Looking Good but not Feeling Fine

[Guest guest]

Looking Good but not Feeling Fine

'Hidden illnesses' affect more than your health

By E'Louise Ondash

HealthScoutNews Reporter

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 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. "

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

, 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.

Information on many of the so-called hidden or elusive

illnesses is available from a variety of sources

online. Learn more about:

Fibromyalgia, from the National Institute of Arthritis

and Musculoskeletal and Skin Diseases.

Post-polio syndrome, from the Polio Experience

Network.

Crohn's disease, from the National Digestive Diseases

Information Clearinghouse.

Lupus, from the Lupus Foundation of America.

Cronic pain, from the Mayo Clinic.

SOURCES: Interviews with Wrobel, Ph.D.,

psychologist, La Jolla, Calif.; Carol Sveilich,

author, support group leader and former college

counselor, San Diego; Sherry M., retired social worker

with post-polio syndrome, San Diego; Judy S., former

bank executive with chronic fatigue syndrome, Valley

Center, Calif.; and T., psychologist and Crohn's

disease patient, Boise, Idaho

Copyright © 2001 ScoutNews, LLC

Last updated 06/23/01.

This article can be accessed directly at:

http://www.healthscout.com/cgi-bin/WebObjects/Af.woa/wa/article?ap=1 & id=111415

Copyright © 2001 Rx Remedy, Inc. All rights reserved.

Site implemented by Thaumaturgix, Inc.

__________________________________________________

[Guest guest]

Looking Good but not Feeling Fine

'Hidden illnesses' affect more than your health

By E'Louise Ondash

HealthScoutNews Reporter

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 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. "

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

, 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.

Information on many of the so-called hidden or elusive

illnesses is available from a variety of sources

online. Learn more about:

Fibromyalgia, from the National Institute of Arthritis

and Musculoskeletal and Skin Diseases.

Post-polio syndrome, from the Polio Experience

Network.

Crohn's disease, from the National Digestive Diseases

Information Clearinghouse.

Lupus, from the Lupus Foundation of America.

Cronic pain, from the Mayo Clinic.

SOURCES: Interviews with Wrobel, Ph.D.,

psychologist, La Jolla, Calif.; Carol Sveilich,

author, support group leader and former college

counselor, San Diego; Sherry M., retired social worker

with post-polio syndrome, San Diego; Judy S., former

bank executive with chronic fatigue syndrome, Valley

Center, Calif.; and T., psychologist and Crohn's

disease patient, Boise, Idaho

Copyright © 2001 ScoutNews, LLC

Last updated 06/23/01.

This article can be accessed directly at:

http://www.healthscout.com/cgi-bin/WebObjects/Af.woa/wa/article?ap=1 & id=111415

Copyright © 2001 Rx Remedy, Inc. All rights reserved.

Site implemented by Thaumaturgix, Inc.

__________________________________________________