KatCarney

"Hidden Illnesses - Looking Good But Not Feeling Fine " posted on June 27, 2001



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Looking Good But Not Feeling Fine
HealthScout

June 25, 2001
SATURDAY, June 23 (HealthScoutNews) -- Sherry M. is not surprised by the occasional disgusted
glance she gets after pulling her car into a handicapped parking place. After all, she looks perfectly
healthy.

But because Sherry had polio as a teen-ager, today she has a weak left leg, can't raise her arms
above her shoulders and endures chronic back pain because of the lack of strength in her abdominal
muscles. She finds it difficult to move quickly, has little endurance and can't carry packages of any
weight.

"I get stares and looks," says the 65-year-old San Diego resident, who asked that her full name not
be used. "No one has ever commented to me, but their looks say, 'Why are you parking there?' "

And she's not alone.

Millions of Americans have what some call "invisible disabilities" or "hidden illnesses." They look
well, but they deal with serious physical problems -- everything from post-polio syndrome, lupus and
hepatitis to diabetes, Crohn's disease and irritable bowel syndrome.

Still others contend with so-called "elusive illnesses" like chronic fatigue syndrome, fibromyalgia and
chronic pain. Medical experts say these are particularly difficult to live with because many people -- both
doctors and the public alike -- aren't convinced that all elusive illnesses are true illnesses.

"These people endure not only the suspicions of friends, family and co-workers, but their own
self-inflicted doubts about whether their condition is real," says Carol Sveilich, a former university
counselor who gave up her job because of Crohn's disease and fibromyalgia.

"Sometimes they wish that they actually appeared disabled so that people would take their illness
and limitations seriously," Sveilich says. "Others try to appear normal and healthy so they blend in, but
this impacts their symptoms, stamina and pain."

Sveilich, who led a support group for nine years for people with Crohn's disease and ulcerative colitis,
both potentially life-threatening, says she's writing a book about people who suffer from invisible
illnesses. Their portraits and narratives, she says, will reveal that looking "just fine" does not always
mean a person is well.

"People in my support groups used to say that they were the healthiest-looking bunch of sick people
in town," Sveilich says. "I want my book to reveal the special challenges faced by people with invisible
illnesses."

Social support is crucial

One of those challenges is a lack of social support, says San Diego psychologist Michael Wrobel,
who counsels people with hidden or elusive illnesses.

"They don't get the social support that someone with an obvious illness gets," Wrobel says. "The
person with an obvious disability learns to navigate through social situations because they get other
people's reaction to them. They don't feel so alone, and the support they get ends up being healing as
well."

Those with hidden illnesses, though, can find it difficult to reach out because they often are accused
of malingering or having a bad attitude, he says.

"Their friends and family say that it's all in your head, or they want to know what you did to cause
the illness," Wrobel says. "That's a lot of stress, and if it continues, it can have an effect on your
immune system. Your muscles tense, and this makes the pain worse. It's becomes a vicious cycle."

Most people are more than eager to help someone with an obvious disability, Sveilich adds, "but
there is a reluctance to make accommodations for people who have hidden conditions, who often suffer
a great sense of loss for all of the things they can't accomplish because of their illness."

That's the case for Judy S., who mourns for the life and friends she once had. She, too, asked that
her identity be protected.

"Ten years after getting mono, I'm still ill," says the 57-year-old former bank executive who lives in
Valley Center, Calif. "I have chronic fatigue syndrome, low blood pressure problems and have to wear
sunglasses all the time because the light hurts my eyes. I've lost most of my old friends because our
schedules can't ever be the same. I need a lot more rest now."

"It's very frustrating because many people think chronic fatigue syndrome is a psychological
disease, but it's not," Judy says.

'I've had to learn to say, no'

Sherry, the San Diego woman living with the effects of childhood polio, suffers similar frustrations.

It's difficult, she says, to always have to explain why she can't do a lot of things that people assume
she can. She earned a master's degree and raised three children despite her physical limitations, but
the retired medical social worker says she has to remind even her peers in her polio support group that
she can't take on the work of an able-bodied person.

They forget, she says, because she's not in a wheelchair.

"I've had to learn how to pace my energy and time and say 'no,' " Sherry says. "They don't realize
how much energy it takes to live daily life."

Nancy T., a 37-year-old Idaho psychologist, also has been sidelined from her active life since she
was diagnosed with Crohn's disease in 1997.

"Sometimes keeping a positive attitude is harder than dealing with the physical part of the disease,"
says Nancy, who asked for anonymity. "I used to be a very active person, but the disease changed my
life. I'm coming to terms with my limitations, but it's the biggest challenge of my life."

Still, she's on the right track, according to psychologist Wrobel.

"People with hidden illnesses must integrate them into their lives, and they will have much less
pain," Wrobel says.

"They also need three things: control over their lives; predictability, which means you can adjust to
your condition better; and an outlet that permits them to talk about their illnesses, like a support group,"
he says. "If they don't have this, they'll feel more and more isolated."

What To Do

If you have an invisible or elusive illness, you'd be well-served, Sveilich adds, to:

Realize you're not alone. Millions are living with hidden illnesses.

Believe in yourself, even if others question your illness.

Remember that you're not responsible for other people's reactions.

Speak matter-of-factly whenever you talk about your illness.

Educate yourself about your illness, and ask the right questions.

Join a support group.

Learn to honor your limitations and to say no -- the first step toward taking care of your needs.

See flare-ups as challenges, not crises, and accept hardships and setbacks as part of your
condition.

Embrace the Buddhist notion that pain and suffering are part of being human, and maintain hope that
tomorrow will be easier.

Realize that your invisible illness makes you stronger and more resilient in ways you have yet to
discover.