When people ask you how you are, they may not really want to know. And even if they do—and you tell them—will they get it?
“When someone with MS asks me how I am, they really do want to know— and they understand,” said Maureen Kuterka, leader of a “But You Look So Good” self-help group in Toms River, New Jersey. “If I tell someone without MS that I'm fatigued, they might say, ‘I know; I'm tired, too,' but they don't get that MS fatigue is entirely different.”
People with MS often find solace in talking with people who get it. So do family members and caregivers. For anyone who has been touched by MS, self-help groups may be wellsprings of friendship, information, and support.
“Do you need anybody?”
Ann Oswald, a member of the Professional Women's Self-Help Group in Manhattan , remembered a newly diagnosed visitor who spent a good part of the meeting crying. “One thing she talked about was how she falls,” Oswald said.
“I told her that I had fallen the other day and scraped my cheek. Strangers in the street think you have been a victim of domestic violence when your cheek is scraped up, and I told her how uneasy that made me feel. When she left, she said she felt the best she had felt in a month because we really do get it.”
People in self-help groups have experience, and can share tips on anything from energy conservation to keeping cool.
The members of the Coping with MS support group** in Manhattan recalled a time when one of their members was afraid she might lose her doctor. Scared she would be stuck with insufficient care after a bad experience with a temporary nurse, she asked the group for suggestions. Members provided her with a list of doctors that they had seen, with personal anecdotes about each one.
( ** Support groups differ from self-help groups in that they are
led by professional therapists rather than group members.)
“Could it be anybody?”
Some people try several groups before finding the one that fits them. “People need to understand that there are many kinds and styles of peer support,” said Rosalind Kalb, director of the Society's Professional Resource Center . “If one group doesn't meet personal needs or expectations, people can try others or even talk with their chapter about starting a different kind of group.”
RoseMarie Sterling did just that, co-establishing the African-Americans with MS self-help group affiliated with the Northern California Chapter. “I wanted to embrace national, social, and ethnic concerns of those who are of my cultural likeness,” Sterling said. A friend told her about other African-Americans with MS in her aquatics class, and Sterling took the initiative. She still attends meetings with other self-help groups that are culturally dissimilar to her own, to share even more information.
Paul Prill of Hudson , Ohio , has led an all-male self-help group for five years. “Men and women don't have the same problems,” Prill said. “A few of the guys have gone to groups with women and feel they get ignored. Since men are the minority, we don't always have a voice. We open up a little more than we would if the opposite sex were here.” The group talks about everything from sports to politics, but they always go back to MS. “MS is how we met, and it's what keeps us together,” Prill said.
“How do you feel by the end of the day?”
Self-help groups give comfort and encouragement simply by allowing members to see that others are living well with MS.
“I have run into a few people that have progressed more than I have,” Prill said. “It helps me to know how they dealt with it and what to expect.” He has been living with primary-progressive MS for 10 years, and it has been getting worse in the past year. “You can't be on a high all of the time. But if someone else has been through what I'm going through now, and they survived—I will, too,” he said.
“Gonna try with a little help from my friends”
Self-help groups may not be for everyone, but you can't know until you try them out. “With a little help from my friends,” many people learn how to handle various symptoms of MS, maximize their independence, and improve their physical and emotional health.
For more information about the self-help groups in your area, call your chapter. 1-800-FIGHT-MS will connect you.
Depression requires medical care
Self-help or peer support can certainly lift the spirits. But if you are considering joining a group because you feel sad, irritable, apathetic, or worthless most of the day, for days at time, you may be experiencing clinical depression. Keep in mind that clinical depression must be treated by a qualified health-care professional. If you suspect that you may be clinically depressed, contact your health-care provider without delay.
Depression and MS (Society Brochure)