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3.1 Are there other useful books out there about coping with chronic illness? #2




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This article is from the Inflammatory Bowel Disease FAQ, by Susan Blank smb@panix.com with numerous contributions by others.

3.1 Are there other useful books out there about coping with chronic illness? #2

"Lupus- Living With It: You Don't Have to Be Healthy to Be Happy", Suzy Szasz.
(Prometheus Books, 700 East Amherst Street, Buffalo, NY 14215, 1995).
ISBN 1573920231 (paperback). Author with lupus
discusses living with chronic illness.

(The following is a review of the 1991 edition).
I loved the title of this book but was disappointed in the book
itself. The author was diagnosed with Lupus at thirteen and is on
megadoses of Prednisone (up to 160 mg/day!) from then on despite being
given other immunosuppresants as well. She is a classic over-achiever,
expecting herself to get straight A's right up to getting several
masters degrees and a doctorate, and often carrying more than a normal
course load, despite her disease. She takes a minimal amount of time
off when her disease forces her to, but goes right back to work,
sometimes even as she lies in bed. She, like many of us with chronic
diseases, sees hospitalization as the ultimate defeat. I kept waiting
for her to realize that she needed to slow down and take it easier,
but she never does! I wonder how much of her hyperness is due to the
prednisone, she seems totally unable to rest or relax. At the time she
wrote the book she is 32 and has severe osteoporosis that causes ribs
to crack and vertebrae to collapse if she moves too sharply. Her
height has dropped from 4'10" to 4'7" and she has to wear a back
brace, and has muscle weakness from the steroids. but she is still
working as a research librarian and writing books in her spare time.

This is a somewhat scary book for those of us on long-term prednisone,
a real warning of the price we may pay in the long term. However, her
courage in facing her difficulties and pursuing her goals despite
them, as well as her frank advice on selecting a doctor and dealing
with the medical establishment, gives the book some value. Her father
being a doctor and her own research bent, mean she is as knowledgeable
if not more knowledgeable about lupus than her doctors, and takes a
strong role in determining her own treatment. If nothing else, a close
look at living with severe lupus makes IBD seem not so bad!
_________________________________________________________________
"Meeting the Challenge: Living with Chronic Illness", Audrey Kron.
(Audrey Kron 1996). ISBN 0963387715 (paperback).

"Patient Power: Overcoming Chronic Illness", J.M. Galbraith. (Benchmark
Books, 1995) ISBN 0942246020 (paperback).

"Sick and Tired of Feeling Sick and Tired...Living with Invisible Chronic
Illness"- Paul J Donoghue Phd., and Mary E Siegel Phd. (W.W. Norton &
Company. Inc., 1994). ISBN 0393311546 (paperback).

"Taking Charge: Overcoming the Challenges of Long-Term Illness", Irene
Pollin and Susan K. Golant. (Time Books, New York, 1994).
ISBN 0812922581 (hardcover).
"Taking Charge: How to Master the 8 Most Common Fears of Long-Term Illness",
Irene Pollin and Susan K. Golant. (Time Books, New York, 1996).
ISBN 0812927001 (paperback). (later edition of first book?)

(Review is of first book listed)-
This book I did find useful. I often find that the medical
establishment is very good at dealing with the physical side of
disease, but do little to help you with the emotional and social
aspects. This book is especially useful for the newly diagnosed with
any chronic illness as it deals extremely well with the various
emotions that occur as you come to grips with the diagnosis. It also
deals with the fears that are involved (fear of dependency, fear of
death, fear of abandonment, etc.) and other issues such as dealing
with the handicapped stigma, isolation, telling others about your
disease (should you or shouldn't you "come out" at work), etc. It also
talks about different coping styles and how a mis-match between you
and your relatives-one needing to talk about it, and one unable to-can
cause difficulties in your relationships. I was glad to see that it
was extremely supportive of support groups, recommending them many
times as a way of coping emotionally and practically with the disease.

"When Mommy is Sick", Ferne Sherkin-Langer, R.N.. (Concept Books, 1995).
Reading Level- Ages 4-8. ISBN 0807588946. (hardcover).



 

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