“Why are you in a handicapped space?” asked a medical colleague.
It happened one day after a meeting. Marla Chalnick, a medical psychotherapist in Charlotte, had headed for her car, parked in a space reserved for the handicapped.
His words cut like a knife. Chalnick thought he was accusing her of poaching a spot she didn’t deserve, just because she didn’t use a wheelchair or a cane.
“I have MS,” she said.
Surprised and embarrassed, he quickly apologized, and they went on.
“While I walk just fine, I can’t go too far,” Chalnick said, recalling the experience. “I choose not to waste my steps in the parking lot.
“Not all handicaps are visible.”
That’s the thinking behind Chalnick’s short-term therapy groups. She began the groups five years ago, gearing them for patients with multiple sclerosis and struggles like hers. In the last year, she has included anyone with chronic, invisible problems.
Members have multiple sclerosis, fibromyalgia, chronic fatigue syndrome, lupus, Grave’s disease, Crohn’s disease, brain injuries, multiple chemical sensitivity–or combinations.
Like Chalnick, they don’t look sick. But they are.
Hence the group name: But You Look So Good.
They sit in a circle, mourning little losses they notice each day. They miss being able to wear high heels, garden, read books, walk their dogs. Everyone knows fatigue so great that, on some days, getting out of bed is impossible. They feel guilty about not having energy for children and spouses. They feel angry that others don’t understand.
This is the one hour a week when they can share all those frustrations they often keep to themselves. They find comfort in knowing that they’re not alone, that other people are struggling in a world where friends, relatives, co-workers, even doctors don’t always have patience for people who never get well.
Lynn Bissonette, 52, who was diagnosed with multiple sclerosis in 1982, recalled that a former business associate accused her of malingering when she couldn’t work as hard as she had.
“You could work if you wanted to,” she said he told her.
A professional counselor who works part time, Bissonette said some of her clients with chronic illnesses have told her they hear “equally stupid” comments.
A friend once read about multiple sclerosis in an old medical encyclopedia and told Bissonette that it meant “hardening of the brain.”
“That is not what it means,” she told the group. “We are confronted by that kind of ignorance.”
At another session, Chalnick smiled knowingly when Judy LeVan described her disappointment at failing to meet her goal for the week–to go to a movie.
“When I was well, I used to go to two or three movies a week. That was one of my loves,” said LeVan, 56, who suffers from multiple chemical sensitivity, fibromyalgia and Grave’s disease. “Now, I’m too tired.”
“I don’t go either,” said Chalnick, 49, who must use a cane or wheelchair in unfamiliar places.
“It’s too much work to get out of the house,” said another woman.
They laughed at their similarities. Then they spoke of their pain.
LeVan quit her job as an administrative assistant two years ago. She had struggled at the job for a year, sneaking naps at lunchtime and trying to avoid the air fresheners supplied free at nearly every desk. Then one day she just couldn’t get out of bed. She stayed that way for six months, moving only from her bed to the bathroom.
She was unable to get disability benefits, even though she said four doctors confirmed that she qualified.
“I really am disabled,” she insisted to the group. But multiple chemical sensitivity “is so unrecognized. They fight you and try to tell you it’s all in your head.”
Certain smells make LeVan ill. Perfumes, scented cleaning products, even new bed sheets and clothing. Sometimes, while she is sitting with the group in Chalnick’s office, she pulls out a surgical mask to cover her nose and mouth.
“I’m sorry, Judy,” a group member said one day. “I forgot and put on perfume this morning.”
LeVan nodded, taking no offense. But she told the others that they should avoid chemically treated products too.
