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 CHRONIC FATIGUE SYNDROME BOOKS

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‘Encounters With the Invisible': Unseen Illness, Controversy, and Chronic Fatigue Syndrome by Dorothy Wall.

A BOOK REVIEW by Cort Johnson

Stricken with CFS as a young adult in 1980, Dorothy Wall’s has been through it all; the uncertainty of dealing with an unknown disease, the attempts to hold it all together, the relationship problems this disease causes, the isolation it engenders, the uncomprehending friends, the clueless doctors, the small steps forward, the occasional big steps back, the bit by bit resumption of her career.

These are difficult subjects but this is not a depressing book. Nor is it a get well story or heroic epic, instead it is a look at how an articulate and intelligent woman has confronted and still confronts the vicissitudes of having a difficult chronic disease. As we watch her struggle with the aftermath of a terrible relapse she suffered in the midst of a business trip in 1995 she takes us through a range of topics; the disease’s history, it’s strange name, its effects on relationships, its many manifestations, it’s central nervous and immune system complications, the ups and downs of the advocacy movement, the clash between patient and doctor, advocate and agency, etc.

The chapter on neurasthenia - the name for CFS a hundred years ago – was fascinating. CFS has primarily been a women’s disease throughout history and women have borne both the brunt of its effects both physically and psychologically. It was heartbreaking to read the eloquent stories of women’s struggle with both the prejudices of their time and their disease. This disease, largely hidden throughout history has caused a countless amount of suffering over time.

Another intriguing aspect of CFS Dorothy brings out are its many manifestations of invisibility; how the name has masked the publics understanding of it; how the normal test results mask its severity, how the isolation and silence this disease brings thwarts its public articulation, how it’s mysteries have thwarted it’s effective treatment. Along the way she also illuminates the ways CFS is steadily becoming more visible; how the central nervous system and immune findings and others are slowly giving CFS more and more recognition in the medical community.

As one follows Dorothy’s path one goes through the entire gamut of emotions, dismay, fear, excitement, frustration. One celebrates Dorothy’s triumphs and fears for her losses - at one point I was so worried about her I skipped to the end to find out how it all turned out. CFS patients will find their own concerns echoed and their problems illuminated and at all times they will enjoy her rich, poetic prose. Dorothy was a creative writer and editor before she came down with CFS (and still is) and it shows; CFS is not at an easy disease to describe but her ability to tease out its manifestations – to make it come alive for the reader - is stunning.

One shouldn’t forget the wonderful afterword by Nancy Klimas, one of our top CFS physicians and President of the International Association of Chronic Fatigue Syndrome. This is a book that should resonate throughout the CFS community for years to come. We are very lucky to have it.