12 Things I've Learned in 12 Years with Type 1

Twelve years ago, I went to the doctor and my life changed forever. Here’s the summary: I started getting thirsty and hungry all the time, and I was peeing constantly and losing weight. My mom finally took me to the pediatrician, who tested my blood sugar and cried as she told me that I had type 1 diabetes, that I needed to go to the emergency room.

I have good memories of the ER. Mostly I remember the nurses telling me I had pretty hair. It was only once I was settled in a hospital room that reality started to set in. That’s when dieticians and diabetic educators started popping by to tell me that oops, everything I’d been eating the first eleven years of my life was wrong, this is how you give yourself a shot, make sure you clean the injection site with alcohol first (bullshit, no type 1 does that), this is how you get enough blood out of your finger to fill up the little cavity at the end of the test strip, don’t forget to clean your finger with alcohol beforehand (HA—no). Oh, you only have four fingers to prick! That’s sad!

I remember one woman explaining to my parents that there’s rarely an explanation for the onset of type 1. The going theory right now is that a virus triggers an autoimmune reaction that, for whatever reason, some kids’ bodies are predisposed to. My mom cried because when I was born, they’d told her the same thing about my hand. There was no explanation for why it didn’t grow. It just didn’t.

It’s been twelve years since that day. I’m twenty-three now, not eleven. I’ve been through four endocrinologists, four insulin pumps, five brands of insulin. I’ve been in therapy for nine years and I spent three months hospitalized in a center for treating eating disorders. My kidneys and thyroid are tested annually, and I get my eyes dilated every December to make sure that my retinas aren’t ripping off the backs of my eyeballs (a condition called diabetic retinopathy). I have a gastroenterologist, an endocrinologist, and a psychiatrist in addition to the regular gynecologist, dentist, ophthalmologist, and GP. Nearly every decision I make, 24 hours a day, 365 days a year, is at least a little bit influenced by my blood sugar.

But I also have a high school diploma and a college degree. I have a cat, a car, friends, and a future. I work and eat and travel and go out and study. Because I’m still alive! And I plan to stay that way for a while!

I’m actually more at peace with my disease than I’ve ever been. I won't say that I’m grateful for it, won’t say that I’m glad this all happened because it’s made me the person I am today, blah blah. But what I will say is that I’m a type 1 diabetic, I likely always will be, and it doesn’t make sense to stay mad about it. The rational thing to do is to make the most of it. Hence…the twelve things I've learned in the twelve years I have lived with type 1 diabetes.

1. You don’t know what you’re capable of until you have no choice. Like most kids, I was deathly afraid of needles. Nurses had to be summoned to pin me down for my shots. Every fall, I’d ask my mom to schedule playdates every day after school so she couldn’t spring a surprise flu shot on me...I thought I was so clever. But the fear disappeared almost instantly the very day I was diagnosed, because it had to. Granted, I still can’t look when someone else is poking me—like when I get a vaccine or my blood drawn—but I stay chatty, my breathing stays calm, and I never pass out. And I’m just fine sliding a needle into my own stomach. If you had to, you could too.

2. My body is not trying to make my life harder. She’s doing the best that she can, just like I am. It’s not her fault that she was wired a little wrong and now lacks the proper tools to metabolize sugar. So, being angry with her is useless. It’s not going to make her work better. I just have to go with the flow and accept that some days she’s going to be handling things a little better than others, just how some days I really don’t mind sitting for five minutes at a red light whereas on other days I scream at people driving the speed limit.  

3. I would not survive for very long during the apocalypse. Which is sad, because I feel like I’d be a solid leader of some kind of survivor colony. But once supplies of insulin ran out, I’d be kaput. My body would literally consume itself, my blood would turn acidic, and death would be slow and torturous. I decided long ago that, if I were ever in that situation, I’d just jump off a cliff. Quicker, less painful, and at least I’d have fun on the way down. Speaking of which…

4. Dark humor is necessary, because…

5. Shit gets messy. I’ve got lots of stories. Bruises on my stomach, blood dripping onto my carpet (crime scene!), infusion sites ripped out, adhesive that takes the top two layers of my skin with it when it’s torn off. A nurse describing to fourteen-year-old me in painful detail how I was going to die of congestive heart failure. A summer camp for type 1 kids where I was weighed daily and another one where the girls received less food than the boys. People have asked me if I used to be fatter. If my continuous glucose monitor was a nicotine patch.

