Learning the Language

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.


8 comments on “Learning the Language

  1. Debra says:

    I am new to diabetes, and I have recently come to the DOC, and have learned a lot by reading blogs and tweets. I was very happy to learn that most of the time when I have a high bg # it wasn’t anything I did or did not do, it is because I have DIABETES imagine that. I used to hate the word “correct”. I felt like a bad child that had to be “corrected” by her mommy, now when I have those crazy high numbers, I just do it “correct it”. A term I saw a few days ago, “Fragile & Strong” at the same time. That is exactly how I feel but couldn’t put it into words. I know I’m a strong person to live with this condition, yet at the same time it has weakened me, made me more fragile. Anyway I’m thankful to having found the DOC because of everything I have learned. So all you great bloggers keep on blogging.

  2. Martin Wood says:

    I think we all need the reminder that “diabetes happens.” It’s too easy to blame ourselves when something goes awry. Fantastic post!

  3. smartDpants says:

    You rock– and this post rocks–so. very. very. much. I wish your 12year old self and my 7 year old self could have met back then and known what we know now, what I keep trying to remember that I know now. It’s just plain crazymaking how much the “good” and the “bad” and the blame and the responsibility just weighs on us, and how much (in my experience) the medical community taught me and my parents that language–those values, really, in addition to the language. What total suckage. I still have to have little convos with myself when, like this morning, I wake up at 347 when I went to bed at 186 and a little correction bolus. My brain and body are tired, and I immediately go to “what did I do, and what did I do wrong? obviously I must have done something wrong because this happened and it wasn’t supposed to happen!” It takes a few minutes for me to remember…while I need to take actions to care for myself, I do not have a leash on this dumb disease. And it’s not our fault when it does its own thing. Thanks so much for writing this, J. Well played. xoxo

  4. Sara says:

    It’s so easy to celebrate the “good” numbers and so hard not to feel guilty for the “bad” ones. I think I am still learning that language.

  5. shannon says:

    this post made me say YES! and do a fist pump. yes, really.

  6. Jess says:

    i love this post. absolutely love it. the guilt thing. i don’t know why we all experience it, but it really sucks. thank god for the DOC indeed. love ya!

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