Customer Reviews

Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome (MEDICAL HUMANITIES SERIES)

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4 star:		(1)
3 star:		(0)
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1 star:		(0)

 

 

I was diagnosed with post-viral CFS in 1988. This book is an excellent description of living with CFS except for one thing: 3/4 of marriages affected by chronic illness break up, which means that most of us don't have the live-in support system she had.

Some disbelieving doctors like to attribute CFS to "secondary gain" or enablers who allow the patient to "enjoy the sick role". Unfortunately, for many CFS patients, there's no enabler and the only thing you gain is the stress of trying to make ends meet with no income.

Wall tells of having someone run her bath, gently wash her, dress her, and help her back to bed. That's a luxury most of us don't enjoy. If I'm not well enough to cook, I don't get dinner; if I cannot safely get in and out of the tub by myself, I don't bathe (on a cold winter day when I needed a bath to warm up, I got stuck in the tub for over an hour because I lacked the strength to boost myself up and out, and there was no one to call for help).

Wall's live-in support structure allowed her to do what those of us who live alone can't: use all her energy to write a book to explain to the rest of the world what it's like to be trapped in a body and brain that don't function.

I recommend this not only to patients, but to their friends and family as one of the best patient-written books I've read.

I have read many books on CFS but none has moved me more deeply in more different ways than this book has. One of the above reviewers was correct; this book is a classic, probably the first literary classic of CFS. Ms Walls, a professional writer, brings all her skills to bear in describing in poignant terms the losses, frustrations and triumphs she has encountered in her several decade long experience with this disease. There is something here for everyone; besides her story the author focuses chapters on the disease's history, it's name, the ongoing research, what it tells us about the pitfalls of modern medicine and more. What I enjoyed most about this book was her fine tuned sensibility and her poetic grasp of language. She proved to be an excellant guide through the issues that the CFS patient faces in our world today. We are lucky to have this book.

This book is superbly written, and seamlessly joins the author's own stuggle with CFIDS with an account of the history and politics of the illness. A must-read for every patient and his/her family.

As an ME/CFS person myself, I felt enormous relief as i read Dorothy Wall's 'Encounters With The Invisible: Unseen Illness, Controversy and Chronic Fatigue Syndrome.'
Here is someone living the other side of the world, describing how i feel, year in, year out. She writes a wonderfully detailed account of her own experience with CFS/ME, woven together with a well researched description of the history, science, and politics of the illness.
Whether you have CFS/ME, someone you know has it , or you just want to know more about this hidden epidemic, i urge you to read this beautifully written book, a classic no less.

Dorothy Wall writes beautifully about her experience with CFIDS interweaving and illuminating her story with the historical, cultural and scientific issues surrounding the illness. With this book she effectively attacks the stigmatization of CFIDS which has led to a shameful dearth of funding for research and to a not uncommon dismissal of people with CFIDS as "lazy" or "just trying to get attention." As a person with CFIDS the ending left me hopeful that in the future the situation for people with the illness will change.

If I could write a book about CFIDS/Chronic Fatigue Syndrome, this is the book I would want to have written. It captures the feeling of what it's like to live with CFIDS/Chronic Fatigue Syndrome better than any book I've read (and I've read a lot of books about CFIDS). The author, Dorothy Wall, manages to move seamlessly between the personal and the larger political and medical issues of this debilitating chronic illness.

Wall grapples with many of the questions and issues I've thought about or have been forced to deal with, and which I'm sure many people with CFIDS will relate to. The role reversal of being better informed about CFIDS than the doctors you consult. The effect on your identity when your professional life is interrupted. Dealing with the expectations and advise of well-meaning friends and family. The way CFIDS forces you to reexamine the ethic of pushing yourself to exceed your boundaries and limitations. The desire to "pass" as a healthy person, if only briefly. The difference between accepting the realities of CFIDS and capitulating to them. The strain it puts on your closest relationships with spouse and family members when they are forced to become caregivers. The unexpected small joys and benefits that a constricted, slowed-down life can bring, like an appreciation of the beauty of a flower unfolding. The questions about what CFIDS and related illnesses may portend for our society.

Dorothy Wall's background as an editor and writer show through, in the way the writing is at once spare and lyrical. She can be poetic without being flowery. The simplicity of the writing allowed her meaning to penetrate my CFIDS brain fog, so that I didn't have to read the book in five minute increments.

Let me mention what this book ISN'T. It isn't a how-to guide for living with chronic fatigue syndrome, or a textbook for "CFS 101." It doesn't include a laundry list of symptoms, suggestions for treatment, or a list of theories about the cause. In many ways, it contains more questions than answers. It does give a general overview and background, and the afterward by Dr. Nancy Klimas is a good summary of the biology of CFIDS and an overview of current research.

This is a book that I want to press into the hands of family and friends, and say "Read this! This is what it's like." I would urge anyone who either has this disease or knows someone who has it, to read this book. I'm seriously thinking about buying a second copy to give to my doctor.

I have suffered from CFS since the late 70's although I was able to "push" through the majority of those years. I am now back in an accute phase and found Dorothy Wall's book fascinating , beautifully written and helpful. It helped make my illness real for me since I have never "looked" ill and have learned to doubt that what I have is real. I found it a story of the truth, which was most refreshing and inspiring.

I found this to be an excellent book on CFIDS. I too suffer from it and feel sometimes I am the only one in my corner of the world that has it. It is helpful to read about someone else who has the same symptoms so I realize I am not " losing it" and it is real. The author also provides comphrensive data relating to medical, historical, and social aspects of this troubling illness. I would highly suggest this to people who have CFIDS and those who want to learn more about it. It is a a very readable book that is packed with information and is not boring or dry.

This book is amazing. As the spouse of a CFS/ME sufferer, the book opened doors and shined the light on things that I knew but couldn't put into words. A must read for any person with CFS/ME or their loved ones.

Having too much experience with CFS,I normally shun most articles dealing with this malady..I always emerge and by then want to forget about the lost time, the ups and downs and those who simply cannot understad what utter fatigue really means. Dorothy Walls writes very well and although her case was so severe that it might depress and discourage a lot of victims, it is still worth reading. The longest I have ever been out of circulaion was 6 months 19 years ago...a few episodes lasting not more than a week since then but, and most recently, alas, a 2 month whammy. I am emerging and fully expect, at 81, to resume a full schedule as a publicist.