This morning the Diabetes Training Camp Facebook page posted an article titled “Stop diabetes ‘blame’” that really, really hit close to home for me. It was not an easy read–the first article linked to in this one was about a 22-year-old who died from diabetes issues, and the second was a link to a study that showed that t1d women tend to die earlier than t1d men–but it was such a good read. It felt very personal, too. This was something I thought about sharing on Facebook, but I stopped because it talked about so much stuff that’s so personal to me.
I’m not afraid to talk about my diabetes. I mean, obviously–I’ve got this blog, and I’ve got a tattoo on my left wrist that says “diabetic type 1.” There are a number of diabetics who like to keep it quiet, but I have never been able to do that. (Not that there’s anything wrong with that approach, just that I’m incapable of it.) But I still have boundaries there. There’s stuff that I talk about, like I’m not afraid to ask for juice if I’m having a low blood sugar or excusing myself to go take insulin after a meal, but there’s a deeper layer that I don’t really talk about to a lot of people.
This article hit that layer like a sledgehammer.
There’s a lot of scary things about diabetes. I’ve had nights (especially after particularly rough derby practices) where I’ve had to set alarms to get me up every couple of hours to make sure I was okay, even though I have a CGM, because my blood sugars can drop or rise too quickly for the CGM to catch it. I leave a trail of insulin pen needle wrappers and used test strips where ever I go, even though I swear I pick them all up. I have a pretty severe anxiety problem surrounding my blood sugars, because I’m terrified of my blood sugar going low and me not being able to treat it or catch it on time before I pass out (and potentially die). It’s a life-threatening disease, and even thought it seems like insulin fixes it, insulin is only a treatment, not a cure, and it’s not even predictable–it’s a total guessing game as to what my body is doing this week, and the rules to said game change unannounced and at random.
It’s also a lonely disease. I think that’s harder for me than the scary part. I tend to get two responses when people find out I’m diabetic: “You take shots all the time? I could never do that” or “Oh, I totally understand. Sometimes I have asthma when I run.” Neither of those is even a little bit comforting. To the first response, I say “Beats dying.” Yeah, kinda bitchy, but I really don’t appreciate being reminded that what I do is not “normal” and that it’s this whole extra thing I have to deal with*. To the second response: yeah, asthma is an issue, and it can get serious, I will give you that. And I don’t want to play Misery Olympics here. But I don’t understand what it’s like to have asthma, and you don’t understand what it’s like to have diabetes. It’s not a fair comparison to make.
And it’s so lonely because most people don’t get what it’s like to have a life-threatening disease. I’m hyper-aware of my own mortality because my life is completely dependent on this medication. If I don’t have access to that, it’s not going to take long before my body poisons itself (it’s called diabetic ketoacidosis). It’s terrifying to think about how fragile I am in that respect. On the other hand, if I take too much insulin, then I’m still in trouble, because it’s possible to die from hypoglycemic shock. Someone on the internet once pointed out how powerful insulin is because it can both keep you alive or it can kill you (if not used correctly). Not to mention it’s incredibly expensive and very hard to get access to outside of Western countries, but that’s a whole other can of worms.
Diabetes can’t be both a very serious condition that produces a variety of outcomes even when a patient with the condition is “compliant” AND a disease that is totally dependent upon a reckless drug (insulin) where success is completely and totally the responsibility of the person with type 1 diabetes. The message here – If you do not succeed, you did it to yourself. Don’t screw up.
I don’t think there’s that much more I want to say on this, because there are a million more things I have to say on this topic, but go read that article. It explains the issue about a million times better than I ever could.
*Seriously I really fucking hate hearing “Oh I could never take shots/check my blood sugar/do what you do!” Way to remind me that I’m not normal. Please stop saying it.