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"Encounters with the Invisible"

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Updated: February 22, 2007

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Cover photograph: "Hartwig House, Truro, 1976" by Joel Meyerowit
Cover design: Kellye Sanford

Unseen Illness, Controversy, and Chronic Fatigue Syndrome

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Author: Dorothy Wall
Afterword: Nancy Klimas, MD
Publisher: Southern Methodist University Press
Copyright: 2005

Although Encounters with the Invisible is a personal account of author Dorothy Wall’s struggle with chronic fatigue syndrome, you will relate to it equally as well if you have fibromyalgia, Gulf War Syndrome, multiple chemical sensitivity, or any one of a number of chronic and controversial illnesses.

Overview

Wall is gifted with extraordinary descriptive abilities. You don’t just read about her illness; you experience it with her. She paints vivid pictures with her words. You can see her bedroom, where she spent weeks, months, even years too weak to walk to the bathroom without assistance. You can feel her profound fatigue as exemplified in this passage: “It was only ten yards to the foyer, but each step was increasingly difficult. A syrupy weight ran through my head and limbs, pressing me down, my legs wobbly and rocky, as if I’d just stepped off a boat.”

As impressive as the descriptions are, Encounters with the Invisible is so much more than just a patient’s account of her illness. Wall also tackles the medical and cultural issues these illnesses raise. She reveals the behind-the-scenes drama that has been going on for nearly 30 years with a cast of medical professionals, bureaucrats, and passionate patients.

Who Should Read this Book and Why

  • Patients – You will see yourself. You’ll see your deepest feelings and frustrations come to life as Wall gives voice to the inner turmoil known only by someone who has lived day after excruciating day with a chronic, debilitating illness.

  • Families and close friends – When someone you love is seriously ill, you experience a wide array of conflicting feelings: concern, confusion, frustration, and helplessness, to name a few. This book will give you a peek inside your loved one’s world. It will help you understand what they are going through and what they most need from you.

  • Healthcare professionals – Patients, particularly patients with one of these confusing and controversial illnesses, often find it difficult to put their suffering into words. And they usually won’t tell you how devastated they have been by other doctors who have brushed them off or accused them of being lazy or having mental problems. Encounters with the Invisible can give you a clearer picture of what your patients need from you and what a huge difference your response can make in terms of giving them hope.

Chapter Examples

In 18 chapters, Wall covers most of the issues – personal, medical, historical and cultural – important to anyone who has chronic fatigue syndrome.
  • “That Name” (Chapter 4) and “That Name.2” (Chapter 14) explores the heated controversy that has raged for nearly three decades among patients, doctors and government officials over finding an appropriate, less demeaning name for CFS.

  • In “Staying Home” (Chapter 6) Wall conveys the frustrations of being homebound and the struggle to find meaning in a life dominated by limitations.

  • “Listening” (Chapter 9) describes the crushing blow patients experience when medical practitioners turn a deaf ear to their requests for help.

  • In “Passing” (Chapter 10) Wall relives the inner conflict she experienced as she vacillated between wanting to pass as a “normal” person, while at the same time needing people to understand her illness. She describes her struggle to hang on to her old sense of self as her body seemed determined to strip her of everything important to her.

Summary

Encounters with the Invisible is a beautifully written book and probably the best personal account of living with a chronic illness I have ever read. If you’re looking for a textbook about CFS, this is not it. But if you’re looking for a book that will offer you comfort, encouragement and hope, this is the book for you.

Although it’s usually best to read a book from beginning to end, for the most part, each chapter can stand independently. This allows you the option of choosing to read a chapter out of order, or of laying the book down and picking it up several days later without feeling lost. If you’re having a particularly brain-fogged day, you might find it difficult to get through some of the more technical medical discussions. In that case, either skip to a chapter that is easier to read or put the book aside for a day when you are feeling clearer. This book is definitely worth the wait.

Visit Dorothy Wall's website to learn more about her and her book.

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