Diabetes Self-Management Blog

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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Comments
  1. David:

    Excellent column along with many descriptive positive reasons and why support groups are good, needed and well worth attending.

    Fo me, I finally got into gear and went to a diabetes type 2 group well attenbded.

    Unfortunately they had a speaker there who was wearing the wctu running shoes and peddling the worst of the ADA - its all your fault and then swing into a sales pitch for all the latest phyto nutients and why umpteen universities signed off on.

    After 26 years on meds that did not work, and finally getting my liver stopped, and then getting on a proper energy balanced diet, carbs control of 1200 calories and 2 miles walking and now health stabalized and feeling way better.

    Worse yet, the speaker was type 1 and when she asked for hands, we were all type 2.

    To me who had walked almost to end of road and managing to arrest at last moment thru incredible Doctor health meds, carbs and diet fixes and strenuous exercise ; I end up at a support mmeeting where some well intentioned person is 3 layers down suggesting revising the fish hooks while the boat is sinking and there are some huge anchors on the deck.

    The people there attending were a cross section of society - all ages fighting this nasty t2 disease and obviously trying to make a difference.

    So, I will try again and see if it makes sense for me to attend and if I could learn from others experiences as well as share my share my own experiences.

    Posted by jim snell |
  2. Jim, that’s a really negative support group experience. I hope you bring up your criticisms with whoever is organizing this. To me, the best support groups focus on learning from and supporting each other. Expert speakers can add to it, but they should be discussed with the members before booking them.

    Hope the next group is better — you have a lot to contribute to a group. Remember that everyone in a group has a story and something to teach.

    Posted by David Spero RN |
  3. David:

    Most kind comments and thank you very much.

    Support groups and people to share and talk to are most critical and helpful. My experiences as a newcomer were unfortunate but patience and understanding is key.

    Best wishes and keep up excellent helpful blogs and comments.

    Posted by jim snell |
  4. I recieved this sight as a warning from PCH that if I didn’t respond I would loose my entry right. I am not a diabetic although my father was. I’m very aware of treatment as my cousin & a friend of mine has children that have juvinile diabetes. I know what type of a strict diet a person with diabetes should maintain as well as things to do for a quick fix if someone is running low, ect. Maintaining a strict diet with exercise is especially important. Hopefully they will find a cure for it one day. My cousin is 63 yrs old & was born with a mental disability. She is like a 6yr old child. Then to top it off she was diagnosed with juvinile diabetes. She is in great health for any person her age as she has always had a proper diet as her docter has prescribed. There seems that they are getting close to a cure. I live in assisted living and am amazed that they are not required by law to make available a diabetic menu. They get 1/2 of a portion of dessert instead of a special dessert made just for those that suffer from the desease. I’m amazed that as common as diabetes is, they are not required to offer a special menu in the state of Missiori. Shame on the lawmakers that don’t do something to change the laws regarding this. It has really irritated me that a diabetic would be treated like that. If you have special needs then those needs should be catered to, not penalized. I guess it was a good thing that you contacted me because this is something that I have wanted to get off my chest since I moved in here 5 yrs ago. I know this is a business but where does profit override a persons health. There needs to be better State guidelines reagarding this subject. You never know, you might be a diabetic & be in establishment such as this one day & it could affect you. I’m not diabetic but you see this happens to be something I believe is wrong.

    Posted by Rita Rogers |
  5. One way is websites like Diabetesdaily and Tudiabetes. You can cherry pick the posts that are appropriate for your case and ignore the rest. Lacks the personal touch but then you don’t have to travel. Information is very valuable.

    Posted by calgarydiabetic |
  6. Calgarydiabetic dead on. This site and tudiabetes do a great job. I follow them both and write out to them.

    Posted by jim snell |
  7. Why don’t I participate in a support group? Let’s look at my life:
    I work full time. I am guardian for my father, who lives in assisted living and has dementia, so I take him to all his doctor appointments, and make sure he has clothing and other necessities. I am active in my church, and with my husband lead a once-a-week Bible study & discussion group. I sing in a choir. I take my grandchildren to piano and swimming and art lessons. On the days that my daughter works late (3 days a week) I cook for her family, for a total of 7 people. I am active in a professional group. I maintain several close friendships. And I volunteer for a local blindness rehabilitation agency.
    I have lots and lots of people in my life. Yes, I would LOVE to have more friends who understand my diabetes. But it’s even higher priority to do all the things I have listed.

    Posted by Beth |
  8. David,

    I’m really happy the support group experience has been beneficial for you. I enjoy your blogs and get a lot of usable information from them.

    My experience with support groups was a little less useful for me. First of all, like so many other group activities, there always seem to be one or two type A personalities who feel they have to dominate the conversation. They have an opinion on everything and feel compelled to correct anyone who has a different idea or experience. Combined with those are the “sicker than thou” folks, who need to one-up whomever is talking about how they feel or what challenges they’re facing by reminding everyone how their condition is much worse.

    I’ve also found that most facilitators aren’t very well trained or skilled at controlling this type of group dynamic. They may have good technical knowledge, but they’re either overwhelmed by the more forceful participants, or worse yet, are one of them.

    I see the shyer members shrink away and decline to contribute unless strongly encouraged, and it takes a skillful facilitator to accomplish that as well, and we’ve already established that those are hard to find. The usual result is the ones who probably need to share the most never get a chance to.

