My diabuddies and I didn’t know what to think when we were diagnosed with T1D. Most of us had no idea what it was. Some of us heard DIE-abetes and got really scared. I was confused, because I thought the doctor said diarrhea. I had just turned seven by the way.
“When my mommy said I was going to the bathroom a lot, she meant number one,” I said.
“Yes, I know,” replied the doctor, “type one diabetes means you’ll urinate a lot if your blood sugar is high. And then you’ll have to take insulin via the injection like the one we gave you earlier. And you’ll have to check your blood sugar before you eat and before you go to bed. And you’ll have to be careful about eating foods that have lots of sugar. And you’ll have to always carry low treatments with you in case your sugars are too low...”
“And... how long do I have to do this?”
“Oh there’s no cure for diabetes. You’ll have this for the rest of your life. But don’t worry. With proper care, you can still have a normal life.”
Does This Seem Normal To You?
There’s no good way to sugarcoat a diabetic diagnosis… pun intended. So in a way I appreciated that the doctor was relatively straight with me about what to expect, overwhelmed though I was by all that information. At age seven. But I feel like telling people with chronic diseases that we “can still live a “normal life” at any age is sugarcoating the truth. I have a good life despite diabetes, but it isn’t normal.
Normal people don’t count carbs. They avoid them, if anything. And good luck trying to explain how a glass of grape juice has more carbs in it than a bowl of pasta. Good luck trying to explain how someone can be diabetic even though they don’t look diabetic. Good luck trying to hide your needles and test strips and tubes and blood and frustration and everything else.
Sure there’s no such thing as normal, but if asked to describe what comes to mind when you hear the word, chances are it doesn’t involve an insulin pump. And when I think of myself and my defining features, I think of my height, my hair color, my eyes, how I like to dress--never my insulin pump. Normalcy is subjective, and defined by other people. People who always and inevitably notice--
Hey what’s that tube thingy?
It’s moments like those that remind us that we don’t have normal lives. I often forget that I keep my pancreas in my pocket, the way you might forget about a giant bruise on your forehead. And while you’re recovering from that bruise, everyone asks you about how you got it. It can get annoying after a while, especially if there’s an embarrassing story behind it. I don’t like telling people that I found out I had diabetes because I was wetting the bed uncontrollably. Especially not in polite conversation. Especially not every day of my life.
"You’re Diabetic? Oh I Thought You Were Normal. I Mean You Seem So Healthy!"
I think people mean well when they say this, (and they do say it a lot). When I think of things from their perspective, it’s easy to see how they came to this conclusion.
The commercials we see about diabetes, the media buzz about the obesity crisis in America, and the general understanding of what diabetes is all pretty much relates to type two diabetes. The difference is that type two diabetics still produce their own insulin like normal, and type one diabetics do not. Type two diabetes is often related to obesity because it is often caused by poor dieting habits; constantly overeating sugar without exercising.
Basically evolution never expected us to be eating the amount of sugar that we do in modern diets, and it’s exhausting for the pancreas to produce the amount of needed insulin to keep up with the sugar intake. Exercise and certain foods can help regulate blood sugar, but as we get older and exercise less, well, that’s another reason why type two diabetes is also common to develop with age.
Many diabetics exercise well, eat well, and take care of themselves. There are NFL quarterbacks, olympic athletes, and even Supreme Court Justices with T1D who don’t fit the stereotypical image… you could say they just look like normal people, as opposed to the walrus moustache man you’ve seen in the comments section on Paula Dean’s latest recipe that has way too much butter: Diabeetus.
I grew up with diabetes, to the point where dealing with it has become so automatic that sometimes I forget that I have it too. And that’s a blessing and a curse. Having a hidden disability as it’s sometimes called gives me the privilege of hiding it. I don’t check my blood sugar as often as I should, partly because I can feel when my sugar goes low or high, mostly because I’m trying assimilate to that normal life I was promised.
Let’s be honest, the habit of not checking your blood sugar really starts when you’re in a rush to get to work, or when you only have two minutes to get from the cafeteria to the next class. Or maybe when you’re on a date and you don’t want to kick off the conversation with diabetes--especially not your diabetes.
Not a great way to start a job interview either... Don’t worry, diabetes is not going to affect my work performance.
“Oh because you don’t have a severe case?”
I Don’t Have Time To Explain
It’s tempting to shame people for asking me ignorant questions about my diabetes. But I ask ignorant questions about things I don’t understand too. We’re all human, and we don’t know what we don’t know. The conversation has to start somewhere.
While it’s not my responsibility to explain diabetes to the public, it’s not the public’s responsibility to understand diabetes. It’s everyone’s responsibility to be respectful… so please don’t come up with laws to deny affordable healthcare people with preexisting conditions, and for the love of humanity don’t touch someone’s tube thingy without permission. But if you don’t understand why my immune system attacked my pancreas, that’s okay. Science doesn’t understand either.
I think instead of pretending that we can be normal, we should embrace the fact that it’s okay to be different. It’s unrealistic to assume that we can treat people with disabilities the same as everyone else--people with disabilities are not able to function the same as “everyone else.” But it’s perfectly reasonable to assume that we should be inclusive, and make reasonable accommodations for each other. And forgive each other for the blunders we make in trying to understand each other.
I’ll never know what it’s like to have a normal life. But I am grateful to have a good life. One that people with all kinds of abilities and disabilities have taught me to have. Even if there’s a cure within my lifetime, my life will never go back to normal. Because no normal person would ever spend an entire day rolling around in bed for hours just to feel what it’s like to do that without getting tangled up in a tube thingy.