Peer support for living with diabetes: She was my second brain

Part 1 of Jo Treitman's story:

I was diagnosed eight years ago, at the age of 14, with Type 1 diabetes.  I had a pretty easy time settling into life as a Type 1 diabetic in high school, as my parents were very helpful, and I was very responsible.  But in leaving for college, it was a really difficult transition.  My health definitely took a turn for the worse.  I didn't have any serious complications but I was definitely headed in that direction if I kept it up.

One of my main issues was that I wasn't remembering that I was a diabetic. Back in high school, I lived in my parents' house, where my being diabetic was normal. When I was with new friends who didn’t diabetes or know much about it, I'd eat the way they did, and do what they did. This obviously took a toll on my health.

The summer after my sophomore year, I decided to work as a counselor at a summer camp for children with diabetes.  There, diabetes was normal for the first time in my life and it was a really good feeling.  I made some great friends there and my numbers were fantastic since we all were taking insulin at meals, and checking our blood sugars all the time.  It was three weeks of paradise!

Unfortunately, when I went back to school, I just didn't keep it up. A couple years later, in my senior year, I was at a table with friends and I met Natalie, who was also Type 1.  We hit it off immediately, and asked each other about the food we ate, exercise, etc.  We both wanted to gain better control of our diabetes, and we decided to do it together, so we  become “diabesties”.  

We instantly started texting each other to get “back on course”.  Every time we checked our blood sugar, we'd text each other the result.  It didn’t matter what the number was because the more times you check, the more data you have and diabetes is one big, difficult, ever-changing math problem. That reminder, from a Type 1 diabetic, was pure support. My relationship was different with her than it had been with my parents because I couldn't get frustrated with her for calling me out on anything since she was diabetic too!  She was the one I'd call when I needed a second opinion, which happened a lot, as there's a lot to pay attention to and a lot to tinker with.  She was my second brain. It was nice to have two brains coming together on this, because my mind would always be spinning with questions like:  If I bike really hard, will my blood sugar go high or low?  If I have fries with ketchup, do I need to take more insulin?  We'd text each other about those things in addition to our blood sugar levels.

A few days after meeting Natalie, we connected with a classmate of mine, Sam, who was also diabetic.  Sam immediately joined in and the three of us texted constantly.  We'd wake up to text messages, and would eat a lot of meals together. We even began to notice trends in each other, since diabetes is different in different people. Certain foods may work for some and not for others. Even certain exercises may cause one person to have a low blood sugar and another person’s levels to rise. 

When your blood sugars are low, you feel shaky and really out of it.  Sometimes if I was studying late, and Natalie was around, she would bring me a juice box at 2 am.  Those lows are really annoying, so that meant a lot.  Having someone by your side who knows how it can be was pretty awesome.  

The three of us went about texting each other, and realized we wanted every single person living with diabetes we knew to know about this because it was so unbelievable, and we felt so much healthier.  I was with Sam and Natalie, sitting in a room, when we made the Facebook group Diabesties and invited every single person living with diabetes that we knew.

Read a story about support for diabetes in the e-book, Getting Your Best Health Care:  Real-World Stories for Patient Empowerment, and see the Diabesties Facebook group.  Thanks to Jo for the interview. 

I see seven!: Use of social media by seniors with multiple chronic conditions

A story from Debbie Scammon, PhD:

We are trying to reach our most fragile patients, the ones with multiple chronic conditions, who have extra needs for supportive care. I led a focus group a couple of weeks ago with ten patients, all over 60, all with at least one chronic condition. We thought people like that might be especially hard to reach with a patient portal. But every one of them HAD been on our portal, which we've had only since the Fall 2010. Nearly all of them had been looking up their test results there, after an appointment, to check the posted test results, because, they even said, they wanted to put them on Facebook! Why? I think so they could show off to their friends, even small successes, like: "I got my blood pressure under control!" or "I walked an extra mile," or "I lost five pounds!" They'd look forward to getting congratulated by their peers, getting accolades; they want that pat on the back. It might be more meaningful to them when it comes from someone who understands the situation they're in, even more than from a doctor.

Later on in that same focus group, one patient who'd been a patient advocate in a community organization raised the possibility that patients with similar conditions could start a peer support group. It was notable to me that they weren't dependent on healthcare providers for that; they wanted to be there to support each other. The information shared was that vital to them. For example, one member of the focus group had said, "I wish my care team didn't ask me what meds I was on every visit." Another member of the group responded, "That's because you only see one doctor; I see seven!" So the light bulb came on for the one who was objecting to the medication reconciliation; she said, "Now I get it!" They're able to explain to each other in understandable terms why things are happening with their conditions and their care. That's really powerful. That's the whole basis of social networking.

There's a great positive opportunity for using social media, especially electronic media, more generally to engage patients and facilitate their communication with each other.

Debbie Scammon's advice to seniors with several chronic conditions: Learn to take advantage of the "power of many" available from your peers both on- and off-line.

Thanks to Debbie for our interview in June 2011. See the executive summary of one of her recent articles.