CFIDS from a Husband’s Point of View
By Robert Joe Stout

“Today was a good day,” my wife told me. She was able to take our visitor to a friend's house to get a facial.

Then she took a nap. With luck, she'll feel strong enough to go out to dinner tonight. "I'm getting fat," she complains.

"All I do is eat.""All I do," I reply, "is cook and clean and get our son ready for school."

I say it with a smile: I don't want her to feel guilty. Fortunately, we've gotten past that. For the first two years she had CFIDS she tried to do too much, and I compensated by trying to do too much, and we'd wind up sitting across from each other in little puddles of exhaustion, each hoping the telephone wouldn't ring or our son wouldn't wake up and need anything. It was hard.

Hundreds of thousands of Americans know they suffer from CFIDS. Hundreds of thousands more have it but have been diagnosed with something else. But very few Americans who don't have it seem to know anything about it. Or believe that it exists.

Including doctors. Our friend Barbara spent six years battling what her doctor defined as "severe depression" before she discovered she had chronic fatigue syndrome. She lost her husband, her job and custody of her two children. A new doctor prescribed bed rest and she stayed in bed for a year. She can now take walks and live by herself, but she still spends most of her time resting. And seeking other cures.

We've sought other cures too. My wife has read hundreds of newspaper and magazine articles. She's been to seminars. She's been to specialists. She's been to chiropractors. She’s done water aerobics. She's taken gamma globulin. She's taken antidepressants. She's taken muscle relaxers. She's taken Hitachi mushroom pills. She's taken herbs to control her adrenalin flow.

Some of them help a little. But none of them is a cure.

Her symptoms are so pervasive she sounds like a hypochondriac. Fever. Joint pain. Exhaustion. Hypersensitivity to light, to noise. Inability to concentrate. Mention one or all, and store clerks, neighbors, waiters, relatives and friends either have a cure or an opinion. Every time she turns around my wife gets another "you should do this . . .” or "I've heard . . . ."

We either hear about what someone’s ill mother-in-law took, or we get the dreaded "I think I have that! I'm tired all the time too!" from hairdresser-housewife-PTA president mothers of three and ski-vacationing paramedics and bicycling-to-work book saleswomen. They all have a right to be tired, but none of them has the slightest inkling of what CFIDS tired is like.

I know. I've seen my wife lie for hours unable to move. I've heard her cry out in her sleep because the slightest movement caused her pain. I've watched her try to do simple things she once could do and fall away, a quivering jello of frustration and loss. I've winced as she's snapped at some imagined slight or hurt.

My wife doesn't look sick. Her constant fever gives her face a rosy flush. The few pounds of weight she has gained make her seem healthy and robust. Because stress aggravates her condition, she tries to avoid stressful situations. This gives her an aura of calm competence and being in control. Even our son sometimes forgets that she can't do the things other mothers can do.

"It's a very unsexy disease," my wife sometimes complains. Since it's not life-threatening, it doesn't get the play that AIDS or cancer does. Doctors don't like it because they can't biopsy it. Scientists haven't been able to give it a jazzy acronym or name. (Epstein-Barr sounds like a law firm, CFIDS like a government project voters would like to turn down.) Talk show hosts don't propagandize it because it doesn't fit the sound-bite tragedies they can exploit so well.

My wife and I have learned to cope. We actually do quite well. But it's taken a lot of giving up and letting go of things like going out dancing, vacation hiking, flower gardening and doing our own house repairs. She had to set her own career aside, and I've modulated mine to become a more-at-home house-husband sort of journalist. In time, we know, doctors or scientists will come up with definitions, understandings and possibly even cures for her "secret disease." Until then, we play along at quiet lives, exulting over cribbage wins and helping our son grow.