What should I tell friends or employers who ask about CFS/ME/FM?

Don’t you get tired of explaining?! If you explain “Chronic Fatigue Syndrome” the likely response is “oh yeah, I get tired a lot myself,” or “isn’t that the ‘Yuppie Flu’?” Both responses are justifiable grounds for homicide, in my opinion! At worst the word “fatigue” trivializes the severe and multiple symptoms of this illness, much like calling a hurricane a strong wind. Dr. Byron Hyde informally polled acquaintances and Dr. Lenny Jason did a formal study of name attributions. Both concluded that “Chronic Fatigue Syndrome” trivializes the illness and is not thought of as a serious illness, whereas Myalgic Encephalopathy and other more “medical terms” are much more respected. So I try not to use the term. If you have CFS, call it Myalgic Encephalopathy, much like the British term for this illness; if you have FM, call it fibromyalgia. And if someone rudely asks, “what in the world is that?” then simply reply, “it’s like arthritis, but it affects muscles and causes weakness.” People understand “arthritis” and they are empathetic with “weakness.”

I generally do not recommend that you discuss your illness with acquaintances. Many people misunderstand CFS/ME/FM. They may fear that you are infectious, or may avoid you for other reasons. Any way, unless you’re seeking pity there’s no reason to “wear your illness on your sleeve.”

Whether you discuss CFS/ME/FM with your employer is a debatable point. On the positive side, once your employer knows about the illness, he or she may be more empathetic or at least understand that you cannot perform like you used to. Most would agree that having CFS/ME/FM qualifies you for ADA benefits. In a nutshell the Americans with Disabilities Act applies to large companies, provides for some accommodations (as long as you can keep up with peers and perform the regular duties of your job), and provides certain protections against firing and discrimination. On the negative side, employers may view PWCs as ill, too impaired, or a possible liability for the company. In general I would not inform an employer about your condition unless you receive a poor job evaluation or you are unable to keep up.
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