Today I spent some time providing the T1 patient’s perspective at my hospital. I’ve been part of the hospital’s diabetes management program for a while, and today was one of the semi-annual advisory meetings. I feel honored to be part of this group. I have learned so much about how hospitals work by seeing it from the inside, and together over the years we—CDEs, dietitians, physicians, administrators, community members, and patients—we have come up with some great solutions for reaching people with diabetes and helping us improve our outcomes. Recently it’s also been an opportunity to bring advocacy lessons from the online community to the hospital setting.
The program has been struggling with its support group recently, and we spent a lot of time discussing it today. I like “real world” support groups (although I haven’t been to one in a long time). The online ones run by patients for patients—like the DSMA tweet chat—are so valuable, but they miss some important things that are difficult to get outside a physical, healthcare professional-led context. It’s just plain hard to get doctors and pharma reps involved directly with patients via social media. So we don’t get a lot of information about new research, hands-on experience with devices, or drug info. (There are some excellent examples of people blogging about devices and products, but it’s not quite the same as seeing/trying it for yourself.)
The hospital’s support group is currently on hiatus while they try to reboot it. Evidently there were some folks with “difficult” personalities (mostly T1s) who derailed the group and made it hard for the newly diagnosed and the T2s to feel like they were getting the most out the sessions. The proposal to make the group exclusively for people with type-2 elicited strong (but respectfully stated) reactions, and we had a good conversation. There are differences between the needs of the T1 and T2 people, of course, but in my mind the similarities are enough to make a blended group worthwhile. We all count carbs, use glucose meters, need to exercise, see the same specialists, and try to learn how to cope with a chronic illness. Plus, there just aren’t many options for people with T1 to get together on a regular basis.
The main arguments in favor of being T2-only focused on the need to reinforce the basics of self-management among the recently diagnosed, with the assumption that most T1 adults have had diabetes for quite a while, which was a notion that I did my best to counter, using myself as an example. Plus, feedback from many T1s in the past was that they just didn’t feel like they fit in with the T2 crowd. Differences in ages between the two groups and issues like making the best use insulin and the emotional drain of living with diabetes for such a long time, these things left many of the T1s who visited the group a couple of times eager to seek out other T1s.
In the end, Daphne, a former patient who had gestational diabetes with all of her pregnancies, proposed a solution that resonated with the hospital crowd. Why not focus the support group on people who have been diagnosed with any kind of diabetes recently, with the expectation that they will eventually “graduate?” This is similar to other support groups at the hospital—the bariatric clinic’s group seemed to be the poster child—and Daphne’s suggestion broke the logjam. I’m still not certain about this. Diabetes isn’t something you outgrow or learn to master. Unlike weight-loss or grief, you don’t progress to a stage where it’s “easy enough” that you’re ready to move on with normal life. But I think the idea to base it on how green a person is with diabetes certainly gets the program moving again, which is important.
My hope is that with some new people and a different vibe, the program will be a place where people who are newer to diabetes can learn and find support and then, over time, the program can change subtly to accommodate people like me who also want to be around other people with diabetes and learn what’s new. Because I’ll tell you, thirteen years after my diagnosis, being part of a community that shares in successes and frustrations and talks about what works and what’s new seems as important as when I was newly diagnosed.
And since I’ve already been asked to attend some of the early sessions in the new year, I’m hopeful we can make this happen.