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