Commentary

CFIDS Sufferers Require Compassion
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 baskets, hiking,
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.”

Dave never 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 he faced.

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.