There is a language that comes with diabetes. It’s not all terms like “ketoacidosis,” “carbohydrates” or “glycated hemoglobin,” although those have their places. “Glucoaster” and “rage bolus,” too. The language I’m thinking about — one that I’m still learning — isn’t one that was taught to me or my family when I was diagnosed. It’s one that I don’t think I even caught on to until a few months ago.
When I tell someone that I was 12 years old at the age of my diagnosis, that person’s first response is usually something like, “Oh, that must have been so hard for you.”
I don’t know how to react to that statement. I mean, yes, it was hard — probably more for my parents than it was for me. Mostly, I just remember how weird it was.
It was weird because I had no way to identify the new things that were happening. In my prepubescent brain, there was no word to describe what it felt like to hear my Mom getting hung up on by insurance companies. There wasn’t a term for being force-fed a morning protein exchange in time to catch the bus. I had friends with diabetes, but I didn’t know how to ask them about that terror that rises when you’re on the way to the endocrinologist and you haven’t filled out your log book in 6 weeks.
The language — the reality — of diabetes that I learned early and lived with for so long was full of “shoulds”, “can’ts” and unspeakable “what-ifs.” Diabetes was my thing to live with, and it was up to me understand that thing in the terms that had been presented to me: certain doses of insulin at certain times of day, paired with certain foods and kept track of with stabs and sticks and pens and paper. I either did it right, or I didn’t. And if I didn’t, I certainly wasn’t interested in talking about it.
I feel like I didn’t even start stumbling over the real words until a few years ago. In fact, I remember the first thing I told myself in my new found diabetes language: “If I check my blood sugar, and it’s high, I don’t need to get upset.” I don’t even know where the voice came from, but I instantly recognized it as a completely new way of taking care of myself.
All this time, I’d been shouting myself down. Berating myself for not “doing it right.” Entertaining myself with worst case scenarios. Worst of all, changing the subject anytime my well-being — mental or physical — came up with the people I loved. I’d been speaking to myself, and my disease, in a way that neither of us really understood, and it wasn’t doing anything for either of us.
I’ve said it a million times, and I’ll say it again: Thank God for the Diabetes Online Community. As I began to eavesdrop on other people’s diabetes conversations and read other people’s diabetes thoughts, new phrases started to come to me. Sentiments that were so obvious, but that I’d never pieced together in my head. “Diabetes sucks ass.” “My blood sugar is 319 and I don’t know why, and it’s not my fault.” “There are used test strips everywhere, and that’s kind of funny.” “I’m afraid, but I’m not sure of what.”
I wish I could go back to 1990 and hand my 12-year-old self a glossary. But since I can’t, I feel compelled to bring all the new PWDs that I can into the conversation. I’m glad that so many of us are speaking — loudly and frequently — in a language that makes sense. I can’t wait to keep learning.