(advance apologies to those of you who read this on facebook: forgive me for repeating myself a bit here- keep reading, though, there's much more this time!)
I don't talk about my diabetes much. The day to day maintenance takes up enough brain space. If you ask me about it, however, I will talk your ear off and answer any question as best I can, pull up my shirt and show you my pump and infusion set, offer a fresh lancet and a chance to test your own blood sugar, or whatever you want. But I don't go around spouting off about my disease.
Except here, of course.
Maybe then I have no right to fault others for being misinformed/under-informed/completely ignorant. Upon learning my diagnosis lots of people say things like, "Well you certainly don't look diabetic!" and, "But you're so healthy!" Perhaps I shouldn't get so ENRAGED when someone offers me a cookie and then retracts saying, "Oh, wait, can you eat that?"
Allow me, then, to try to help clear some things up.
Diabetes comes in two forms: Type 1 and Type 2. Type 1 (otherwise known as "juvenile diabetes") is an auto-immune disease wherein the immune system gets confused and slowly attacks and destroys insulin-producing cells in the pancreas. Type 1's are, unfortunately, always rendered insulin-dependent for life.
Type 2 is caused by a very different set of circumstances: most Type 2's can still produce insulin just fine, but have developed insulin resistance which, in a nutshell, means their bodies cannot use the insulin they produce effectively. Most Type 2's can control and even reverse their disease through diet and lifestyle changes, although some eventually need the assistance of insulin and other medications.
The media doesn't help alleviate the general misinformation. About 95% of people who have diabetes have type 2 diabetes, so based on those numbers, it's easy to see why type 2 gets all the attention. This does, however, bring up some issues for us type 1s. Articles like this are very informative, but notice how they only make the "type 2" distinction once? Throughout the article the author references "diabetes" with no distinction. This, I believe, and other similar articles and news reports, really contributes to the mass confusion/ignorance in this country re: these diseases. Trust me, if I could reverse my disease by eating a plant-based diet it would be more than reversed by now (I've been a vegetarian since I was 12). On a more personal level, it leads a lot of people to look at me very very nervously if/when they see me eating cake.
Some doctors, even, seem to be confused. Last summer I saw a clinician I had never seen before for my yearly pap smear/internal exam (sorry boys!) as my regular doctor was away doing research. As I'm laying there, legs in stirrups, she starts chatting with me about how healthy I look for a diabetic and how impressive my last A1c was. Before I could even say, "gee golly thanks" she chimes in with, "You know, it's really great that you keep yourself in such good control. Did you know that some people have it so bad that they actually have to INJECT THEMSELVES with insulin several times a day? SOME people even have to wear a PUMP that is ATTACHED TO THEIR BODY!"
You've got to be kidding.
Have it so bad?
I took a deep breath and very very calmly said, "I'm Type 1. I'm wearing a pump right now."
"Well, everything looks great down here, we'll call you if your pap comes back abnormal for some reason."
Thanks. Thanks so much.
Did she even know the difference? It certainly didn't seem like it. This doctor had been practicing family medicine for over 20 years, so I couldn't blame it on her being fresh out of med school. I was, and am still, completely dumbfounded.
For the record: MY DISEASE IS NOT REVERSIBLE. Please do not suggest that it is, unless you enjoy seeing short blonde people turn red and angry. Until a cure is found (cure meaning fix my pancreas so it starts producing insulin again and fix my immune system so it stops attacking my insulin-producing cells), I'm stuck with my insulin pump and meter. The best I can do is keep my A1c as low as possible to try to stave off any complications.
Yes, of course it is important for me to stay active, watch what I eat, and generally stay healthy, but it is no more important for me than it is for you or anyone without diabetes. What I mean is that it's just fine for me to have cake, but maybe not for every meal. It wouldn't be fine for you either, now would it?
I don't know if other type-1's get as annoyed as I do over all of this, but it's hard to imagine not getting annoyed when people judge you and assume your disease is/was somehow your fault and somehow within your ability to (poof!) magically make it disappear.
Trust me, if I could, I would.
*************************************************************I hereby promise to make a more upbeat future post- I never intended for this blog to be a forum for rampant ranting, I swear! Maybe next time I'll show you a step-by-step infusion set change? Everyone loves a good needle to the belly!