Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome. Edited by Peggy Munson, Hawthorn, New York; 2000. 270 pp. $59.95 (hardbound), $24.95 (paperback).
Mononucleosis, Epstein-Barr, flu, depression, lyme disease, fibromyalgia, lupus, multiple sclerosis, leukemia, spinal meningitis, multiple chemical sensitivity.... Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) is a devastating illness that taunts traditional medicine by concealing its etiology and mimicking the symptoms of better understood (read: medically accepted) illnesses. Patients frequently receive many of the above diagnoses as revealed in their thick, several volume medical charts before finally receiving the diagnosis of CFIDS and beginning the arduous process of integrating being a person with CFIDS into their identity.
Peggy Munson, a writer, poet, and a person living with CFIDS has compiled a collection of unique narratives, poems, and essays that portray CFIDS with a level of intimacy and complexity that has been overlooked in most accounts in the media and medicine. Munson effectively weaves the personal, social, medical, and political together through first person accounts of individuals living with CFIDS and their affected family, friends, and lovers. Her list of contributors refutes a long held notion that CFIDS almost exclusively pertains to White, affluent individuals. These narratives illustrate that CFIDS intrudes on and forever alters lives regardless of age, gender, race, sexual orientation, or income level.
The book is divided into six sections that loosely organize the narratives, essays, and poetry by theme: Doubt and Diagnosis, Atlantis, Memory and Metaphor, Synergy and Movement, Fate and Faith, and Love and Alliance. These sections serve to emphasize the overarching themes of being a person with CFIDS in terms of physical, psychological, emotional, interpersonal, and spiritual struggles. However, the most evident and central theme that is interwoven throughout much of the book and predominates in many of the narratives is that of invisibility.
There are numerous ways in which Munson and her contributors describe CFIDS to be an invisible illness. Perhaps the most obvious way in which CFIDS is invisible is its lack of legitimacy and support in the medical field. Dorothy Wall's "Encounters with the Invisible" details that the Centers for Disease Control did not acknowledge CFIDS until 1988 and that many physicians and medical researchers continue to doubt or deny its existence to this day. Because CFIDS lacks legitimacy, few medical dollars have been appropriated toward the study of the illness; thus, it is likely that CFIDS etiology, pathogenesis, and viable treatments will remain understudied and in the shadows of more "recognized" medical pursuits.
People living with CFIDS also have had to cope with public invisibility. In the book's introduction and in "The Paradox of Lost Fingerprints," Munson surmises that the original name used in the United States (i.e., Chronic Fatigue Syndrome) may have contributed to the public's initial response to the disease, which was essentially to treat it as a nondisease. It quickly became known as the "yuppie flu," a designation to reflect the belief that it affected only young, White, affluent individuals. Munson describes how CFIDS became an "accepted social parody" (p. 108) and a "catchall metaphor" (p. 109) for the overworked and tired in need of a well-deserved vacation. Because of the media's unwillingness to take the illness seriously, media coverage rarely attempted to debunk myths or abate skepticism through balanced reporting and research. Furthermore, June Stein in "From Activist to 'Pacifist': Where is the Mass Movement?" astutely points out the dilemma of attempting to gain visibility, exert influence, and demand a public voice when fatigue, illness, and extended bed-rest trump activism.
Beyond the medical and public invisibility of CFIDS is the day-to-day invisibility experienced by the thousands of people with CFIDS, often too sick to leave their beds, to shower, or even to brush their hair. For example, Nadine Goranson vividly describes in "Silent Trespass" the ways in which CFIDS deeply permeates an individual's life; and yet, most friends, coworkers, and nonnuclear family members never witness it. Goranson discusses the many issues of CFIDS such as dealing with the realities of diagnosis, treatment, insurance, employment, and family that remain largely invisible to outsiders. In addition, there is little comprehension by others of how everyday activities, such as hygiene, cooking, and cleaning, can be considered major efforts or relished accomplishments depending on the day of the week or cycle of the illness. The CFIDS home is a foreign home, and an invisible one to most of us.
The book is arguably at its best when it draws the reader into the lives of people living with CFIDS and those who share in their lives as parents, children, spouses, lovers, and friends. The contributors painfully detail anger, grief, disability, sickness, fear, depression, and desire for death amidst the backdrop of a medical system that has often been guilty of labeling CFIDS patients as hypochondriacs, neurotics, and generally stressed out. The authors allow the reader not only to see the impact of the illness but also the anguish related to the chronic antagonism by the health care system, disability programs, insurance agencies, and other institutions set up to "assist" individuals. Yet, the contributors also manage to find authentic moments of joy, pleasure, and triumph that inspire the spirit.
One weakness in the book is Munson's unyielding assertion that CFIDS must have a wholly physical etiology and that all potential psychological and interpersonal (e.g., trauma) contributions undermine and negate the experience of a person living with CFIDS and result in victim-blaming. I can empathize with Munson's position given the need for validity of the illness within the medical profession. Yet, as a feminist health psychologist working with individuals living with HIV/AIDS, lupus, multiple sclerosis, fibromyalgia, and CFIDS, I have found it useful to consider many empirically supported and/or theoretically grounded possibilities for disease etiology. The complex relationship of biological, social, and psychological phenomena to medical illness is only beginning to be revealed through research. Although we are still in the infancy of understanding mind-body relations in fields such as psychoneuroim-munology, I do not believe it will discredit any medical illness if psychosocial factors are found by researchers to contribute to the etiology or course of a medical condition. However, I also concede that acknowledging anything beyond the physical may be a luxury afforded to physical illnesses considered visible and accepted by conventional medicine. This issue aside, Munson's book should prove a beneficial resource, particularly to academic and practicing psychologists interested specifically in this content area.
Lara M. Stepleman
Medical College of Georgia
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