragnhild moves from denial to acceptance and tries to speak openly about being invisibly ill. Using her own story as a starting point, she investigates topics such as stigma, lack of knowledge, language and identity. Her descriptions may strike a chord with sick people and their relatives, who may also draw strength from the book when they encounter prejudices themselves. People who have dealings with the sick person or have an opinion about them may gain a fresh understanding of what they are going through – as well as tips about how to be their best possible ally.
The author writes with a self-deprecating sense of humour, interspersed with pain and seriousness, making free use of creative elements, such as an internal dialogue in the format of an SMS exchange, lists and “prejudice bingo”. The book consists of numerous short vignettes that mirror the limited endurance that results from many chronic diseases.
Sucker punching the Sceptics
Ragnhild Holmås writes with a leaden levity about a life of diagnosed laziness. If anything, this book has humbled me for the next time I meet someone who is chronically ill. If you, like me, are one of many who has a deep-set scepticism towards the ME diagnosis, you should read this book. The most thought provoking aspect of this book is the way Holmås shows us the prejudice and stigma that used to be part of illnesses we now know so much more about.
The invisibly ill
Ragnhild Holmås writes the autobiographical and societally scrutinizing “But You don´t look ill” on behalf of anyone suffering from chronical and invisible illnesses – the way she does. Through airy chapters, with plenty of dark humour in the shape of bingo boards and lists of useful tips, Holmås addresses a history of self–imposed silence.
Holmås paints a vivid picture of being referred to as a burden, in a society where two out of three think that people with long-term illnesses should just “pull themselves together”. She does a good job linking the gaze of society with the lack of research in this low status field, and the misguidance of medical language.
The book is a meaningful first hand description of the sorrow that comes with the loss of function, and the longing to make others understand a life where every movement has a price, no matter how well you look.
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