Review

Why are we the ME generation

KNOWING ME: women speak about myalgic encephalomyelitis and chronic fatigue syndrome
Caeia March (ed)
The Women’s Press, 1998, £8.99

As the publishers rightly claim, ME remains a ‘highly mysterious illness’ surrounded by controversy – so any attempt to understand this mystery more fully from the perspective of women affected is to be welcomed. Unfortunately, I found myself ultimately confused and disappointed by this collection.

The book is divided into three sections. Each is made up of prose and poetry, fact and fiction, by women living with these illnesses. The first section looks at women’s struggles to get their illness ‘diagnosed’ and accepted, the second explores relationships with family, friends and community, while the last, entitled ‘healing ourselves’, explores living with and recovering from from ME and CFS. Many of the individual contributions are moving, documenting years of struggling with ill-health and other people’s prejudices. There were also some thought-provoking contributions which raise important questions about the role of illness in women’s lives at particular socio-historical and personal junctures. In particular, I found the reflections of Elina Rigler, on the fantasies of pop health psychology, and Maria Jastrzebska, on Western capitalism’s fears of need and dependency, refreshing and challenging. But these contributions suggested to me what the collection might have been and I was left wishing that there had been more of this kind of critique.

While my perspective as an able-bodied woman without ME may influence what I feel is important, I couldn’t help sympathising with Elaine Showalter, who has reviewed this book elsewhere,* in feeling that an important opportunity to ask ‘tough feminist questions’ about ME and CFS has been lost. In particular, I became frustrated by the way in which an emphasis on ME and CFS as a process of self-discovery, often coming after years of overwork and caring for others, was accompanied by a fierce denunciation of any suggestion of psychological explanations for the illnesses. I realise that this is a complex and highly emotive issue, but the collection failed to convince me that a psycho-social element was not important in some instances. I do not mean this dismissively, as I do not believe that ‘psychological’ or ‘social’ illnesses are any less ‘real’ or important than ‘physical’ illness, nor that they are necessarily distinct. Further, as a feminist, I would not condone the medical establishment’s refusal to deal respectfully and seriously with women’s experience of illness.

Nonetheless, I was left with a feeling that a range of factors might be causing the illness for different women, from viral or environmental agents to psychological stress. For me, the book reinforced an impression that ME and CFS are ‘catch-all’ labels for what is not known or understood. In this situation, an insistence on possible and not-possible causes for all women, whether from the the medical profession or others, seems dangerous. Further research, which many of the women advocate, may result in other ‘diagnoses’ for some women, as what constitutes and causes ME/CFS becomes more clearly understood. While the book is important in documenting the lived experience of some women with ME and CFS, little new light is shed on the mysteries of the illness.

*Independent on Sunday, January 25 1998.