Living with an invisible disability can be interesting, especially when something goes wrong or someone assumes they know more than you do about something you live with. I've been told that I was "disgusting" for giving myself a shot in a fast food restaurant while waiting for my food, have been suggested dangerous "cures" to my incurable condition, and people just tend to wave any of my complications off —they think it "must not be that bad." Every type 1 diabetic has experienced this kind of behavior, so here are 10 things that we all want you to know about type 1 diabetes.
1. We don't need to lose weight, so stop "suggesting" that we do
Well, some of us might, but that won't cure us. Type 1 diabetes is an autoimmune disorder where the immune system attacks and kills off the beta cells of the islets of Langerhans; for the layman, this means that a tiny part of our bodies are dead and losing weight won't do anything to bring them back. When people say "Just lose weight," it often feels like you're discarding everything we do to simply survive.
2. No, there's no cure
We can't pray it away. We can't just change our diet. Unless we go through pancreatic islet transplantation, a procedure that must be done several times over the course of a lifetime and is not always successful, there is nothing we can do to "repair" our bodies. By suggesting that we not give ourselves insulin and instead use a different treatment, you're asking us to meet the same fate as Syble Rossiter.
3. We need shots, just look away if you don't like it
I'll always ask my friends if they're okay with me giving myself a shot in front of them, but you can't exactly expect us to ask everyone around us if it's okay. More than once I've been told that I shouldn't be giving myself shots in public because it's "gross" or "not appropriate," but think about it from my perspective: the car is cramped, the bathroom may be dirty, and I just want to eat some food! By skipping a shot, I'm at extreme risk of hyperglycemia or even diabetic ketoacidosis, a potentially lethal and extremely painful condition that requires hospitalization. Just look away if you don't like it, okay?
4. Yep, that insulin lipohypertrophy looks weird...now stop looking at it
Most of us just call it scar tissue because it looks so similar, but insulin lipohypertrophy are lumps and bumps formed under the skin caused by insulin injections. Sometimes it can be a very distinct bruise-like color, and trust me! I know it's there! Please just let me and my lumpy belly enjoy the water park in peace.
5. We may get a little irritable at times, but I promise it's not intentional!
When you have a high blood sugar (hyperglycemia) or low blood sugar (hypoglycemia), you can get a little twitchy. It has nothing to do with you per se, but when you feel that sick you're not going to be the happiest person in the world.
6. We may not always want to answer your questions
Sometimes it's absolutely okay to ask questions about our diabetes! A lot of us are happy to reeducate and properly inform people about type one diabetes. That being said, not everyone is like that and it can get awkward if that person isn't too confident about having diabetes. Just like how some people can get embarrassed about their anxiety, some diabetics aren't too secure about being a diabetic—or may simply have no interest in educating. If you have questions, Facebook groups are great places to get them answered. To start off, here is a 30 question interview with a diabetic!
7. As well-intentioned as your advice may be, we probably don't want it
It sounds rude, but it's true: unless you're an endocrinologist, a researcher, or another type one, we know our bodies better than you do. Unless you're concerned because we don't look like we're feeling well, please keep the unsolicited advice to yourself.
8. Type 1 and Type 2 Diabetes are completely different things
I'll never discount type 2 diabetes, but there's nothing more infuriating than a stranger insisting that you have a condition you don't. Remember those islets of Langerhans that type ones have lost? Type 2's still have the beta cells, they just can't produce enough insulin to keep up. Instead of an autoimmune disorder, type 2 can be caused by anything from race to polycystic ovarian syndrome, though the most commonly known cause is obesity. Type 2 diabetes is far more common than type 1, and because type 2 diabetes is most often treated with exercise, a healthy diet, and weight loss, people often assume that all diabetics are either type twos or can be treated the same. That being said, all diabetics want your support but very few want unsolicited advice.
9. Some of us might get sick... a lot
All diabetics, both type 1 and 2, tend to have a higher average blood sugar than the non-diabetic. Because of this higher average, most diabetics' immune systems are weakened and we're more likely to get sick. It's not that we don't love you, we're just not coming anywhere near you when you come down with the cold.
10. Money is probably tighter for us than you would expect
$936.82. That's how much my one month supply of insulin cost after insurance. This doesn't include any of my other supplies, like the $8-12 worth of test strips I'm expected to use daily, or the $97 worth of infusion sets I'll go through in a month. Otherwise healthy people have died because they couldn't afford supplies, but the prices keep on rising. So believe me, when we say that we can't go out, it probably has nothing to do with you and everything to do with the cost of our supplies.
