Talk brings relief
Support groups help people cope with illness, but it can be difficult to find or start one
By Tracy Wheeler
Beacon Journal medical writer
If she had diabetes, or heart disease, or weight-loss surgery, Mary Briggs would know where to turn for support.
All those conditions — and many others — have their own local support groups; in most cases, more than one. But Briggs’ condition? Nothing.
“I just need to talk to somebody,” said the Springfield Township woman. “Everybody has a support group but my disease.”
Her disease is chiari 1 malformation, a little-known structural defect of the cerebellum, the part of the brain that controls balance.
The difficulties of chiari (pronounced key-ARE-ee) go far beyond balance and dizziness, though, as a lack of space at the base of the skull pushes the cerebellum and brain stem into the upper spinal canal, placing pressure on the spinal cord.
For Briggs, 39, the dizziness progressed to strokelike numbness on the left side of her body, indescribably severe headaches, leg weakness and, now, constant, debilitating pain that even five medications a day can’t tame.
And that doesn’t take into account the anxiety that comes from misdiagnoses; from being told in the emergency room that the CT scan doesn’t show anything, so go home; from having your pillow wet with leaking spinal fluid after surgery.
If only she could talk to others who had already been through all of that, “it would probably make it easier to deal with,” Briggs said. “You could say, `Hey, I’ve been through that and this is what I did,’ or `This is what happened to me.’
“But I don’t know how to go about starting a support group. It takes more than one.”
Certainly, Briggs isn’t the only one who feels this way. Despite long lists of support groups offered by local hospitals and community organizations — everything from depression to grief to attention deficit disorder to a whole host of cancers — there are still many diseases that have no outlet.
Forming a group
Karen McCann, of Marion, was once in Briggs’ situation, until she decided she would start a support group of her own after being diagnosed with chiari in 1999.
Even less was known about the disease eight years ago, so instead of trying to start a chiari-centered support group, she broadened the scope to include anyone with chronic pain.
“If you have chronic pain, it doesn’t matter what you have. You still have to deal with constant pain.”
And as it turned out, two of those who signed up happened to have chiari.
McCann started by placing an ad in the local newspaper and then being interviewed on a radio station morning program. She talked to doctors, psychiatrists and counselors, asking them to spread the word and hand out brochures.
Eight years later, the support group is still intact, attracting people with rheumatoid arthritis, fibromyalgia, back surgery, Reflex Sympathetic Dystrophy Syndrome and other pain-related disorders. The group invites doctors to speak, holds roundtables and discusses everything from coping mechanisms to filing for disability.
“Having the support of other people who have to deal with chronic pain is very beneficial,” McCann said. “Talking about it and getting it out, rather than keeping it in, keeps you from getting depressed — and I was depressed when I started the group.
“People around you try to understand, but in all honesty, they don’t. The only people who know are those who experience it themselves.”
Benefits of a group
Research has found that belonging to a group and talking to others with common problems can alleviate mental stress, making treatments more effective.
But starting a support group from scratch is a very difficult proposition. Even Mary Beth Husseini, a mental health clinical nurse specialist at Akron General Medical Center, finds it tough, and she has the built-in support of a hospital staff and marketing.
Sometimes, even ideas that seem like a slam-dunk fail to attract participants. At a previous job, Husseini tried to start a support group for women whose husbands were cheating on them online. She did several interviews on Cleveland TV. She was invited to an international symposium. But the support group wasn’t able to establish itself for long.
Add a chronic disease to all of that, and the goal of starting a group becomes even tougher.
“That’s a lot of legwork if you’re not feeling well,” Husseini said.
For some people with rare diseases, the Internet may offer support through national or international organizations devoted to those diseases. Chiari, for example, has a Web site called http://www.conquerchiari.org, with an active e-mail discussion group offering support and encouragement.
Briggs, though, needs more.
“The Internet, I don’t trust it,” she said. “I can tell by looking at you, by listening to you, if you’ve been through what I’ve been through. I need to be able to see you.”
One important source in starting a local support group may be your doctor, said Dr. Robert Flora, vice president of the medical staff at Summa Health System.
“If it’s something real rare,” he said, “the doctor can say, `Hey, we have a patient with this, we can call her and see if she’s interested in this.’ We can broker that kind of meeting.
“We’ve run into situations like this. Even our interstitial cystitis support group, it wasn’t started in Akron until one of our patients started it.”
Not all doctors will be so helpful, though. The office staff has little free time, Husseini said, and many medical offices are paranoid about violating HIPAA, the federal Health Insurance Portability and Accountability Act that maintains medical privacy.
McCann suggests the following steps in starting a support group:
• Give your group a name: Giving the group a title sounds professional and enables the public to identify the group in advertising. McCann chose the name Marion Area Chronic Pain Group for her group.
• Find a location: Many places are willing to donate a room for such a group. Check hospitals, churches, city halls and libraries for a conference room that might be available.
• Decide on the date and time: Before publicizing the group, set a weekly day and time that your group will be able to meet, making sure the schedule suits the facility you’ll be using.
• Advertise: Contact local media about free listings. (The Beacon Journal runs a free listing of health-related meetings every Tuesday.) Also, post notices on hospital bulletin boards and doctors’ offices, if allowed.
Briggs is hoping a local chiari support group can be born soon. She needs it. And she believes her husband, Tom, needs it.
Though Tom has been extremely supportive by taking over all the household chores and boosting her emotionally, there’s only so much he can truly understand about how she feels. Plus, she said, he’s now forced to carry an unfair burden in the marriage.
“I know this is hard on him,” she said. “It’s hard on me. I used to be a very independent person. This disease has taken many things from me.”
Anyone interested in forming a support group with Briggs can contact reporter Tracy Wheeler at firstname.lastname@example.org or 330-996-3721.