CFIDS Sufferers Require
By Lynn Stutheit
Dave was once the only man
in our chronic fatigue syndrome/fibromyalgia
wellness group. He had a wonderful sense of humor, intelligence, an ability to listen to others, a desire
to regain his health, and a zest for life. At 40, Dave was engaged in a familiar battle: he had chronic
fatigue and immune dysfunction syndrome (CFIDS) and fibromyalgia (FM).
I imagine the worst part
of having CFIDS for Dave was facing his male friends and trying to explain his symptoms. Illness often
seems to make a man less of a man in the minds of others. I’m sure Dave would rather have been shooting
or skiing with his friends instead of explaining his illness to them. I’m also sure
he would rather have been a father engaged in
a career than relegated to a monthly disabil-ity check
and visiting doctors who passed him off as “another one of those CFIDS hypochondriacs.”
spoke of his divorce, but I’m sure the stress created by his CFIDS played a part in it. For all of these
reasons, I’m glad Dave found a safe place to interact with people facing similar challenges—a CFIDS support
group. Together, we educated ourselves with the latest information and placed cautiously measured hope
in the suggestions made by other group members. Dave always had something to share about the latest studies.
He was a very practical, plainspoken, get-to-the-point person, so having a disease that came with so much
confusion and so few answers was not his style.
Dave’s circumstances made it necessary for him
to move out of town, but he occasionally phoned me to check on my health and discuss new information.
He was happy to hear that I was greatly improved and interested in the path I’d taken to get there. All
the while, he must have been silently wondering when his own healthy days would return. Dave said he’d
started attending a head injury support group and that many of these people had the same challenges that
One day, Dave called again, sounding upbeat as ever. Slowly, he disclosed that he had
an inoperable tumor in his brain. Optimistic as ever, Dave spoke of the great medical support he was receiving.
After so many years of the physical and emotional struggles he suffered with CFIDS/FM, he had finally
found caring medical professionals and a community that understood his challenges. For the first time
in years, he was encouraged and supported by those around him.
Why had it been so different upon
his CFIDS/FM diagnosis? Because the tumor was life-threatening, whereas people don’t die from CFIDS—they
die with it.
I was saddened to learn of Dave’s eventual death, but I was angry with all of those
who did not listen or support Dave before he had a tumor—friends, physicians, and others. As a CFIDS sufferer,
the medical community and others labeled Dave a hypochondriac or a person with mental baggage. I can only
be consoled by the thought that the support group I started was there for him in an otherwise very lonely
world when he most needed friends.
How sad it is that Dave had to face death to receive compassionate
and professional care from the medical community and acceptance from the public. Someone facing a tumor
is courageous, yet the courageous individuals facing these ugly and misunderstood diseases with dignity,
perseverance, and humor are left isolated and misunderstood.
This past New Years’ Day, I raised
a toast to Dave, as well as to those who continue to face the ravages of CFIDS/FM with dignity, humor,
and courage. I hope this is the year that a more compassionate approach to people with CFIDS/FM is accompanied
by a cure for these debilitating diseases.
Lynn Stutheit is a PWC
in Fort Collins, Colo. where
she works as a freelance writer and a multimedia reporter.