Stricken

by Peggy Munson

Develop a better understanding of what CFS/CFIDS sufferers are going through!

In the 1980s, a strange emerging epidemic baffled doctors in Incline Village, Nevada. Dismissed by the media as "The Yuppie Flu," Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) turned out to be neither a faddish disease of the wealthy nor a passing trend, but rather a growing worldwide epidemic of devastating proportions.

In the voices of a South African journalist, a former marathon runner, a teenage girl, a public health activist living on the edge of race and gender, a cancer patient neglected by doctors because of disdain for her chronic illness, and a theologian relearning the art of spiritual empathy, the people who share their stories in Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome defy cultural stereotypes and explore the complex social and political dynamics of this hidden epidemic. Through their distinct points of view, we feel the grief and hope of those stricken with CFIDS and learn of the complex nature of this misunderstood disorder. These are compelling stories about a quiet and baffling epidemic. The first American anthology to contain stories from a diverse range of people with CFIDS, Stricken offers an intimate look at the political and social issues surrounding CFIDS, as told by those who are living through this ordeal. Stricken addresses several issues, such as:
why some doctors still do not believe CFIDS is real
how the disease is mocked in the media
myths about this illness
the personal fight for medical or public recognition
the skepticism and hope that is felt by the ever-growing number of CFIDS sufferers

Stricken confronts fascinating CFIDS issues such as the Kevorkian suicides, accusations of Munchausen Syndrome By Proxy, Gulf War Syndrome, the role of storytelling in a memory-impaired patient movement, and the feasibility of mass activism in a disabled population. With contributions from Pulitzer-prize nominated writer Susan Griffin, renowned health writer and radio host Gary Null, well-known feminist activist Joan Nestle, and award-winning poet and essayist Floyd Skloot, Stricken is an eloquent testament to the heroism, defiance, and diversity of the CFIDS community.

Genres: Nonfiction, Disability, Health, Essays

302 pages, Paperback

First published November 2, 2000

About the author

Munson is the author of the novel, Origami Striptease, a finalist for the Lambda Literary Awards. She also edited the anthology, Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome. She has published in such places as Best American Poetry 2003, Literature and Medicine, Marginalia, the Spoon River Poetry Review, Sinister Wisdom, 13th Moon, Blithe House Quarterly, Lodestar Quarterly, Margin: Exploring Modern Magical Realism, Best American Erotica, and the San Francisco Bay Guardian. Peggy has also been a fellow at the MacDowell Colony, the Ragdale Foundation, and Cottages at Hedgebrook.

Pathogenesis was a finalist or semifinalist for numerous prizes including the Dorset Prize, the Carnegie-Mellon Poetry Series, the Beatrice Hawley Award, the Verse Prize, and the University of Wisconsin Pollack Prize. Bay Windows described Peggy as a "master of the written word," and Rebecca Brown dubbed her a "stylist extraordinaire." An Illinois native, Peggy now resides in the woods of Western Massachusetts.

Reviews

[Emmanuelle · Rating 4 out of 5]

This is a compilation of writings by people living with CFS. Some are really amazing ("In The Shadow of Memory" by Floyd Skloot; "The Paradox of Lost Fingerprints" by Peggy Munson; and "Spiritual Healing, Holistic Healing and the White Light Fascists" by Caitlin MacEwan) and a few are just OK. Most of it is good stuff, though; a first-hand look at what it's like to live with this debilitating and invisible chronic illness. It's not a medical, how-to-get-better kind of book; it's a tell-it-like-it-is book. And tell it does ...

[Neal Alexander · Rating 3 out of 5]

The authors identify their illness as CFIDS: Chronic Fatigue Immune Dysfunction Syndrome (although the title says Chronic Fatigue Syndrome). They want to be taken seriously by Western medicine, which is understandable, given its prestige and track record of treatment and prevention of other diseases. Their tragedy is that Western medicine doesn't generally want to help with CFIDS, but nor will it admit that it _can't_ really help. The reason for this impasse, I believe, is that Western medicine's unspoken philosophy is not holistic but rather dualistic, meaning that conditions are divided into organic and functional. The latter need a broader perspective than Western medicine can offer, so practitioners resent sufferers who have turned to them, rather than finding solutions elsewhere.

Sufferers internalize this hierarchy of conditions, and reject the stigmatized functional diagnoses. However, several of the current authors describe how the disdain of health practitioners, and society more generally, has worsened their condition. For example “It is difficult to describe the effect of being told you are not really sick when you are. The disjunction between private experience and public image is so severe, you can easily become obsessed with establishing the truth. The degree of discomfort felt in body and soul at such a fracture could itself be a subject for psychosomatic medicine.”

Some of the scientific statements are just wrong, e.g “a mycoplasma is a cross between a bacterium and a virus”. But the book is worthwhile for the chapters which address its stated goal of conveying what it's like to live with CFIDS.

[Jodi · Rating 4 out of 5]

This is a book that leaves you changed after you've read it, it's so powerful and compelling.

Each essay is extremely intelligently written and the format makes it easy to read a chapter at a time. It's even available in a more MCS friendly version.

This is the BEST book for really getting across how severe ME can be so far, both from the medical information given and from individual case studies as well. You get a real sense of how horrific ME really is, something lacking in almost every other book on the subject.

This book is an absolute must-have. This book really changed the way I thought about a lot of issues relating to ME, it leaves you feeling so empowered and determined not to put up with any more crap! Brilliant book. (M.E. is not the same thing as CFS or CFIDS, but this book is a M.E. book in the descriptions of the disease, absolutely. For political information on M.E. see books by Dr Hyde, however.)

Jodi Bassett, HFME

[Anna · Rating 4 out of 5]

A solid collection, although there are a couple of less-than-stellar pieces in here that detract from the overall quality of the volume (particularly the essays by people who do NOT have CFS, but are caregivers of people with the condition).