Finding Hope in the Diabetes Online Community

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As the wife of a man with type 1 diabetes, there have been a lot of firsts for me in the past three years.

In February 2010, when I first met Sean, watching him calibrate his pump, prick his finger and come up from a low, made me think I’d learned what having type 1 diabetes meant. Then in July 2010, I actually learned what type 1 diabetes meant after Sean and I both got a horrible case of food poisoning in the Cook Islands and I had to prick his finger, help make some quick decisions and get him to the local hospital and advocate for an overnight stay because of his diabetes. He shared a hospital room with some local lizards—yep, that happened.

In the spring of 2011, I wanted to feel what it’s like to be attached to a pump, so I did a saline insulin pump trial. Then, this summer, I was fed up with not knowing what goes on inside Sean’s body and I decided to pursue my master’s in dietetics to eventually become a certified diabetes educator. I made it through the Organic Chemistry (barely) and now I’m engulfed in Biochem and Microbiology, learning all about what the cells of a type 1 diabetic do and how that affects the person living with the disease. For me, learning those things, wearing a pump for a week, and getting my degree is the closest I can come at this point in my life to “truly” understanding what my husband goes through.  Still, I don’t really know…

Recently, I dealt with another “new” for us. Finding a good endocrinologist. Don’t we all struggle with this? Add health insurance regulations into the mix and the whole process can become extremely disheartening. I’m not here to make a political statement—but rather I want to comment on how I learned (quickly) how to navigate the system. The key? It’s all about support. There are these Facebook support groups filled with (mostly) moms and dads with kids who have type 1 diabetes. It’s not like WikiAnswers or Yahoo Forums where you put up a question and have no clue who will answer. This time, you know exactly who will answer. It will be a mom, or a dad, or a PWD who knows exactly what you’re going through. Within the hour after I posted that Sean and I needed to find a great endocrinologist in our area, I had a list of providers who our insurance approves and a few pending appointments scheduled. Situation managed.

With communities of 400, 800, 1500, or even 2000 members, these groups provide the powerful connections people like us need to survive in this world. What’s more than connection is hope. I am ever-so-hopeful for the future of the diabetes online community when I read the posts in those Facebook groups. Parents of children with type 1 diabetes: You are amazing. To those with type 1 diabetes: Your perseverance is incredible.

No matter what our connection to type 1 diabetes is, we in the diabetes online community have to stick together in this world… and it feels less lonely to be in good company, doesn’t it? 

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Comments (2)

  1. I love this post, Mollie. There is so much value in the community, and so many that could benefit from it.  Thank you for helping spread the word!

  2. James Ron
    James Ron at

    Great post! I agree – the importance of an online support community is vast. I wonder how this can be done on an international level. In any case, thanks so much for sharing this. 

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