When I was diagnosed with type 1 diabetes, I hardly knew a thing about the condition – only that I’d always hated giving blood or getting shots. I have a distinct memory before I was diagnosed of sitting on the steps before school, feeling sicker than I’d ever felt in my entire life, and somehow thinking: “Imagine giving yourself shots for the rest of your life…could anything be worse than that?”
A week later, I sat fidgeting at my pediatrician’s office, doing an emergency blood draw that made me pass out cold on the floor. We got the call that evening; within the hour, I was on my way to the hospital with my father, trying to process the magnitude of what we’d just learned.
We found a tiny silver lining in that horrible day, however. On the way to Children’s, he stopped at an electronics store unprompted, ran in and came out a few moments later with a brand new Sony Discman (this was back before the iPod – it was kind of a big deal then) and a few of my favorite albums.
“Hospitals are boring as hell,” he told me. “This way, at least you’ll have some music to listen to.”
Out of that terrifying and traumatic day, I did manage to take away this small kernel of hope and joy, a memory I still look fondly on 16 years later.
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Every one of us living with type 1 diabetes has our own story of diagnosis, our own reactions and responses. Denial, anger, bargaining – we’ve all dealt with the stages of grief. Living with diabetes may never be easy or simple for us (for our children, can always hope for a cure). Surprisingly, though, my story of diabetes has not been overwhelmingly negative – nor has it been that way for some of the people closest to me.
Ways of living with diabetes
After the initial shock and fear, I began to settle into a rhythm, albeit a frustrating one, thanks to the old-fashioned regimen of Humalog and NPH (clear into cloudy, but never cloudy into clear, anyone?) Before diagnosis, I’d eaten at random throughout the day; now, I had to time and measure every meal.
Even the shortest trips required careful planning and packing of supplies; juice boxes and craisins for lows, backup syringes, enough strips to test 5 or 10 times if I got anxious. Like everyone, I made mistakes: Once, on a back-country trip in Brazil, I miscounted the number of pen needles I needed and spent an anxious few days boiling syringes in hot water to re-use them.
None of us is at our most self-aware or disciplined at 16, but I was particularly scattered before I got the news about my pancreas. Living with diabetes became a focusing and clarifying event for me, because I hated how I felt when my sugars were off, and the stakes were too high to screw around. DKA, neuropathy, the simple misery of running high or the fear of hypoglycemic coma made me seize control of my life in a way I previously hadn’t.
Taking ownership of my type 1 changed the way I lived day to day. It gave me a longer lens; I listened to my body more, giving myself shots though I’d always hated needles. I was by no means a model diabetic, but it became the hardest I’d ever worked at something.
When I got to college, I’d learned to listen more closely to my body – what it needed and how to take care of it, whether that was rest, sleep or sometimes just half a dozen sugar packets from the cafeteria in the middle of class. That change, painful as it was, learned by ten thousand fingersticks, worked its way into the rest of my life.
Finding a community
One of the most formative moments of my social life would come about because of diabetes – though I didn’t know it at the time.
At a college party, while trying to balance a beer and a KwikPen, a friend of mine introduced a young woman to me.
“You’re diabetic, right?” he asked. “So is Jen! You two should talk.”
About what, he didn’t specify.
Despite this unpromising introduction, Jen and I hit it off and became friends, even though she spent most of our first conversation trying to get me to switch from daily shots to a pump. Years later, in that funny way fate has, we ended up dating, and shortly after, I got my very first pump. We’re getting married next year – and from Jen, I’ve learned twice as much as I ever knew about type 1 diabetes.
Before spending time with Jen, I barely knew anyone else with type 1 diabetes. I felt alone in my struggle and my frustration. On the other hand, Jen had attended and then worked at a diabetes camp in Rochester, NY since she was 10 years old.
She’d built a vibrant community of in-person and online friends that took pictures of their meters and celebrated every exact 100 mg/dl blood sugar, gave advice about travel and school, and commiserated about kinked pump tubings or unexpected highs and lows. Finding type 1 communities – like Glu – was a revelation for me, and opened my eyes to the different circumstances people live with and ways they cope. I learned about differences in access to insulin around the country and the myriad indignities we deal with in our current healthcare system, galvanizing me to more activism and action toward health justice and equality.
Learning from my diabetes
Is living with type 1 diabetes fun or easy? No – I hope for a cure, for advances in technology, or at least for cheaper insulin just as the rest of us do. Objectively, it’s a stressful, annoying, even dangerous condition that I could do without.
For better or for worse, though, the obstacles it’s thrown in my way served to focus my attention, listen to my body, and taught me some lessons – even if I had to learn them the hard way.
Diabetes is a demon we all fight with, an hourly battle we have to wage on our body’s own frailties and failings. But like any fierce enemy, it may also have something to teach us – about ourselves, our capacity for survival, and the connections we can build with each other for mutual aid and support.
I’m glad to have now joined T1D Exchange and T1D Exchange Glu so that I can learn and help build in this community right here.