Hi y'all!
Hope you're all doing well! It's summer, so true to form, I have been doing approximately 0 relaxing. Work, shadowing, babysitting, studying, more work, etc. Just how I like it! And I do have the update that I alluded to in my last post... we'll get to that in a minute.
Someone I love very much was recently diagnosed with a chronic condition, and we had a long conversation about life after diagnosis and how to handle conversations with friends and classmates. Sometime during the course of our phone call, she proudly mentioned her new medical alert bracelet (with a beautiful pink band, of course). I laughed and told her about how excited I was to get a pink and purple one when I was diagnosed at age 7.
I haven't worn a medical ID in years. My endocrinologist told me to get one for college, and I meant to, I really did. But... somehow I couldn't bring myself to wear it. I remember how proud I was of my bracelet in first grade - not just because it was pretty, but because I saw it as a symbol of my strength, and I was eager to tell people what it meant. I've never been one to hide my condition - y'all know that. That's why my advocacy journey was such a natural one. Speaking to senators about my diagnosis didn't feel much more difficult than speaking to my classmates or teachers.
But over the past year or two, especially since starting college, I've felt that openness become harder and harder. It's interesting, and surprising, and a bit frightening, especially since I don't have a reason that I can articulate.
Logically, I've always known and understood the stigma that comes with my condition. I know that while I wear my scars and medical supplies as badges of courage, plenty of people view them in a much more negative light. That was a lesson I learned at an early age. I still remember how my heart hurt when I returned to my first-grade classroom after a week in hospital and the boy at the desk next to mine loudly asked the teacher if he could move to a seat "away from the sickness." And I still feel the stares and whispers when I go to the pool and the bruises on my stomach and thighs are exposed, along with the glucose monitor that sits on my skin for all to see. These things weigh me down.
And as all of those thoughts swirled around in my mind with increasing frequency and intensity these past several weeks, I found myself faced with news that served to exacerbate them tenfold: after months of an endless battle with insurance, I was finally approved to start using a Tandem X2 insulin pump.
I was thrilled. I am thrilled. I've been on MDIs for 12 years, and while a pump certainly isn't easy or painless, I'm more than ready for a change. But the same day the approval came through, I found myself staring at my Dexcom in the bathroom mirror and deeply, viscerally hating it. Never before have I viewed that miraculous device as ugly, but now, that's the word that flashes in my mind whenever I see it. So how will I handle being attached to another device, one that comes with a cannula and coils of tubing?
I never thought I'd be someone who struggled with being open about my condition. So I was taken by surprise when that disgust - the same disgust I see on the faces of strangers in public - hit so intensely. I found myself scared to tell my partner about my new device, and I still haven't found the courage to tell my friends, because it doesn't feel right asking them to accept and love a part of myself that I can't even manage to accept and love. What happened to the kid who didn't care what the world thought? When did I become someone who does my insulin in a bathroom stall at work?
The truth is, after more than a decade of living in a world that is so quick to judge people like me, confidence just doesn't come naturally anymore. It takes a very real, conscious effort to gather enough courage to show off the parts of me that I've been taught to hide away. And yes, that effort is exhausting - but it's also so important, and I'm working every day on finding the strength to accept the "ugly" sides of my condition.
So when my pump arrives next week, I'll wear it with as much pride as I can muster. I know some days, confidence will be in short supply. But I'll get through it! I'll keep showing the world that my condition, all of it, can be beautiful. And while I show them, maybe I'll show myself, too.
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