PLEASE LISTEN
TO WHO I AM
The faces of chronic fatigue
syndrome have names. Names have fingerprints unique to the universe and it
is my hand, my unique self that must deal with the difficulties of living
with CFS. I cannot speak for others and each of them cannot speak for me.
We are lumped together and labeled for research purposes, but I am about
much more than a sick body.
As you read, keep in mind that I write about things that matter to me. The tone and
style of each piece reflects my individuality. Things are said here that will never be
spoken to a physician, but a physician might learn a great deal about human endeavor
by reading each narrative.
Because of the "status" of our "syndrome", I am often caught in
what feels like a case of mistaken identity. Medical records, reports from specialists or
from social security caseworkers read like they are about someone else. Malingering.
Narcissistic. Longstanding psychiatric problems. Motivated by secondary gain. I wonder how
I could be judged so harshly.
"But... but... I started work when I was sixteen. I put myself through college. Do
you know about my workshops at conventions around the state? Do you know that I worked so
many years sick that my mind came to associate my building with fatigue? Do you know that
after I quit my career, the sadness was so deep that I could not enter my workplace free
from grief until three years later? And do you know that I have felt triumph despite the
illness because I have become strong?"
Please listen to who I am.
Individual Contributions:
The Faces of CFS was compiled by Pat Fero in Spring 1996. Authors retain
rights to their own material for future publication. The compilation is copyright Ó 1996 by the Wisconsin Chronic Fatigue
Syndrome Associations, Inc. For additional printed copies send a check or money order for
$5.00 to :
Wisconsin CFS Association, Inc., 747 Lois Drive, Sun Prairie, WI 53590.
Phone (608) 834-1001
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