Ed.Madara@f140.n150.z1.fidonet.org (Ed Madara) (08/10/90)
Index Number: 9679
There are many thousands of people whose experience of pain and/or
disability defies a medical diagnosis. NORD, the National Organization
for Rare Disorders, indicates that for fifty percent of those diagnosed
with a recognized rare illness, it took over seven years from the onset
of the symptoms before they finally received the diagnosis. Up until that
time, all knew that special hell associated with simply "not knowing"-
the almost endless tests, the horrible frustration, the lonliness, etc..
When there's "no name for the pain," there are also the accusations
and/or personal self-doubt of it being "all in your head," and you begin
to wonder if it could be psychosomatic, or if you might indeed be some
type of hypochondriac. indeed, the suffering and accusations are
experienced again and again for whole waves of people with not-so-rare
"new illnesses" (Post-Polio Syndrome, Lyme Disease, Chronic Fatigue
Syndrome, environmental illness, L-tryptophan poisoning, etc.) before
that particular diagnosis becomes widely known, understood and accepted.
>
Well, one woman named Ula knows that emotional pain because she still
lives in that limbo. It began over four years ago when she, unable to
walk, was taken to the hospital and stayed there a month beginning that
series of tests and examinations by specialists that still continues
today. She with her symptoms remains a puzzle to the doctors. But in the
last couple of years, she has thought about the possibility of reducing
the suffering and isolation of others like herself by starting a support
and information-sharing network. Members could benefit from learning that
they are not alone, sharing their support and strengths, and pooling
practical information on how to better cope. They might also advocate for
better understanding, needed treatment and research. It might have a name
like the Pre-Diagnosis Support Organization, or a better name. But in
order to make such a network a reality, Ula recognizes that she needs the
help of a few others who recognize the need, share the dream, would be
willing to put in some volunteer effort with her to get this network
operating.
Those interested in helping TO START such a support and information
network, can contact Ula Barrack at 11 Woodbridge Place, Staten Island,
NY 10314. She would also be interested in hearing from professionals who
may be interested in supporting such efforts, to include those who may
simply be able to advise on specific articles or resources dealing with
this issue that could help patients to better cope or understand.
- Ed at the American Self-Help Clearinghouse
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!150!140!Ed.Madara
Internet: Ed.Madara@f140.n150.z1.fidonet.org