The Diabetes Online Community is all about support, but what about in-person diabetes support groups? This month’s Diabetes Social Media Advocacy (DSMA) Blog Carnival asks, “Describe your ideal diabetes “support group”? What would you discuss?” Amy’s really concentrated on getting most of her support from the DOC, but I’ve attended local support groups on-and-off for the past 18 years. So this month, I’m sharing a little about why I love IRL (Internet-speak for “in real life”) diabetes support, plus a bit about a new project I’m working on! 
I love support groups. In any shape or form, hanging out with PWDs is one of my favorite things to do. When I was growing up, most of my diabetes support came from once-a-year diabetes camp and the occasional diabetes event hosted by JDRF or ADA.
In high school, a wonderful group of parents founded a diabetes support group for families dealing with diabetes. The group registered as a non-profit organization, and with a healthy list of sponsors, they were able to bring in well-known guest speakers, like Dr. Bruce Buckingham. Although it was geared for parents, I spent time there coordinating the childcare, and managed to form my own mini support group with the other teens who babysat with me.
Unfortunately, college was a desert as far as diabetes support goes. It was almost impossible to find anyone with diabetes, because it’s is an invisible illness and most college students aren’t interested in talking about a disease when they could be with friends, at the bars, or, you know, studying. Thank goodness for the DOC!
The NYC Type 1 Diabetes Meetup Group
When I moved to the NYC area in 2007, I was lucky to find two new diabetes support groups: the NYC Type 1 Diabetes Meetup Group and the Adults Coping with Type 1 (ACT1) Diabetes group. Because of grown-up life obligations, I’m not able to make every meeting, but I have formed some really amazing friendships and I always know I can count on them for a hug when I need it.
Still, if you’re reading this blog, you might be wondering: why do I need an in-person support group? Isn’t getting advice and support what the DOC is all about? Why can’t I just stay online? It’s so easy!
Good question! Here are a few of my reasons for going IRL:
1. The Dialogue. Message boards, Facebook and Twitter are all excellent ways of exchanging info and support, but they can be sometimes limited in allowing a real dialogue with someone. It can be difficult to ask follow-up questions or share detailed stories when people are constantly popping in and out. Plus, there are certain (*wink wink*) conversations that you don’t necessarily want to broadcast to the entire Internet!
2. Seeing is Believing. Kinda cheesy, I know, but sometimes it’s hard to realize just how many other people go through the same crap as us until you see it in action. One thing I hear often from new people at support groups is how cool it is to see other insulin pumps, to see folks testing their blood sugar, or to hear the alarms or beeps of our medical devices.
3. Demonstrations. I have lost track of the number of times I’ve lifted my shirt to show off my insulin pump set on my tummy, or handed over my pump to someone so they could see how a bolus wizard works. (Brings a whole new meaning to the phrase, “Don’t touch that button!”) Many of us might not know anyone who uses another type of diabetes technology. While online photos of an OmniPod or Dexcom might look intriguing or answer a few basic questions, it’s not until you can viscerally touch and see a device in action that it becomes clear how it could fit into your life.
So those are some reasons I think in-person support groups are awesome. But what do I specifically look for in a support group? Here are my criteria:
1. Close proximity to where I live. One of the major bummers of living so far out from NYC (although I’m considered in the metro area, I’m 35 miles away) is that it takes so long to get anywhere. On the weekends, it’s not a problem, but I work from home. Heading into the city — approximately one hour each way — for a two-hour dinner or meetup is often not the most appealing idea. Having folks nearby also makes spontaneous dinners, coffees and emergencies a little easier to handle.
2. People in my same life situation. It makes sense that people I would most relate to are those who are type 1′s in their late twenties or older who are working, like me. I’m not a parent or a person with type 2 diabetes, so our life experiences wouldn’t overlap very much.
3. Desire to learn and manage diabetes better. I enjoy interacting with folks who want to discuss diabetes technology, tricks of the trade, and the latest research. Complaining and venting are certainly appropriate for support groups, too, but I like the kind of support groups that lift me up and leave me inspired and motivated. I don’t just need a chorus of agreements when I complain about diabetes. I want emotional support, but also practical tips to help solve some of the problems I encounter.
A few weeks ago, I decided “close proximity to where I live” is the one issue I have with the wonderful NYC support groups I’ve been visiting. As much as I love the people, being in the city, they are quite a bit of a distance from where I live and work. I have been itching to meet folks a little more local since moving to Westchester County a year and a half ago. I haven’t found any existing support groups here yet, so I’m doing what I always do when what I want isn’t available: I’m starting my own!
How am I doing that? Well, the concept for the group is still new, and I haven’t even held my first meeting, so I can’t say I’m an expert on the subject. I plan to host one meeting a month, alternating between a weeknight and a weekend night. A few things I’m doing to spread the word include:
- Creating a main page on Meetup.com. Folks can join and receive notifications about when the next meetings will be.
- Posting about it on local JDRF / ADA Facebook walls.
- Emailing local newspapers and blogs about my support group to spread the word.
- Designing a flier to promote the group and sending it to local diabetes clinics, doctors and educators; you can also send it to local pump reps if you know them.
Our very first meeting (a dinner at a local restaurant) is coming up in a couple of weeks, on Tuesday, April 24. If you happen to live in Westchester (NY) County or Fairfield (CT) County, I hope you can make it! I’m also totally open to suggestions for how to promote and organize my new group. This is the first time I’ve ever organized a support group and I’m excited to see where it goes from here — IRL!
* This post is our April 2012 entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all the information you need here. *
Wow… I am so tempted to go to Westchester for this, even if it means crossing the NJ/NY state line and paying the Tappan Zee Bridge toll.
I jointed a diabetes support group, http://www.type1diabeteslounge.org, a few months ago. Our members come from around the Chicagoland area, with many living in the North Shore area of the city. This group has changed my life because I have found men and women with Type 1 diabetes who share their thoughts and experiences on living with this disease. I have learned so much from the speakers that the leader of our group, Merle Gleeson, brings to speak each month. In fact, I now use CGM based on what I have learned in this group and better understanding its advantages. And I know I have friends to talk with at the meetings or at any time who can help me with diabetes, and just be part of my life. The in-person experience makes a huge difference…
I found the Type 1 Diabetes Support Group in Wilmette, IL by default through a marketing research group. It fills the bill of what I’ve wished for during my almost 40 years of type 1. We laugh, share, tease over whose gizmo is beeping and care for one another. We recently had 2 young women, new to type 1, join us. We all wanted to share & encourage them in their journey. Last month one of the members shared his experience of receiving a transplant. All of this for a small cost each meeting and a 1/2 hr drive from the city. And in about a week we’ll have our first conference sponsored by our group.
I also belong to the Type 1 Diabetes Lounge support group mentioned above, and couldn’t be happier. I’ve been a member since the start of this year, and have learned quite a bit about how other PWD manage this disease. I enjoy hearing others’ stories, and learning about new diabetes technology. I thank Merle Gleeson for creating this group, and for all of the work she puts into it.