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 Self-Care: Self-Help Groups in the Computer Age 
 
Ed Madara sits on the edge of his battered wooden desk, jammed between his space-age telephone and his IBM personal computer, explaining how he and his colleagues, working from this crowded office overlooking New Jersey's interstate 80, help 10,000 callers a year find—or start—the self-help groups they need.

"It's basically quite simple," he says. "Our database includes listings of thousands of support groups around the state—and hundreds of model groups elsewhere. There's a group for virtually every problem these days. If there's not one nearby, we encourage callers to start their own.

"Let's say Mary Smith calls in from Camden on our 800 number. She's a divorced mother with a young daughter. She's recently married, and her new husband has three sons. They're looking for support groups for new stepparents. Here's what we do."

He cradles the phone on his shoulder and enters the number 46, the center's two-digit computer code for stepparenting. "Next we punch in the caller's location." He enters CA, the code for Camden county, then hits the command key.

The first screen is nearly blank "There's no stepparenting group in her home town," Madara explains. "So we go on to the next level, the Camden area. There's no group there either. So we go on to the statewide level."

The third screen lists four organizations which deal with stepparenting:

  • The Stepfamily Association of America
  • Support Group for Stepparenting
  • Women with Stepchildren
  • His, Hers, and Ours

A special note indicates that a Newark-based facilitator from the Stepfamily Association of America is willing to help interested individuals start new groups in their own communities.

"Level four provides more detailed information on any national groups dealing with the problem," Madara explains. "In this case, there's a write-up on the national office of the Stepfamily Association of America: They publish a quarterly newsletter, hold an annual conference, and operate a ‘step-pal' program for stepchildren. The Organization currently has 53 chapters nationwide.

Bureaucracies tend to be self-perpetuating but self-help groups only exist as long as they actually fill a need.

"Since there's a full-time statewide organizer, we'd probably offer to put Mary in touch with her," Madara says. "The organizer would arrange to meet with Mary and other interested stepparents in the Camden area. In addition, we'd put Mary in touch with a counselor from our office who specializes in helping people start new groups."

I ask if the clearinghouse is able to place most callers with existing local groups. "Oh, yes. In fact, we're often able to refer them to several local groups. I was just talking to a young woman who'd called because she'd read a New York Times article about support groups for young widowed persons. It turned out that not only was she a recent widow, she was also a single mother and a diabetic. So we were able to provide her with names and numbers of half a dozen groups in her home town.

"Calls for groups on specific subjects seem to come in waves—frequently as the result of stories in the media. We've recently been flooded with inquiries for groups for young widowed persons—mostly the result of that piece in the New York Times. We're getting a lot of calls about Epstein-Barr virus right now—most of them saw the recent Newsweek story. A number of new groups have been formed by women who have read Robin Norwood's book, Women Who Love Too Much. And two other groups have roughly doubled in popularity within the last year— groups for manic depression and for the adult children of alcoholics.

"Our most important—and most rewarding—calls are those asking for groups which don't exist," Madara says. "For instance, we've had a number of recent callers who believe they may have the newly-described chronic Epstein-Barr virus syndrome. Only a few cities have groups for this condition as yet, so we ask callers if they'd like to join with others in their home communities to discuss forming a group. If so, we add their names to our database and pass their phone numbers on to others with similar concerns. We also offer continuing telephone consulting to help them get the new group up and running. We've helped callers form more than 400 new groups.

"Unlike bureaucracies, which tend to be self-perpetuating, self-help groups only exist as long as they genuinely fill a need," Madara says. "New groups are forming constantly. Groups that stop filling these needs will just peter out."

I ask if the people who call the Clearinghouse have tried and failed to get professional help. Madara nods sadly.

"A good number have had bad experiences with professionals—they've been told there's nothing wrong with them, or that it's all in their heads. In many cases they simply don't fit into anyone's specialty. Some of our callers are pretty discouraged. We spend a lot of time providing encouragement and support."

Madara gives professionals low marks for understanding self-help. "They don't understand the self-help group process—and the benefits it can produce," he says. "Their training ignores it and they haven't bothered to find out on their own. They can't imagine the amazing things people can achieve on their own. Self-help is largely outside their experience."

What would Madara suggest for those who'd like to find out more about how self-help groups operate? "By all means, go to a group yourself. Choose a group that corresponds to your own special concerns. Or attend a group as a visitor—Alcoholics Anonymous, Al-Anon, and many other groups hold open meetings.

"All of us here at the Clearinghouse attend self-help groups regularly. And every time we do, we come back with a renewed appreciation for how much people really can accomplish when they take things into their own hands."


For more information:

Ed Madara, Director
The Self-Help Clearinghouse
Northwest Covenant Medical Center
25 Pocono Road
Denville, NJ 07834
(201) 625-7101
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 About The Author
Tom Ferguson MDTom Ferguson, M.D. (1943-2006), was a pioneering physician, author, and researcher who virtually led the movement to advocate informed self-care as the starting point for good health. Dr. Ferguson studied and wrote......more
 
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