These technologies can make life easier, can let us touch people we might not otherwise. You may have a child with a birth defect and be able to get in touch with other parents and support groups, get medical information, the latest experimental drugs. These things can profoundly influence life.
~ Steve Jobs (source)
As far as traditional support groups, I think I have only attended one. The lack of traditional in-person support groups is near the top of my list of frustrations in living with Type 1 diabetes as an adult – particularly having been diagnosed as an adult.
The support group I went to had the best of intentions, but I just think it was poorly designed for the population. Or maybe the population was the problem.
There is something to be said for a support group of people who are in similar circumstances and stages in life. I am not saying that I don’t have anything in common with a retiree getting used to his new life with his insulin pump, or with a mom trying to deal with their diabetic son’s teenage rebellion, but I do think that our needs may be different enough that you can’t adequately meet all of them in one group. It also didn’t help that the facilitator kept calling the participants by the wrong names.
The group also quickly found out (not from me, that would be my own fault and nothing to complain about) that I often write about diabetes on my blog (#meta). I’ve heard the assumption a few times that if you write about diabetes, you must be an expert in it – that you must have everything under control. For most all of us, I don’t think that can be further from the truth. Last weekend, I was listening to Kerri’s revisit on Chris’ Just Talking podcast and she made a comment that really stuck with me. She shared that “Not all of us are trying to make big headlines. Some of us are just telling stories.”
I probably don’t know any more about diabetes than anyone else who has read a book or two on the topic and has a medical support team that generally knows what they are doing. Don’t mistake me for someone who has it altogether, I’m just someone who likes to talk a lot and enjoys having friends in the computer who understand what I am saying.
I would also add that just like many people (Hallie, Meri, Allison, Abby, and Sysy) have written about recently, sharing A1c values and judging a person’s diabetes success or failure off that singular value can also be a mistake. My A1c does not tell my whole story or determine whether or not I need the encouragement and accountability of the support group. I didn’t want to be “an example”, I was there for support just like everyone else.
So now that I’ve complained enough, what would I actually like to see in a diabetes support group?
There is a time and a place for everything but for a SUPPORT group, I would want a group of people with type 1 diabetes, roughly in the same age group that I am in, talking about the struggles, frustrations, and stresses of life with diabetes that we all share.
Hanging out around a table (that grew in size and experiences as the night went on) at the last Friends for Life conference, was the closest I have had to that experience.
I heard great analogy once about helping other people. Imagine a cup, a saucer, and a pitcher of water. You are the cup and the people in your life are the saucer. The pitcher of water is your time, talents, passions, energy, etc.
If you put the saucer on top of the pitcher and pour the water, the saucer gets water on it but the cup remains empty. You might be helping others (for a while) but you will burn out very quickly because nothing is “filling you up.” Instead, picture the cup resting on the saucer, as it should. As you continue to pour the water, the cup will fill up and eventually overflow onto the saucer. You are being refreshed and the people around you get to enjoy the overflow of your time and support as well. It sounds horrible, but you can only put other people first for so long.
I’m working on filling up my cup so that I will have something to share with others.
Earlier this year I completed the training to be a PODS leader for Diabetes Sisters. Instead of just complaining about support groups in my area, I want to do something about it. Within the next few weeks, I will be entering a slower season at work and I am planning to move forward to do something for the diabetes community (of all types) in my area.
This post is my April entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/april-dsma-blog-carnival-2/
