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Winter
2000
Readers’
Forum
More stories of recovery, please
I have been struggling with chronic
fatigue and immune dysfunction
syndrome (CFIDS) for two and a half years. I am making slow but steady progress. Why don't you feature
articles about people who have recovered? In my very small orbit of acquaintances I have spoken to approximately
20 people who have recovered. Talking to these people is wonderful medicine and gives me much hope. Whenever
I receive your publication I always hesitate to read it. It usually depresses me because it is filled
with such negativity. I realize the CFIDS population includes people who are very sick and remain very
sick. But there are people out there who are doing well and I would like to read more hopeful articles
about people who have gotten better. Hope is very important with this uncertain disease.
Jane Alleger,
Westmont, N.J.
(Editor's Note: Much of the information and personal accounts
in the Chronicle are for and about those individuals who remain very sick, since they still comprise
the majority of our readership. However, we often include inspirational stories of recovery and triumph
over CFIDS, two recent examples being Thomas Oates' account of finding peace and improvement by living
within his energy envelope (Sept./Oct. '99) and Kebbie Cannon's story about winning horseback competitions
despite her illness (Nov./Dec. '99). We hope that as research and treatment efforts advance, we will be
able to feature even more positive stories in the future.)
Don't overlook pediatric patients
I commend The CFIDS Association of America
for raising
with the Centers for Disease Control and Prevention the urgent need for research in a range of crucial
areas. One area I hope will be studied carefully is that of pediatric CFIDS. Children with subtle problems
of any kind are less likely to receive help (medical or educational), due to the emphasis on severe cases.
Medical recognition of milder presentations is sometimes delayed by decades, possibly causing extremely
handicapping secondary emotional and behavioral problems.
Also, children in families where multiple
family members have CFIDS may be overlooked because they do not seem "as ill" as the adults, or medical
practitioners are concerned about upsetting the child about the possibility that they might experience
a similar long-term outcome. A family with one person with classical CFIDS is already heavily burdened.
Researchers and clinicians must take great care not to add to this burden late and/or erroneous diagnoses
and inadequate support.
Some clinicians think that children are merely imitating the illness behavior
of another family member, usually the mother. While all possible effects of CFIDS in a family must be
studied objectively, great caution is called for before placing "blame" on the parents or child. When
it comes to family interactions, appearances can be very misleading, and false accusations can cause a
great deal of stress.
Kate Andersen, M.Ed., Delta, British Columbia
Learning to live with CFIDS
The letter about realistic self-help for persons
with CFIDS in
the November/December 1999 issue really struck a chord. I found out I had CFIDS in May of 1993, even though
I was sick for two years prior. I was in a high pressure sales job, in a very bad marriage and living
a fast-paced life in New York City. I refused to stop working and continued to get sicker until I finally
"broke down" in the office and had to be taken out. My then-husband and my family couldn't understand
what was going on and kept putting more pressure on me to keep up with my "housewife" duties. I guess
you could say that I was paddling to keep my head above water and just kept drowning. Something had to
give.
Finally, I made the lifestyle changes that have helped me get better. I went on disability,
moved to the country, got out of my destructive marriage and distanced myself from the individuals who
felt they could not support me. I now surround myself with positive, caring people. I'm still very sick,
but so much better than seven years ago. I agree with the letter's author that "it is useful to distinguish
between those things we can control and those things we can't."
I wanted to share with Chronicle
readers that in my case, I couldn't change the fact that I have this horrible disease with a funny name,
make my family support me or make my ex-husband understand. All I could change is myself.
Bonnie
Dillenbeck, Cape Vincent, N.Y.
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