BODY AND SOUL/Keeping Fit column

[Guest guest]

The following is from the BODY AND SOUL/Keeping Fit column from the San Diego

Union Tribune August 4, 2004 by Jack .

Photographer’s putting faces on the suffering

Like many of her partners in pain, Carol Sveilich goes through much of life

disguised as a paragon of health. Only when you look behind the mask, behind the

functional facade, can you appreciate the suffering.

In her world, image and reality are blurred. Sympathy and understanding from

doubting doctors can be as hard to come by as cures. And fragile victims can

drift between denial and despair.

Sveilich, 50, is among millions of Americans whose insidious ailments are often

so undetected that they’ve spawned a new term in patient vernacular: invisible

illness.

" These are very complex issues, " Sveilich said. " It’s easy to dismiss patients

and symptoms if there is no visible sign of illness. For example, there’s no

definite test for Fibromyalgia. It’s very vague.

During the past 15 years, Sveilich has dealt not only with Fibromyalgia, which

is characterized by muscle and joint pain, but also Crohn’s disease, a

potentially debilitating inflammation of the small intestine.

She’s not one to suffer in silence. Several years ago, she formed a Crohn’s

disease support group that grew from a few patients in her Carmel Valley living

room to 150 members.

And three years ago, she marshaled her often flagging energy to embark on an

ambitious and somewhat therapeutic project: a book featuring the faces and

voices of chronic pain sufferers. They’re people like her, 55 of them, healthy

appearing on the outside and hurting on the inside.

There’s acclaimed jazz guitarist Sprague, whose psoriatic arthritis forced

him to shift the emphasis of his career from playing gigs to recording and

producing other artists. " The experience of life becomes much deeper when you

know what suffering is, " he told Svelich.

There’s the post-polio patient with chronic back pain who gets dirty looks when

she uses handicapped parking places.

And there’s the bottled-water entrepreneur, a longtime sufferer of Fibromyalgia

and Chronic Fatigue Syndrome, who rises at 5 each morning and tells everybody

he’s fine. " I use my pain as a motivator, " he told Sveilich. " Just like hitting

your thumb with a hammer, it feels so good when it stops.

Sveilich, an accomplished photographer, knew her project needed photos of the

subjects to truly resonate. So she included them - young faces and old, men and

women, people in various stages of acceptance or denial. Their maladies include

include diabetes, lupus, Sjorgren’s syndrome, hepatitis, endometriosis,

migraines and other disorders. The remedies they seek often transcend into such

fields as acupuncture, chiropractic, mediation and the use of herbs.

" Maybe 65 or 70 percent of the people I interviewed are still working, " said

Sveilich, who gave up her job as an academic counselor at the University of

California San Diego because of her condition. " One woman was dragging herself

to work at a TV station despite living with lupus, which has a lot of different

symptoms. She’s on disability now. "

" The stress of living up to everything you think you must do can exacerbate

symptoms. "

Sveilich has managed her health through trial and error, by learning to pace

herself - rest when she needs to, exercise when she can. " I needed this

project, " she said. " I don’t do sitting around well. I still envision going back

to work some day because I loved it at UCSD and I miss it.

She’s already engaged in another project, this one focusing on mood and anxiety

disorders while awaiting the October release of " Just Fine: Unmasking Concealed

Chronic Illnesses and Pain, " (Avid Reader Press). For information, visit her Web

site, www.writefaceforward.com.

~ " We all take different paths in life, but no matter where we go, we take a

little of each other everywhere. " ~

~ " If I could reach up and hold a star for every time you've made me smile, the

entire evening sky would be in the palm of my hand. "