And if so, do you find it useful?
Well, I’ve been active in mine for some years. I have to tell you, there is a real diversity in these groups and often times the people who come to them really vary. In my group, many of the people who come are newly diagnosed and are simply shell shocked. The man who organized my group had generally tried to bring in speakers and arrange information sessions. At one point we had Hope Warshaw visit us. Now, I don’t know if you know her, but she is a primary voice of the ADA. Let me just say I had a few differences with what she said and let her know it.
Now on the other side of it, I’ve lately been gaining control of the group and have moved it more to an open agenda where people can talk about whatever they want. Many people just want to come talk to other diabetics about their feelings, their troubles and the aspects of thier lives which non-diabetics just don’t understand.
Yeah, yeah, I know… I just wanted to see what other people’s experiences were… Though varied, they may be.
That’s good, bsc… How often does yours meet?
It had traditionally met every two months, but we are trying to move it up to every month. It is sponsored by our local diabetes center at the hospital.
Ours is sponsored by Medicap pharmacy – the pharmacy I joke around with my husband is a front for a money laundering operation because they hardly have anything on their shelves. lol
I went to my first diabetes support group… well diabetes related… I doubt I’ll ever go again… There were a few friendly people but I just didn’t feel welcome by the majority… Plus I joined their email list and spoke up on my opinions on something, saying that I didnt agree with someones research entirely and basically got my head chopped off in emails…when I tried to put both sides to it in my original statement… I hope yours goes better than mine did…
Yeah…! hehe That’s how I feel, too, Duck. You guys are awesome.
I tried to for the 1sst year after I was diagnosed, but at the time I was in the military, and there simply were not any soldiers with diabetes, period. Sure, some family members had it, and there were groups in the civilian community and I even went to a couple of meetings. I found that they could not understand or even speculate on my concerns, nor could I as a single guy far from home facing a terrible disease all alone understand why they felt they needed more support. I was facing this disease, the end of my career, loss of my home upon military discharge and trying to figure out what the job prospects would be for an ex-Ranger with diabetes. Once I was discharged and trying to get on with my life, I was too busy adapting to my new world to be able to devote the time and energy into a group. After making it through all that, I thought about it a few times, but I made it past the time when I would have benefited and haven’t seriously considered it since then.
We have two here, one for parents of kids with “D” and the other is run by the hospital. I’ve been to the adult group, but it is mostly reps talking about their meters, etc. It’s not a support group either. I think the woman that runs it is a type I and she is a psycho woman on things, testing every hour, eating only yogurt and cheese. Most of the people are at least 10 years older than I am, and can’t relate to the family situation any longer. So I have stayed away.
I would love to start one here for just people who have diabetes and need an ear to listen. What do you think the possibilities of this going over would be.
I’ve spent most of my life running groups of many kinds, mostly mental health and substance abuse, but also women’s support groups and eating disorder groups. I’ve also had part of my job be outreach to try and involve people in groups. My experience is that people are often VERY hesitant to attend groups. Even if it is not per se a therapy group they equate it with therapy and there is a lot of stigma to that. People are uncomfortable about sharing intimate details of their lives with strangers or feel that they shouldn’t need to do this, that it is only for people who don’t have friends and family. (When actually group support fulfills a very different role than family, especially if it’s a group of people who are going through something similar to you).
On the other hand, my experience has been that once people attend a group a couple times they end up really liking it and considering it a special time and place where they can be themselves with people who understand. I’ve been very surprised that there aren’t more actual support groups for diabetics (not just the educational kind mentioned), and that not many people seem interested in attending one (I’ve advertised one in my area with little response). But given my experience with groups it sort of makes sense. Also people’s lives have gotten so ridiculously busy these days that a group might seem like an indulgence. (I’ve really noticed this after living outside the country for two years, and retiring younger than many people).
That’s just my .02 on groups. Yeah, it can’t hurt to try it, or to start one of your own if there isn’t what you’re looking for. If anything I think people might be more interested in a peer led group than a therapist led group!
I just found out there is one here and it is free - I guess they have a different theme every month. This month is exercise I think, I am going to go and see what it is like. Can’t hurt. I liked the people that were in my diabetes class and the support group is run by the same lady = plus she is a diabetic nurse so I might get free advice if I go. This Saturday there is a free diabetes expo in my city and they have bus taking everyone downtown there so my cousin and I are going - pretty nice deal considering I haven’t even been to the support group yet.
