By Daniel J. Vance
"I look normal on the outside, yet on the inside I sometimes feel like dying," said Steve, a 47-year-old media executive for a $15 million international non-profit organization. He has Chronic Fatigue Syndrome (CFS).
The Centers for Disease Control and Prevention say 500,000 Americans may have it. To be diagnosed with CFS a person must experience six months of severe chronic fatigue excluding other known medical conditions; and also four other symptoms on a list that includes severe short-term memory problems, muscle pain, multi-joint pain, headaches, non-restorative sleep, post-exertional malaise lasting more than 24 hours, sore throat and tender lymph nodes.
Symptoms often mirror chronic mononucleosis or even multiple sclerosis. It has no known cause. Perhaps half of those affected recover in five years.
"In the late '80s, I was working on a project with Kevin Costner," Steve told me. "We all kept passing the flu back and forth. I was putting in 16-hour days and seven-day weeks. Then I suddenly got sick and was bedridden for three months and in the house nine months total. I knew something was drastically wrong."
The dozen or so doctors he saw usually said his illness was psychosomatic, meaning it had no real physical origin and was "all in his head."
"I never believed them," said Steve of that difficult time. "Pain is pain and I could gauge it. What I had was real and identifiable bone, joint and muscle tissue pain. My body was screaming in agony from pain, fatigue, and sleep deprivation."
Another aspect of CFS was handling comments from friends and coworkers. No one believed him. Just pull yourself up by the bootstraps, they said. His career "took a tailspin" because of CFS and he even became self-employed so he could adjust his work schedule according to pain levels.
He said, "On the outside I looked fine. People thought I was a hypochondriac and many still do. You get comments all the time."
Recently, after 15 years, he finally found a believing doctor and his life has changed. "Now I often can work 10 hours a day," Steve said of the positive results of his new treatment that includes diet modification and sleep medication.
"People with chronic pain because of CFS are members of a club you don't want to be in," he said. "People not experiencing it have a very difficult time understanding."