The Value of the Diabetes Community

4 reasons why I think it's pretty amazing.

The diabetes community is pretty amazing.

I have been a part of a diabetes community in one form or another since I was diagnosed. My very first summer I went to camp. We attended every diabetes event possible in my hometown of Portland, OR. When I was in high school, I volunteered to do childcare for a diabetes educational support group.

In college, my diabetes community transitioned to more of an online presence. The College Diabetes Network didn’t exist then, and it was hard to find other college kids with diabetes. I started blogging my sophomore year, and the whole world (literally) opened up. Now I have friends with diabetes from all over the globe! I have visited online friends in other countries, like England and Canada, and I met up with friends from Amsterdam and Australia here in the US.

I have always been a proponent of diabetes community, both virtual and in-person, and I’ll share just a few reasons why I think it’s so spectacular.

Reason #1: Support and validation.

Feeling isolated in college was tough on my mental health and my diabetes management. I often felt like diabetes shouldn’t feel as hard as it did, but only because I didn’t have anyone else to talk to about my experience. I felt ashamed that I still struggled after 10 years, and comments and questions from my non-diabetic peers only reinforced that.

Joining that DOC (Diabetes Online Community) via blogging was the first time I could put my thoughts to “paper” and have them validated and reflected back in the experiences of others. I didn’t feel isolated anymore.

Going to in-person events has the same effect: seeing the same devices, hearing familiar beeps, and swapping “how many carbs do you think that is?” estimates really makes you feel whole.

Having a community was has been especially important navigating pregnancy and parenthood. While doctors can tell me how to adjust my basal rate, can they tell me how to avoid hypos when my newborn is sleeping on me or how to not forget to prebolus when I have a demanding toddler? It’s one of the reasons why I’m starting my new coaching support group, Balancing Baby + Blood Sugars.

Part validation, part strategies, all real life.

Reason #2: Help when we need it.

The insulin crisis is devastating but there is no better example of power of the diabetes community than through organizations like Mutual Diabetes Aid, Insulin 4 All, and all the networking and swapping of supplies that I see on my Facebook and Instagram feeds.

Last weekend, I went to a local diabetes meet-up and there was table full of free diabetes supplies that people could just come and take if they needed. I’ve personally benefitted over the years, such as when I needed long-acting insulin because my pump failed late at night and pharmacies were already closed.

This community cares about each other, truly and fully.

Reason #3: Access to new ideas and strategies.

From an early age, I could see how helpful it was for my parents to hear about strategies that worked for other parents. There is minimal lived experience that doctors can share (and a lot of it’s second-hand anyway) about exercise, food, and even relational and emotional challenges, or it’s just not very realistic advice.

It’s why I started my class, T1D & the 3Ps: Preconception, Pregnancy, and Postpartum. As a wannabe mom, there was so little information out there, and a lot of it felt super scary. Hearing first-hand experiences about how to navigate different situations, like pregnancy, is life-saving. Plus, our class has guest speakers who have been there, like Denise Brown, NP, CDCES and Lemma Brown, RD (no relation), who have both gone through pregnancy with T1D and work with other moms.

The diabetes community is also how I learned about educators outside of my own local community, like Gary Scheiner and Steve Ponder. While you do have to be wise about who’s info you listen to (there’s still a lot of snake oil!), there are some amazing gems to be had, like Diabetes Connections and the Juicebox Podcast.

Reason #4: Inspiration and motivation.

In my younger years, I didn’t think I would have my own kids. It wasn’t until I joined the diabetes community and SO. MANY. MOMS. with T1D, watched their journey, their struggles, but also their successes, and the repeated messages of “this is worth it” that I began to contemplate my own journey and what it could look like. Even though it was hard, having the real world examples of other moms, being able to see their kids, hearing about their process, made it feel more possible to me even though my endo told me I could definitely have kids. Somehow, seeing really was believing.

I love that I can continue that tradition myself with T1D & the 3Ps and Balancing Baby + Blood Sugars.

These are real strategies, real solutions, real stories. Real hope.

What value do you find in the diabetes community? Share your answer in the comments.

Later this week: If you’re a paid subscriber, in Thursday’s letter we will talk about the perils of perfectionism in diabetes management. Not a subscriber? You can try it out for a week for free, subscribe for $5/mo, or sign up for a year and get 2 months free! And Founding Members get a free 30-min coaching call as part of their package.