I’ve been to a couple sponsored by two different local hospitals. Didn’t really get alot out of them. I’ve been D for 36 years and these were geared towards T2’s and the newly diagnosed. Most everyone was at least 10-20 years older than me. In both I asked it they offered anything geared more for T1’s or even more advanced classes or as someone suggested, more support rather than education. (I know what a serving size is!) and they said no. The only T1 support group is for parents & children and it’s at a hospital 45 minutes away, she seemed really sorry but why the heck they don’t offer something is beyond me, just 3 or 4 times a year would be good! So I’ve created my own. Through this site, I put out a call for T1’s in my area who were interested in meeting face to face. The first result was about 4 of us meeting at a Starbucks, we’re trying again this month and I think we could have at least 6. It was great, there was a vial/syringe person, a pen person and a pump person and it was interesting sharing the different stories and I was really comfortable asking questions. There’s another meeting at the hospital this month that I may go to because one of my ex Doctors will be speaking. I thought I might see if they can make an anouncement and find out if there are any T1’s there and invite them to our meeting!
I wish I new of these support groups when I was diagnosed. I had a lot of anxiety dealing with this disease. Great job Barb!!! You are making a difference!! Although I think classes are important, from my experience needed to find a group that was down to earth & non-hospital oriented. It is very important for me to feel normal. I also need to be around diabetics who WANT to take care of themselves. These are the best D groups to be in.
I went to a diabetes support group, once. It was a whine fest & I never went back. Hope yours is a more positive experience.
Yeah, mine is more hospital based… and though I tried to go last night, and it got postponed – and they didnt tell me – I bumped into a lady who also wasn’t told, and she volunteered that she had not yet been brave enough to look up the sugar in a margarita… I think she’s been a few months diagnosed. I was already tossing a lot of food on the day I got diagnosed lol We all react so differently. I certainly want to be around people who want to take care of themselves.
I go to a support group when I have time. Its hard during school because I work full time and go to school full time, but in the summer or on holiday breaks I go. Honestly, I’m the only type 1 there… ever… In all 13 years Ive been going. Its a general group but in the small area I live in there are maybe 10 type 1s, maybe.
these groups are not always geared towards newbs.
I like to stay on top of all info diabetes related so I do find myself not learning anything new all that often, but Im still glad that I go because I am able to clarify information that the CDE presents (I know…) and often times they will want to know how this information affects them but also how this would affect a person with T1- I find myself answering those questions for the group.
the last one I went to covered insulin pumps and CGMs. A lot of the T2s are now on insulin only as the pills are not working for them, so of course they wanted to know what it is like to be attached to a pump rather than taking shots. I answered the questions but I also stood up and showed them what my pump looks like and where it was inserted in my abdomen and explained how it has improved my quality of life and addressed their concerns about painful insertions, etc.
I really like being there to answer those questions that the CDE can’t answer, its a good feeling to be able to educate someone from a first hand experience.
I did find a group that I attended twice that is about 2-3 hours away and I loved it because it was more supportive and less educational and there was almost an even mix of T1 and T2 of all ages from late teen to uh, elderly. This group was more educational games/conversations/ getting to know people.
so if you aren’t thrilled with the one you’ve been going to, do a quick internet search for others in your area and you might find one you love
I really want to met you some day in the real world…I will be your support group!!!
Sarah! Where was the group you met with 2-3 hours away? You’re in the Detroit area, right? We’re planning another get together at I-75 in Troy if you’re interested? Let us know.
I do have a support group, mine is for type 1 women only, and its awesome. We decide as a group what we want to do, if we want someone to come in for a talk, present some new research or tools for us, or if we just want to sit and chat. My group is moderated by a type 1 woman who is also a diabetes educator. Most of my group is under 50, with many members still in college or just out of college.
This is my 2nd support group in 13 years, and I need these ladies. Only they understand what I life with on a daily basis. When I head out to my monthly meeting, I joke I’m going to hang out with my own kind. Its reassuring to know something which I’m dealing with isn’t unusual, or to hear someone else’s experience with it. Having 3 children from 3 diabetic pregnancies, I’m a rarity, and I get to answer questions about my experienced. All in all, its a group I do not wish to leave and I wish we could meet more often.
Give it a try. Go to at least 3 meetings before you make a decision to stop going. Find another group. Call your local ADA for other groups. Or call a local hospital, I know all the major hospitals near me here in STL have at least 1 group, if not 2.