Who Do You Talk To?

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I love my multiple sclerosis (MS) support group. I look forward to seeing my friends and sharing experiences. Nobody else understands as well what I’m going through. People with diabetes report similar benefits from groups. But most people with diabetes or MS never come to such groups. Do you? Why or why not?

I often wonder why our 25 or so folks are so dedicated to the group. Some drive for hours to get there. (Actually, my four-mile bus trip probably takes almost as long.) Usually Mary, the group leader, a nurse who has MS herself, arranges interesting topics and speakers. Sometimes the topic doesn’t interest me, but I still come. In some way, it makes me feel better.

I’ve become kind of a support-group junkie. Since my first book came out, I have spoken at groups for diabetes, stroke, heart disease, and MS, and I always enjoy and learn from the experience. Sometimes the support people show for each other moves me almost to tears. So does the courage of some people going through hard times.

So I’m interested in the people who don’t like support groups. Is it too embarrassing or too scary? Do people already have all the support they need? Or is it just not convenient with all the other demands of life and diabetes?

If you don’t have a support group, who do you talk to? Talking with someone who really understands what it’s like is incredibly valuable. It’s reassuring. You can gain confidence from others’ success and learn from their difficulties.

We know groups are good for you. A small study published in the Journal of the American Geriatric Society found that diabetes support groups improved psychosocial functioning and diabetes knowledge in older patients. But a study of families of kids with Type 1 found that many people were too busy or too far from a group to participate in one.

Jan Chait wrote on our site that “A support group gives you a chance to find out that you’re not alone. It lets you ask ‘stupid’ questions you may be hesitant to discuss with your diabetes team.”

Speaking of her WWII veteran father, she wrote,

Dad’s never talked about his war experiences. Perhaps being [with other veterans] would have allowed him to open up, share with others, and learn that his experiences weren’t unique; that he wasn’t alone.

Having a chronic illness isn’t the same as being in a war, but there are similarities. Both can be traumatic; both can make us feel powerless. They’re life changing. So it’s good to talk with someone who knows. Thanks to the Internet, if you’re not in a support group, you can still communicate with others online. But for me, it’s not quite as good as in-person contact.

If you don’t have a diabetes support group, do you know other people with diabetes you can talk with? You should. If you have Type 2, you’re surrounded by them. Type 1s and other types also have a lot of company. Perhaps reach out to people through the medical system. An anonymous flyer in your doctor’s office saying, “I have Type _ diabetes. I would like to talk with others in my situation. Please call ___” might do it. Or ask at your church or community organization.

If shyness and embarrassment keeps you from sharing about your illness, get over it. You haven’t done anything wrong, and there are hundreds of people who might appreciate your reaching out.

If you’re interested, here’s a listing of support groups run by medical centers. And here’s a list of groups run by the Diabetes Society.

These days, though, much contact is online. When I wrote about support in 2009, tmana commented,

Diabetes-centric social networks can provide both emotional support and ideas for better care management… Check out networks like TuDiabetes, Diabetic Rockstar, and Diabetic Connect.

Writing of online support, Scott K. Johnson commented,

My interactions mostly involve reading and commenting on blog posts, and twitter, but that has also grown to some very valuable e-mail friendships and real life meet-ups that have been very fulfilling.

So who do you talk to about life with diabetes? Is it mostly in-person or online? How important is that contact to you? Let us know. Maybe you can make some new contacts!

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