    Fortunately for me, I have no problem expressing myself, but I feel bad for the ones who do, and get frustrated with the folks who never learned to take turns (or compose a sentence that doesn’t contain the words I, me, my, or mine.)

    Also, a nod to Jim. I too have encountered a number of guest speakers with hidden agendas, mostly involving getting their hands in my wallet.

    Posted by Joe |
  9. I don’t go because the same few people do all the talking. Need a person to control the group.

    Posted by Ferne |
  10. David - thanks for this opportunity. A very important aspect of diabetes is sharing and helps many of us to learn how to cope

    Support Groups? It depends on the individual in how we enjoy our lifestyle as Type 1s. My lifestyle did not change much after diagnoses as I have never allowed diabetes to change my life. Be healthy, follow doctors suggestions, and do the best that I can as I expect my doctors to do for me!

    I have had the best “friend” possible that anyone could want to help me. It is my hubby who gave and has given of himself through advice, discussion the first few years night and day and often still does! Lucky me! Our son and daughter learned how to help me when I had a High or Low blood glucose level and today they are both working in service oriented jobs! I am proud of them.

    Of course I wish I did not have Type 1. There are times when I would just like to go off to shop or take a walk, and not have to carry the supplies needed with me all the time! The pump allows me to do most activities more freely today! I have traveled a great deal in some locations of the world as a T1 and though I could not always speak the language well - we communicated - with a smile, a hand shake and ate and slept well!

    The support groups I have attended are not interesting to me, usually. I am not entirely sure why but mostly, it seems that when they begin to discuss their issues they want to stay on their issue without giving others an opportunity. This is OK for a while but it mostly turned out to be a monologue for one person! Moderator did not help either.

    I did attend a successful meeting with our district’s U.S. Representative last year. The Rep. wanted to hear if we were receiving the support and medical help we needed within the district. All ages attended including a darling 5 year old who had T1. She stole the show! The meeting was very interesting as each of us had an opportunity to express our feelings with a moderator who kept the discussion balanced fairly.

    I now enjoy internet diabetes groups where an issue is posted and everyone chimes in with their ideas, advice and/or suggestions; jokes, family experiences etc. I enjoy it because there are all ages of adults participating I am learning of a whole new language (if one can describe it as a language) of how to Tweak, & Twitter. Some post from different parts of the world. It is fun to ask them how the village is doing; I lived there or visited it at one time.

    Last month I ask one of our local nurses if we could start a Type 1 Support Group? She said yes but has not given one bit of assist since. There are not many T1s around! Sigh. . . . .

    So, again I say it depends on the individual and their local environment and their attitude! Although with T1 and food allergies, my comments and suggestions often may seem strange to others. The oddness in my view of this is that I eat a really healthy, meals three times a day. I enjoy most of the foods they ignore. I am not there to preach so remain less vocal. I do not indulge in snacks or fast foods. Being a senior citizen I guess I do not fit into the twenty through 50 year old Type 1s. :LOL (laughing out loud)

    I have learned how to cook meals from recipes I gathered while living in other countries. It is fun to take the recipes, adjust them by using basic ingredients; cooking from scratch. Canned and packaged foods have ingredients I am allergic to! Thank goodness is my comment.

    What are my feelings now? I am just fine as a Type 1 for five decades plus 4 years this month of November! I now have an insulin pump and doing OK! I have interesting internet friends, and still my hubby who will hold my hand during a T1 crises, awaken me for a 3 A.M. blood glucose test if necessary, and get me through it all.

    I could not ask for anything more! I am also very pleased to learn including yourself, that others have found their best idea of sharing as this special type of activity is important to keep our selves balanced in a healthy mental and physical way!

    Posted by joan |
  11. Joe is right on with his thoughts. There ARE people out there with their own agendas who feel they need to talk longer and louder than anyone else. They usually are the ones who have seen it all and done it all and their problems/symptoms/ situations are so much worse than that of anyone else on the planet.

    When I found I was Type 2 13 years ago, I turned to my friend DL who was diagnosed as a Type 1 when she was 29. She answered all my questions, soothed my ruffled feathers, and helped me through the beginnings of this journey on a 1 on 1 basis. She died a few years ago of a violent a quick cancer, but not before she instilled in me the idea that there are others out there who need to have their hands held by someone who has been a diabetic for a while. I always feel DL touching my shoulder as new Type 2’s start asking me questions. I’m no expert, but I can tell people where to turn for the right answers. One of them is this website.

    Thanks, David.

    Posted by Cathy A. |
  12. Really good points from Joan, Jim, Joe, and Cathy. I led MS groups for six years, and keeping the motormouths and chatterboxes from dominating was a real challenge. Bringing out the shy people is a little easier, but people who think their problems are worse than everyone else’s are tough.

    They also tend to be the people who reject everyone’s suggestions by saying, “Wouldn’t work for me,” or “Tried that.” It helps if the leader sets some ground rules at the beginning — encouraging people to step up if they’re shy and step back if they’re talkative, and to give everyone a chance.

    Also appreciate there are people who get all the support they need in other places, and others who are too busy. I guess everyone doesn’t need a support group, but everyone does need support. Glad some folks are getting help o-line and especially here. Makes me feel good to know.

    Posted by David Spero RN |

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Living With Diabetes
An Introduction (06/25/14)
Wink at Diabetes (07/10/14)
The Foibles of Dealing with Diabetes (06/17/14)
Enjoy Your Life! (06/12/14)

 

 

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