Health & Science : Sunday, May 27, 2001
Copyright © 2001 The Seattle Times Company
By Patrick O'Neill
Newhouse News Service
Newt Hagar has jumpy legs.
Lowell Gere has breast cancer.
Jeanie Porter's illness has a name most people have never heard.
These Portland residents have quite different medical conditions. But they have one important thing in common: illnesses that are poorly understood by co-workers, friends and relatives. And they all have sought understanding, comfort and information through support groups.
The granddaddy of all support groups, Alcoholics Anonymous, which was founded in 1935, proposed a radical idea: Give alcoholics a way to take control of their lives. More recently, self-help groups for a wide variety of physical and mental conditions have proliferated, helping sufferers overcome their isolation and public ignorance.
Health-care organizations often help coordinate support groups. Such groups usually are member-run by people with such ailments as cancer, brain injury, burns, lupus, multiple sclerosis, Parkinson's disease, Tourette's syndrome and stroke.
Comparing treatments, doctors
Experts say advances in medical knowledge have created an information overload for doctors and patients alike. Constrained by managed care, doctors have less and less time to spend with patients. And patients with chronic illnesses have more questions and more options for therapy.
About 10 years ago Hagar, 82, noticed his legs would jerk involuntarily, particularly when he was drifting off to sleep.
Eventually his doctor diagnosed him with restless-leg syndrome, a common but mysterious disorder with a variety of symptoms ranging from jerking to a "crawling" sensation under the skin.
The retired manager of a paper plant joined the Portland Restless Leg Syndrome Support Group, which now has a mailing list of 160 members. The group meets bimonthly to exchange information about medications they've tried and doctors they've visited.
"Most members are surprised to find that so many people have it," he said.
Like many such organizations, the RLS group invites expert speakers - neurologists, pharmacists, sleep specialists - to give up-to-the-minute information on research and treatments.
One organization has tracked the spiraling growth of support groups.
1 in 5 use support groups
Ed Madara, director of the American Self-Help Group Clearinghouse in Cedar Knolls, N.J., says the number of support groups of different ailments listed in the organization's directory has ballooned from 332 in 1986 to 703 in 1998.
Madara says nearly 1 in 5 Americans has been involved in support groups at one time or another. And at any given time, 7 percent of the population is participating in a group.
The clearinghouse has published a directory of self-help groups since 1986.
"Many people feel all alone with their problem," he said. "These groups act as surrogate families."
A growing number of groups help those who suffer from chronic medical and emotional conditions. Often a fine division exists between constituents. For example, Madara said, separate groups serve the needs of suicide survivors: Some groups are for friends and family members of suicide victims, while others serve parents of children who have committed suicide. One highly specific bereavement group is for people who have lost loved ones in airplane crashes.
A kind of safe haven
Sandra Haber, a New York psychologist who works with cancer patients, is interested in the relationship between physical illness and mental condition.
"One of the problems when anyone has a diagnosis of a medical condition is that they have feelings of aloneness, isolation and sometimes stigma," she said. "It immediately sets them apart from family and friends."
But groups give people with medical disorders a kind of safe haven.
"When you go to a support group, you're immediately normalized," Haber said. "It's the norm for the group to have this illness. Your experience needs no explanation. There's an immediate validation and sense of well-being."
One of Gere's worries was that he had never met another man who had breast cancer. A cancer diagnosis was hard enough to cope with. But the rarity of his condition disturbed Gere.
"I didn't realize men could get breast cancer," he said.
It was sometimes hard for friends to understand his medical problem, he said. "The hardest thing is to explain that you have breast cancer and that 1,500 other men will get it this year."
Gere participated in the Race for the Cure, a breast-cancer benefit, and attended some women's breast-cancer support-group meetings. But he realized that as a man with breast cancer, "you're a real minority."
He attends a men's support group that meets once a month, drawing three or four members.
"You just don't feel quite so strange when you realize that there are some other men out there with the disease who you've actually met," he said.
Copyright © 2001 The Seattle Times Company