Periodically I decide I want to disengage from social media for a time.
Don’t get me wrong: I love spending time online. And sometimes that’s the problem. It’s becoming something that seems to steal time and attention away from my family and other responsibilities.
But while I would survive just fine without most of the content on social media — albeit I might be a bit bored in waiting rooms and grocery lines — I feel like I can’t ever really pull the trigger and completely disconnect. Because of diabetes.
I’ve come to rely upon my connection to the type 1 diabetes world through various forms of social media. Particularly my local connections to the sometimes exclusive world of diabetes have never been closer than while participating in my local type 1 Facebook group.
This place has been set up as a group for nearby moms of kids with type 1 diabetes, like my son James. Just this week we’ve talked about school, and bullying, and how awesome our kids with type 1 are doing, and discussed the pros and cons of various diabetes supplies, and overall just really helped each other out. Often enough I’m the one who needs the feedback, the support, or the information. Or even stuff. Sometimes I need supplies. I’ve been able to procure materials normally only available directly from the manufacturer by connecting with my fellow type 1 moms.
I also try to regularly respond so that I can be a helper to others. If somebody is newly diagnosed, I might share some real-life suggestions that worked for us. Sometimes all I can do is provide support. By liking a post I tell the author that I understand, or I can express in words that their experience is not unique and they are not alone. Part of me feels like I can never leave that behind, and honestly I don’t ever want to.
So while I sometimes consider taking a short break from the quizzes and daily news articles and the memes and political arguments that social media seems to enable, for me, the benefits are all too great to ever give it up for good.
Since James has been diagnosed for a long time now, I can remember the days when it was harder to connect with other people who shared our situation, and it wasn’t better in that simpler age. One of the most enduring and positive things that our little local group has provided for us is the opportunity to create real-life meet-up events that forge connections in neighborhoods and communities and provide companionship for our children and for ourselves as parents.
With so many positive things to be said about the diabetes online community, I want to offer only one caution. Amidst all the discussion and involvement and support, every so often an issue arises that our group is really not qualified to discuss. We may have our personal experiences and our opinions, often based on solid research. But really, sometimes the issue needs to be addressed by the child’s medical team, who can provide qualified diagnosis and interpretation of medical data. It’s tempting sometimes to try and overlay our own experiences onto those of another child, but as much information as we collectively have, there are cases that are simply “above our pay grade.”
And then we just need to offer our support and the simplest piece of advice that we have: “Call your team.” For certainly another benefit of our increasing connectivity is an increased ability to connect with our medical experts — the pediatric endocrinologists, certified diabetes educators (CDEs), nutritionists, and social workers who comprise our medical teams. While I would be lost without my local friends, I need these guys too! Sometimes more than ever, now that James is a teenager. We need to have the wisdom and the humility to recognize when our best advice is also the simplest. “Contact your doctor” remains good counsel even — or especially — in our digital age.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.