Encephalomyelitis

Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

by Naida Edgar Brotherston, MSW, RSW

Hawthorn Medical Press, 10 Alice St., Binghamton, New York 13904 USA

2001, softbound, 168 pp., $24.95

Of all of the challenges facing people with Chronic Fatigue Syndrome and Myalgic Encephalomyelitis as it is called in Canada and the United Kingdom, the stigma surrounding the illness may be the most difficult.

Naida Brotherston, MSW, RSW examines in Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome the many effects of living with a chronic illness including the very real problem of negotiating a world that is misinformed about the illness. She accomplishes this through a research project that involved four young women who had been diagnosed with CFS in their teen years and were in their twenties at the time of their interviews. The research was based on the participants' self-reports of their current and past life experiences with a diagnosis of CFS.

Some of the actual material from the interviews is included in the book and demonstrates, as the author concludes, a similarity between the experiences of the four women. After describing the onset of their illness, the women recount what could be called a frustrating experience with the medical community. There was a long period of uncertainty regarding a diagnosis because tests were inconclusive. Eventually the women were given a diagnosis of CFS because of the constellation of symptoms and the exclusion process, but with no treatment options or prognosis offered. During this phase, the women felt "a connotation of blame was embedded in the diagnosis." As they moved through the medical system seeking treatment, they encountered the variety of explanations of their illness that reflected the medical profession's conflict surrounding the CFS diagnosis. One doctor may accuse the patient of fabricating symptoms to avoid school while another may recommend physical exercise that would be beyond the limitations of the patient. As a result, the women developed a distrust and anger towards the medical community.

Though the participants were experiencing totally debilitating symptoms, they now had to deal with the perceptions of the greater community, which were influenced by the media to minimize the illness with such terms as "yuppie flu" or "Raggedy Ann Syndrome." The media promotes attitudes that are dismissive of the seriousness of the illness, so the women experienced altered relationships with family and friends who believed the media and who doubted at times the veracity of the ill person. This in turn would lead the women to go through periods of self-doubt as to whether or not their own illness was in fact, real.

It becomes evident in Brotherston's research that the complications of living with a stigmatized chronic illness are many. These problems are especially amplified in adolescence where the normal activities of preparing to pursue life goals, learning to live independently and forming a healthy sense of self are interrupted. Their new limited options are then complicated by the opinions of others. In areas of employment, disability support funds or educational opportunities, the women needed the cooperation of others to pursue their goals -- in fact their level of success can be correlated to the amount of cooperation they received.

The women do progress into adulthood and learn some survival skills in the process. They developed an internally-based sense of self that is not drawn from externally generated negative messages. They learn to renegotiate close relationships and make new friends. The new friends are usually other people who have experienced crises in their lives or are also in some way considered different.

There is a lot of valuable information to be gleaned from this book -- and I do mean gleaned. The author has chosen a style that demonstrates the rigorous scientific method she used to construct her study. This may be convincing for some but does make this book somewhat laborious to read. She describes in great detail the grounded theory she chose for her research and how it applied to this study. Rather than provide references in footnotes, they are included in the text in parentheses making the reading experience a choppy one. This method continues in her literature reviews and discussions where the references are so numerous they become a distraction.

The cover recommends this book for patients, family members and those in the helping professions. Those with CFS and others with stigmatized illnesses such as Multiple Chemical Sensitivity and Fibromyalgia will find the experiences of the four women familiar. The book though, does appear to have been written for the benefit of physicians and other medical professionals who need to be convinced with scientific method. But if Brotherston's work teaches us anything, it is the dire need for the mainstream medical community to stop making life even more difficult for people with CFS. This book should help.

COPYRIGHT 2001 The Townsend Letter Group
COPYRIGHT 2001 Gale Group