6. There are things that you simply have to ignore for your own sanity. Pump alarms that just keep going and going. Days when you just can’t get your blood sugar down. The patronizing and insulting poster in my endocrinologist’s office that reads: the more you know about blood sugar, the more you’ll want to control it! Oh really, all I have to do to lower my A1C is want it more? Are you saying I don't already want it?

7. It doesn’t do any good whatsoever to ask “why me?” but you’re still allowed to ask it. If you judge yourself every time you start to feel self-pity, you only give the emotion more power. Let yourself feel it without judging it, and it will pass. Trust that your brain won’t allow you to wallow forever. Ten minutes of staring dead-eyed at your steering wheel (while you're parked, obviously) is sometimes all it takes.

8. Most people don’t understand what type 1 is, so if you really need to get out of something, it’s a good excuse. I don’t abuse this. But, I tell you, it works. That being said…

9. I wish this on nobody. My freshman year at UNC, my violin teacher used my glucose meter to test his own blood sugar because he had some of the classic type 1 symptoms: unexplained weight loss, extreme thirst, frequent urination, fatigue. His blood sugar was in the 500s. We packed up our instruments and left, me for the basement of Hill Hall, him for the emergency room. In Hill, I shut myself in one of the practice rooms and cried for him, because, in just one moment, his life changed forever.

10. Life is more fragile than you realize. There was one moment in particular last year when I took almost six times the dose of insulin I needed for a snack. Once I realized what I’d done, I slid to the ground and called my mom, screaming. Hysterical. Because if I didn’t eat or drink almost one hundred and fifty carbs right then, in the next thirty minutes, I was going to die.

Of course, let’s be real. I was in my apartment. I had a large amount of orange juice, which is solid sugar. All I had to do was drink it, and I’d be fine. But the line between life and death became all too visible, because the thing that could kill me—not drinking orange juice—was so simple, so mundane. People “don’t drink orange juice” all the time. You're probably "not drinking orange juice" right now. I called my friend Annie, sobbing, and asked her or her boyfriend to come over and sit with me in case the orange juice didn’t hit my bloodstream before I passed out. She rushed over, I drank the juice, and I was fine. Nothing happened. That curtain between the living and the dead is just much thinner than we like to think.

11. But you can’t live your life obsessed with the idea of not dying. To be happy, you have to find a balance between staying alive and living. Sure, I could have a perfect A1C, I could micromanage my blood sugar and eat only specific things at specific times. I could do everything perfectly, all the time. But what kind of life would that be? What would my perfectly fine-tuned body be good for if I couldn’t use it out in the real world to do real things?

On the flip side, if I went full nihilist and rejected any kind of discipline, ignored all medical advice, I wouldn’t have a body to take out into the world. It’s about balance, about being healthy enough, taking care of yourself enough, so that you can go out and live. For me, it may come at a cost, but there’s no way to know. It could mean I die at eighty instead of ninety (the women in my family tend to live for a really long time). But I could also get run over by an Amazon truck next week, which would have nothing to do with my blood sugar. There’s no way to see the future, so you might as well do everything you can to live your best today.

12. Anything is possible. I truly believe this, because if you’d told me at fourteen that at eighteen, I’d successfully go to college halfway across the country and at twenty-two, I’d travel, alone, halfway around the world for three months, I wouldn’t have believed you. But I did. And type 1s everywhere don’t let their disease stop them. They act and play professional sports and travel and have families and do anything and everything (except serve in the military. We’re major liabilities for those guys). Who knows, maybe even a cure is possible. We’ll see. But until then, I’m okay. I’ve made it twelve years. I’m not stopping anytime soon.