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January - February 1999

Commentary and Reviews
A path through chronic illness

A Delicate Balance: Living Successfully with Chronic Illness
By Susan Milstrey Wells
1998, Insight Books, New York.
$28.95 (Available in bookstores)

By Margaret Auten

This book reminds me of early pioneer-drawn maps giving warnings about pitfalls and successful ways to negotiate perilous, uncharted territories such as the Oregon Trail. A Delicate Balance: Living Successfully with Chronic Illness, by journalist Susan Milstrey Wells, is such a CFIDS/fibromyalgia map, more valuable because of the author’s own struggle with fibromyalgia, interstitial cystitis and Sjögren’s syndrome. The reader needs to keep reminding himself that it is "only" a book on chronic illness.

A concise layman’s textbook, A Delicate Balance is valuable for the clinician needing to stay in touch with patient issues, the caregiver needing awareness of nuances and clues posed by this "invisible" illness to avoid misjudgments, and most importantly for the patient.

Chapter topics include "The Search for a Diagnosis," "Is My Illness Really ‘All in My Head’?" "Finding a Health Care Partner," "The Search for Treatments," "From Denial to Acceptance and Back Again," and my favorite, "How To Be Sick in a Healthy World." The section on pro-actively working on doctor/patient relationships to get correct direction is valuable, as is the section on understanding limitations.

Wells "walks along beside us" as she presents the points of view of patient, physician and caregiver, to bring each of us to the delicate balance necessary to find truth. Non-antagonistic yet straightforward pros and cons on HMOs, as well as advice to physicians from the patient community, are educational tools. The humanness of eyewitness accounts personalize facts, much as those passed on by early pioneers of our country to settlers who would follow.

There doesn’t seem to be an untouchable area for this author. Wells takes everything a step further and a step deeper than other books on this subject--questions you wanted to ask, but had to find out on your own. A book that needed to be written, it is all the more valuable for the author’s own pain, which seeps through. Weaknesses are very few. The author admits to not having personally gone through the disability process, so the reader will find this second-hand advice from others the most sketchy part of the book.

All in all, Ms. Wells’ book is a remarkable feat; one can observe that she has traversed the difficult valley of bitterness, coming to the positive destination identified in the title. "Delicate" is how we feel; "Balance" to live is what we must find. In reading this Serenity Prayer in book form, one agrees with the author that finding this balance takes practice and is a daily journey. An informed, valuable and intelligent approach to this devastating illness, her book from the frontlines of fibromyalgia will hold its own alongside CFIDS classics.

Margaret Holt Auten, of Triad, N.C., is  co-editor of the "Brainstorms" CFS newsletter and co-facilitator and media liason for the Greensboro CFS/FMS Support Group.