Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome - A Review

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

There’s something special about Encounters with the Invisible and the woman who wrote it. I’ve read a lot of touching personal stories written by people living with a chronic illness, but this one is so much more.

Dorothy Wall opens the door to her soul and draws you in. She paints extraordinarily vivid pictures with her words. You sit in her bedroom with her, eyeing the soggy tea bags and used tissues strewn about; you share her frustration as a few days in bed stretches into weeks, months, and finally years; you feel her discouragement as yet one more doctor refuses to acknowledge that CFS is a real, physical illness.

But as you journey through her world, you also experience her deep sense of self-awareness, her steadfast determination and her unflagging hope.

About the Author

Dorothy Wall came of age in the liberating ’60s. Even as a young child, she knew she would not be the traditional stay-at-home woman. As she grew up, she prepared to take her place in the professional world - and take her place she did. Wall taught poetry and fiction writing at three colleges, spoke at conferences, and had her own business as a writing consultant. All was going according to plan until the fall of 1995 when she collapsed with Chronic Fatigue Syndrome (CFS).

Within days, Wall’s world changed drastically. She became too weak to even write a short note and her throat was so sore, she couldn’t speak for months at a time. This vocal, prolific writer and teacher suddenly found herself silenced. Wall says of that time, “As someone who prized an active, vocal life, I was struck by the way CFS had made me a shut-in, muted and invisible, mimicking the forced confinement of women in earlier times.”

Why She Wrote the Book

Two years after her collapse, Wall was finally able to sit up in bed and begin to put on paper the thoughts that had been spinning around in her head. She didn’t set out to write a book. The first thing she wrote was a short essay called “Staying Home,” about what it meant to be confined. When she finished the first essay, she found herself writing another called “On Determination,” which dealt with the dichotomy between her nature and her knowledge. By nature, she was a determined person used to pushing, and willing herself to do things; yet she knew that was exactly the opposite of what she needed to do to get better. As other issues came to mind, she wrote more essays. Then one day she realized her collection of essays just might be the beginnings of a book.

Wall says, “At that point, I wanted to tell not only my personal story but to tell the cultural story, the political story, the medical story…I worked on blending my personal story of illness with this larger medical and cultural story.”

And in time, “What I became really fascinated with was this idea of invisibility…and the many, many ways a person with Chronic Fatigue Syndrome is invisible. We’re invisible because we look perfectly well. It’s not always clear by looking at us that we’re severely ill. We’re often invisible because we’re at home. We’re not seen; we’re not out in the world. But we’re also invisible because the medical conversation leaves us out of the picture.

“In recent years things are changing, but back in the ’80s and ’90s there was virtually no medical language to talk about a chronic, persistent illness like Chronic Fatigue Syndrome. And that renders a kind of invisibility.

“I was interested in all of these strands - all of the ways a person with this illness is not seen. The more I wrote, the more that became a real impetus to try to unravel all these different strands and talk about the impact on the ill person and the impact culturally with now over a million people with this illness.”

A Sampling of Chapters

Within its 18 chapters, Encounters with the Invisible explores most of the personal, cultural, medical and political issues important to people with CFS.

n “Listening” – expresses the hurt and devastation felt by patients when doctors ignore their pleas for help.

n “Staying Home” – explores the frustrations of being confined and the struggle to find meaning in a life with severe physical limitations.

n “Passing” – deals with the battle to maintain a sense of self. Wall describes the inner conflict of wanting people to understand her illness, but at the same time, wanting to “pass” as normal and not be identified by her illness.

n “That Name” and “That Name.2” – looks inside the heated controversy that has raged for nearly three decades among patient advocacy groups, researchers, the medical establishment, and government officials over the name Chronic Fatigue Syndrome.

Who Should Read This Book

n Every CFS patient – Dorothy Wall gives a voice to the physical weakness, mental anguish, and emotional turmoil you are experiencing but may find difficult to communicate to others.

n Patients with other chronic illnesses – Although some of the physical symptoms may vary, if you have fibromyalgia, Gulf War Syndrome, multiple chemical sensitivity, or any of a number of chronic and controversial illnesses you will relate well to Wall’s experiences.

n Families and friends – If you love someone with a chronic illness, this book will give you insight into what they are going through and help you understand how you can help.

n Healthcare professionals – If you really want to understand what your CFS patient is experiencing and what they want and need from you, this book will tell you far more than any medical textbook.

Summary

Encounters with the Invisible is an excellent, wonderfully written book. It’s not the typical clinical description of CFS with a list of symptoms and treatment options. Rather, it’s a very intimate story about one woman’s struggle with a chronic and debilitating illness. I can say without hesitation, it is the best personal account of chronic illness in general and CFS in particular I have ever read.