It’s day one of the 5th annual Diabetes Blog week (organized by the amazing Karen Graffeo at Bittersweet Diabetes), and today’s topic is “Change the World.” The assignment?
“Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you ‘formally’ advocate for any cause, share the issues that are important to you.”
Um, yes, yes, and yes! I have been sitting at my desk for about 10 minutes now staring at that prompt, wondering where to possibly begin — I find that once I start dipping my toes into anything related to the world of diabetes advocacy, it’s hard (for me at least) to resist being pulled underwater. There’s so much that concerns me, from poorly executed news coverage of diabetes, to CMS’s shortsighted competitive bidding process for diabetes supplies, to the issue of inaccurate blood glucose meters and strips, to Medicare and Medicaid’s refusal to acknowledge continuous glucose monitors as worthwhile (and I’d argue essential) tools in diabetes management. Sometimes working on this type of stuff exhilarates me — for example, the recent decision by Arizona’s legislature to reinstate insulin pump coverage for adult Medicaid recipients was thrilling. But other times it just feels overwhelming, especially when it’s coupled with the constant task of managing my own blood sugar. I feel like diabetes already is a full-time job, and it’s hard to add advocacy on top of my other full-time job (writing) and not feel a bit like I’m drowning. There’s so much to do, and always more to be done.
With that said, I’ve noticed something personally positive that’s begun to come out of getting more involved in advocacy: a sense of community. I’ve spent the past decade or so as a freelance journalist, and while the autonomy is invaluable, it can also be quite isolating. And when it comes to diabetes, no one in my daily life — save my wonderful husband — really knows much about what it takes to manage your own blood glucose day in and day out. I’ve noticed that whenever I see pump tubing come out of someone’s pocket, or hear the familiar beep of another person’s CGM, I get a little teary — which I take to mean that diabetes often makes me feel much more alone and overwhelmed than I realize. So it’s been wonderful to begin to connect with other people with diabetes through these advocacy efforts — people who understand exactly what it’s like to act as your own pancreas, and who are passionate about the same diabetes-related issues as I am. Not only do I feel hopeful that our collective efforts are making a difference, but I also feel like I’m a part of a community — an inclusive and informal group of people all struggling through the same medical stuff, and fighting for the same type of change.
But let’s get back to the actual prompt: what is it that I feel most passionately about? I think that for me, it’s two things. First, helping other people — whether it’s insurers, reporters, CMS, politicians or the general public — understand what it’s actually like to live with Type 1 diabetes, in hopes that it will lead to better coverage for diabetes-related drugs and devices. I want there to be an artificial pancreas — a real closed loop system that alleviates some of the emotional burden of the disease and reduces complications — and I want to do all I can to ensure that all people with diabetes have access to it. I want to encourage people to participate in clinical trials in hopes that somehow, someway, some day, we actually have a cure. Diabetes sucks, and I want to do what I can to make it better.
And second, I want to write about diabetes in a way that puts other people’s subconscious experiences with diabetes into words. Diabetes is isolating. My goal is for people to read my blog, or article, or whatever, and nod their heads because they feel that way, or have experienced that thing, too. I want to use my writing to find the humor and absurdity in life with this crappy, crappy disease, maybe even make people laugh about it a bit (even though it can also sometimes make you want to cry). And I want to use my writing to try to help other people with diabetes — not to mention myself — feel a little less alone.