Disability Studies Quarterly
Fall 2006, Volume 26, No. 4
<www.dsq-sds.org>
Copyright 2006 by the Society
for Disability Studies


BOOK & FILM REVIEWS

Wall, Dorothy. (2005). Afterword by Nancy Klimas, M.D. Encounters with the Invisible. Unseen Illness, Controversy, and Chronic Fatigue Syndrome. Dallas: Southern Methodist University Press. 6.4 x 9.3. 352 pgs. $22.50. Hardcover 0-87074-504-2

Reviewed by Manon S. Parry, University of Maryland

Autobiographical accounts of disease and disability, intended to educate health professionals as well as empower patients and their families, have become a flourishing publishing trend in recent years. Dorothy Wall's memoir deals with an unusual subject within the genre which remains controversial–Chronic Fatigue Syndrome (CFS). Although it may affect more than 800,000 Americans, those living with the condition, like the author, face the disbelief of friends, co-workers, and physicians (p. xviii). "When a doctor truly listens to the patient's narrative," Wall argues, "a shift in perspective and care is indeed possible" (p. 128). Her book is intended to bring about that shift, both within the medical profession and outside of it.

Wall goes beyond the standard autobiographical framework of the memoir by relating her experiences, of more than 15 years of muscle fatigue, pain, and "brain fog," to the emergence of chronic fatigue syndrome as a category of illness. Describing the reticence of the medical community to recognize (and therefore legitimize) the syndrome, and the formation of a new activist movement of people with CFS, she amply demonstrates the connection between her personal "journey into illness" and this wider context. She disparages medicine's inflexible adherence to existing disease categories, and explores how a more holistic interpretation of the body would allow for a better understanding of CFS, but she avoids pitting all of medicine against a homogenous patient community. In documenting the struggle over the label "chronic fatigue syndrome," Wall explores tensions between different patient advocacy groups as well as disagreement within the medical profession. Wall suggests that the name given to a disease has a significant impact on the attention given to it, and because chronic fatigue syndrome trivializes the illness it has failed to generate any serious research.

Although Wall adds an important dimension to her narrative by integrating her own experiences within the larger history of CFS, she also covers some familiar ground. Her argument is based on fairly well-known critiques of modern medicine, and she draws on recognizable chapters in its history to support her case. The author lays out a standard account of the growing authority of the physician since the19th century, and draws parallels between George Beard's definition of neurasthenia as well as Silas Weir Mitchell's infamous "rest cure" and her own bedroom confinement.

Despite her critique, Wall places great stock in medicine's power to solve the puzzle of this mysterious illness, and perhaps even to cure it, and in the process marginalizes some important issues. Privileging the idea of a biological agent as the possible cause of the syndrome, she minimizes the role environmental toxins may play and rejects any psychological component in the illness. This circumvents any detailed discussion of the factors beyond individual behavior that influence health. She is also silent on the stigma that surrounds mental illness and depression, which may also play a role in attitudes towards CFS.

Wall does incorporate some key ideas from disability studies scholarship. Although the troubled status of pain and impairment in celebratory narratives of disability is not addressed directly, her description of the everyday experience of CFS highlights these issues and their impact on her life. Attempting to make an "unseen illness" visible, she emphasizes the limitations the illness has placed on her ability to concentrate, to sleep, to work, even to leave her bed. Yet her need to frequently assert her physical limits to dubious observers, who include family members as well as medical specialists, is in constant tension with her desire to "pass" as someone without a chronic debilitating condition. For readers who have not already encountered these ideas, the book provides a good overview of some key issues. Targeted to a general audience however, it is light on references, making it difficult for readers to follow up on the rich secondary literature that addresses these concepts.

Wall, who has a background in creative writing and has published fiction and poetry, expresses the impact of CFS most evocatively when describing how physiological changes alter her self-perception and her relationships with others. Her account of the reluctant transformation from wellness to illness is very moving, and her description of her partner's changing roles of lover and caregiver give a powerful sense of the unspoken anxiety they shared. Against the background of the contentious history of CFS, these passages offer an illuminating glimpse into the devastating results of medical indecision and distrust on the daily life of a person living with the illness.





Copyright (c) 2006 Manon S. Parry



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