Self-Help, Support and Wrong Assumptions

Once again I’ve been blown away by a patient-centered resource. If you or a loved one is coping with illness, can’t get diagnosed, need resources to help you, are researching alternatives to treatments, or just need someone to listen — this blog post may be just your ticket.

It’s also a good example of that adage about leaping to assumptions! So I write today to correct my own false leap, and to help you, too.

In response to my recent column about support groups, I heard from Ed Madera from St. Clare’s Hospital in New Jersey. He asked me to take a look at a website he and others have compiled about self-help groups. I clicked on the link he sent me, saw the title “mental help” and promptly wrote back to tell Ed thanks, but I don’t try to support mental health advocacy because I just don’t have the knowledge to do so.

HOWEVER! I should have looked more closely before I jumped to that conclusion. (ouch!)

Turns out, as Ed explained, that his website isn’t about just mental health at all… in fact… looking further I discovered listings for thousands — and I do mean THOUSANDS of support groups (which he calls self-help groups) — for any kind of physical OR mental health challenge. They are online or local (in-person) groups, and are located, literally, all over the world! If your eyeballs can read this post, there may be a support group listed near you.

Here are some examples — from A to Z (well, OK, I didn’t find any Zs): from Aarskog Syndrome support and Adoption to Xeroderma Pigmetosum and Youth (students and adolescents.)

I’ve been a fan of support groups ever since I began my advocacy work. I’ve learned that doctors aren’t always the best source of information when it comes to your medical challenges. You can learn so much from other patients or interested parties: suggestions for first or second opinion doctors, alternative remedies and treatments, insurance recommendations, helpful pharmacists, disease or condition management, where to buy supplies or equipment, which hospitals are safer than others, and sometimes, most importantly, just having someone else to “listen” can be invaluable. There’s no limit to the benefits of group networking with other patients.

Ed’s group is called the American Self-Help Clearinghouse and it’s been online since 1993. You can locate a group that can help you, or follow their suggestions for establishing your own group in your own community. Further, you can register an existing group with the site so others can find you.

Access Ed’s master list at Ignore the part about mental health — once you make the links you’ll see that there is no limit to what they offer.

And if you have a support / self-help group you’d like him to list, find his contact information at the site.

One other important point: those of you who follow my work know that I always ask “my” patients to pay it forward — to help others — to share what you have learned. Support groups are a wonderful venue for just that. Don’t just take the help offered — give back, too. Once you’ve been helped, it can be an important part of your healing process to help others.

For my part, I’m going to think about starting a support group for Assumption Leaping Injuries. Anyone want to join?

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Trisha Torrey
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