Founder of Health Rising and Phoenix Rising
"A typical experience will be the resident comes in, looks at my folder, sees that I have chronic fatigue syndrome listed as my primary diagnosis, and then says to me, 'Well, I think that must be what I have,'" she recalls, laughing. "You sort of learn that there's no point, that you sort of have to control your anger."
The condition known as chronic fatigue syndrome is mysterious and complex. It has stumped the medical system for centuries. There's no test for it, which Kelemen and others say, along with its current name, makes the condition easy to dismiss.
"You might just as well call our illness 'must sit down disorder,'" she says. "It's just universally hated."
For Kelemen, chronic fatigue syndrome has been far more debilitating than the name would suggest.
"Fatigue isn't anywhere near what it is, you cannot move," she says.
Kelemen says she developed the disease about 20 years ago, though it took several years for her to pin down a diagnosis. She'd always been active and athletic. She was never depressed. Then she got really sick working in Angola and she just wasn't able to bounce back.
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