Hi y'all!
I know I haven't posted in ages - sorry about that. Second semester is even busier than first, which I didn't think was possible!
First things first: I know I left y'all on a bit of an unintentional cliffhanger. I spent a decent chunk of my winter break in and out of hospital getting tests, etc, and the results were better than expected! There are things we need to keep an eye on, and more tests to be done, but for the moment, we've avoided the worst-case scenario we were bracing for. Yay!
Today's post is part information and part rambling reflection, just because that's where my mind is right now. If you're a PWD (or if you've been friends with me for long enough, which as far as I'm concerned makes you a PWD-once-removed), a lot of the info won't be new to you, but stick with me.
So, all y'all know that I've done a lot of advocacy work for JDRF, including my congress trip that I've written about pretty extensively on this blog. I've been involved with this organization since the year after my diagnosis, and while there are some things about them that I don't condone or agree with, I am proud of the work I've done and of the progress the group has made.
When I first joined JDRF, the group name wasn't just an acronym; it was spelled out: Juvenile Diabetes Research Foundation. This was the name from decades ago, when JDRF was first founded, back when T1D was commonly referred to as "juvenile diabetes." A few years ago, JDRF dropped the words behind the acronym - I've never been able to understand why they didn't just find a new name, but the point is, they took a firm step in moving away from the "juvenile" label.
There's a good, obvious reason for this change: the name "juvenile diabetes" simply isn't accurate. Yes, it's true that many of us (myself included) are diagnosed in childhood. And yes, this is one of the many things that separates us from T2D, which is usually diagnosed in adulthood (though this, too, is inaccurate for some patients). But there are plenty of people with T1 who were diagnosed in their twenties, thirties, or sometimes even later in life. This is one example of how the terminology we use to discuss conditions like T1 is constantly changing and becoming more accurate. There are still doctors, researchers, and professors who use this term, and I get it - change is hard. But it's a distinction that's important to me, and to a lot of other PWDs. Nowadays, most scientists consider "juvenile diabetes" an outdated label.
And then, of course, there's the less scientific side. When we refer to T1D as a "childhood" condition, what does that really mean? Because the fact is, being diagnosed with T1D, no matter how good your support system is or what devices you use to manage your condition, is in many ways inherently a childhood-ending event. There's a reason chronically ill kids get so tired of hearing about how "mature" we are. It's not a choice; it's necessary for our survival.
I've told y'all before that when I was diagnosed, my parents and care team had the goal of making my condition as small a part of my life as they could. But in retrospect, that was never really possible; in a sense, I stopped being a kid the moment that diagnosis was written on my chart. In the years that followed, I existed in that strange in-between state that many of my fellow PWDs probably remember: a child carrying a bigger burden than many adults will ever face, constantly aware of the fragility of their own survival and their own responsibility to preserve it.
As a kid with T1D, you learn very quickly that the world isn't fair; for me, that was embodied in the process of accepting that for the first time, my twin, who had always been my equal, could do many things that I no longer could. But more importantly, you learn that there are problems that you have to bear alone, that no amount of support from family or friends can completely fix. My diagnosis gave me a new practical skill set, of course - how to calculate carb ratios and administer injections, how to tolerate pain and find my body's limits - but it also taught me how to hide my hurt, how to be brave when bravery really just means "live with this pain and don't complain about it."
I know it sounds like I'm being dramatic, and maybe I am. But I was thinking the other day about how the last time anyone in my family saw me cry because of my condition was when I was 8 years old, and the last time I actually cried because of my condition was last week. And I'm thinking now about how my endo's promise that my condition wouldn't stop me from doing anything was as much a condemnation as a reassurance, because the second half of the sentence was left unspoken: "T1D won't stop you because you won't let it." So I spent my childhood learning how to not let it, no matter what the cost. And that shaped me into someone very, very different from the child I was before April 21, 2010.
So the truth is, T1 shapes us, ages us, from the moment we become aware of it. Its impact is the sum of countless recesses spent in the nurse's office, birthdays and holidays spent in hospital - but also of the quiet voice in our heads constantly reminding us that we have to do the jobs our own bodies can't do in order to stay alive. That's not exactly a "juvenile" thought, is it?
And regardless of the promises made to me during that first hospital stay, my condition has become a fundamental part of me in every way. My perfectionism, the way I worry about the people around me, the way I hate asking for help and the way in which I approach problems - I don't know how much of each of these traits is inherent and how much is the mark that T1 has left on me, because it's impossible at this point to separate the two causes. Would I be the person I am today if I'd had a normal childhood? Probably not. Would I be where I am today if I hadn't been forced to grow up overnight at 7 years old? I doubt it. So while there are times when I miss the innocence I didn't get to have, at moments like this, it all seems worth it.
