January - February
Commentary and Reviews
path through chronic
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 authorís own struggle with fibromyalgia,
interstitial cystitis and SjŲgrenís syndrome. The reader needs to keep reminding himself that it is "only"
a book on chronic illness.
A concise laymanís 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 ĎAll in My Headí?" "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
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 doesnít 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 authorís 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. Wellsí 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
co-facilitator and media liason for the Greensboro CFS/FMS Support Group.