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Alternative Self-Help Groups

by Jennifer Sheeley with Gary Sullivan

 
     
     
 

Does the idea of telling your story to a roomful of people make you uncomfortable? Do you live in a rural, out-of-the-way area? Do you have serious mobility issues that might make your regular attendance difficult?

In the Information Age, peer support can be found by lifting a receiver or clicking a mouse. And these options—telephone conferencing, Internet chat rooms, online message boards, and e-mail groups—provide more privacy than face-to-face meetings.

“I can come here, cry with some of you, have some of you cry with me, laugh so hard I cry, and no one sees my mascara running down my face,” one message-board user wrote.

Just a call away
Most chapters of the National Multiple Sclerosis Society provide peer support on the phone. The Dakota Chapter, for instance, offers conference-call groups: Guy Talk, Gal Talk, and Care Partner Chat. Calls are made to a toll-free number and last about an hour. As Marcia Olson-Horst, vice president of Programs for the Dakota Chapter, noted: “The conference-call groups are great for people who wouldn't be able or willing to travel to a self-help group.” Call your chapter at 1-800-FIGHT-MS and ask about telephone self-help programs in your area.

Instant online buddies
Web sites such as Yahoo and Excite provide chat rooms for people with similar interests or experiences to “talk” to each other via the World Wide Web. Nothing new, right? What's new—or relatively so—are chat rooms devoted to people with MS. In partnership with the National MS Society, MSWorld features rooms devoted to specific regions or topics, including newly diagnosed and family issues. Go to the Society's Web site, nationalmssociety.org/hom_chat_homepage , for instructions and links to MSWorld.

Post and reply
Message boards supply a more laid-back opportunity to be in touch with others living with MS. Topics and questions can be posted to the message board “kiosk” at any time. Other visitors respond to them.

MSWorld features a number of message boards. Like their live chat rooms, the message boards can be accessed through the Society's Web site. Caregivers, singles, children, and parents will all find a board that focuses on their perspectives.

But if you can't find what you're looking for on MSWorld, you can surf for other MS-related sites through your favorite search engine. Make sure you find out who is running the board. Is it an individual? A reputable organization? A pharmaceutical company? It's not always clear, but it is essential information.

You've got mail
E-mail subscriber lists, also known as “listservs”, provide yet another way to contact others. A listserv delivers messages to your e-mail inbox. To join in the discussion, all you have to do is hit “reply”. Listservs offer more privacy than a message board, since only people who are on the list are able to read the messages. MSWorld has two subscriber lists: E-Pals and CARE-Pals, for people with multiple sclerosis and their caregivers. Go to msworld.riddlesoft.com/email-groups.php to learn more.

You're not alone
Wherever you are, whatever your situation, chances are there are others in the same boat. Or at least a similar boat.

Self-help groups in all their variety offer a place—physical or virtual—where you can be heard. Groups can also be a source of advice from others experienced with MS—but bear in mind that not all advice is accurate or appropriate for your particular situation.

Any medical information you pick up from a chat session, bulletin board, e-mail list, or neighborhood hangout should be discussed with your professional health-care provider and/or the National MS Society.

And remember, too, that self-help and peer support are not the same as counseling or support groups led by qualified professionals familiar with group therapy principles.

 
     
     
 

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Managing editor Gary Sullivan helped Jennifer Sheeley with this article. Sheeley was an intern at the Society coming from State University of New York , New Paltz, majoring in Public Relations.

 
     
 
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This article originally appeared in the April-June 2004 issue of InsideMS.
Last updated December 2006.
 
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