I have this memory, though I believe it to be fabricated, of being seven years old and eating a chocolate bar. In my head, I eat the chocolate, savoring every moment of tasting it. Light filters into the mostly beige room through beige curtains, tinting everything golden. I sit on the old green carpet, looking out the sliding glass door. I see a bright backyard, and think about going out to the swingset. And, most importantly, I don’t have an insulin pump making a bump in the sleeve of my t-shirt.
I could probably write endless little stories about life with diabetes, but none of them can fully encapsulate how much I truly hate this disease. I hate that my body runs on two AAA batteries. I hate that I can never just eat a plateful of french fries when I feel like it without performing a million calculations about what my activities for the day will be, how stressed I am, whether something I ate earlier might still be affecting my blood sugar, whether I will want another coffee after this one, whether this plate of fries could land me in the hospital if I get it wrong. And then after as many of these considerations as I can possibly do, sometimes my blood sugar still doesn’t do what it should.
Sometimes I manage to forget this ritual anxiety for a few minutes or hours, but it always comes crashing back. My continuous glucose monitor makes a loud beep to let me know that my blood sugar is high in the middle of a professor’s sentence, and everyone stops while I explain that there’s nothing to worry about and a well-intentioned classmate asks if I need water or anything. One of my friends good-naturedly says I must be so brave to handle injecting myself all the time, and I point out for the eight millionth time that if you needed injections to stay alive, you’d figure out a way to overcome your needle phobia, too. Someone makes a comment about candy giving a kid diabetes, not realizing that I, an actual person in the room, have diabetes, and I spend the next 15 minutes calming down and remembering that people don’t understand, that not everyone knows that type one diabetes is an autoimmune disease that occurs when antibodies attack the beta cells of the pancreas, ceasing production of the hormone insulin, which allows the body to break down glucose. When you have a chronic disease that people think is caused by eating too much sugar, it’s pretty demoralizing to be reminded that people think you did this to yourself.
I, and the millions of other people who live with diabetes, spend every day doing all we can to keep ourselves alive. For me, that means using an insulin pump and a continuous glucose monitor (CGM). The pump looks like a stick-on patch; it has a small cannula inserted subcutaneously, which allows it to administer a programmed background level of insulin all the time, called a basal rate. When I eat, I calculate a dose, called a bolus, which should, in a perfect world, offset the carbohydrates I’m about to eat. The CGM looks similar, but instead of a cannula, it has a small platinum wire that reads the interstitial fluid under my skin and transmits a blood glucose reading to an app on my iPhone every five minutes. It can also predict trends, which helps me be proactive instead of reactive when changes start to happen. Throughout one day, this is what staying healthy takes: I wake up as late as I reasonably can, especially since last night my CGM woke me up twice to treat a low blood sugar, despite having decreased my basal insulin for the nighttime since I knew I’d eaten a lighter dinner than usual. Luckily my roommate knows what sound means she needs to make sure I’m okay; after many years of nighttime lows, I can sometimes sleep through them. When I get up, I take my thyroid medication, because autoimmune diseases tend to come in groups and I have a couple. Then I check my blood sugar the old school way: I put a test strip into my meter, press a button on my lancing device (as a kid I started calling it my “pokey thingy,” so that technical term seems foreign) and apply the blood sample to the test strip. I then put that number into my CGM to calibrate it for the next 12 hours. After calibration, I input my blood sugar and the carbs I will eat for breakfast into my pump, double-check its math and make any adjustments and then press deliver. I put a muffin from the fridge into the microwave for a few seconds while I go to the bathroom and get ready for the day.
Since it’s a Wednesday, I have a class first thing. On this particular day, I also have a meeting with my pre-major advisor and then a flute lesson. Since I know it will be a while before I get a real lunch, I stop at Express to supplement my breakfast. Accordingly, I put an estimate of the carbs into my pump and take a reasonable dose for what I’m eating. Then, I’m off to class.
40 minutes later, my phone makes the specific vibration pattern that means my blood sugar is dropping at a concerning rate. I’ve already finished my breakfast, so I spend the rest of class hoping the carbs will take effect before I drop too low. I dismiss the push notification and try to focus on the class discussion.
By the time class ends, the dropping alert has become a low glucose notification. I only have 10 minutes before my meeting, so I go straight there, having a few glucose tablets on the way. They’re essentially like really big sweet tarts, but more powdery. I should take four, but I only have two left since I forgot to restock this morning. I’m not that low, so this should work out. I do feel a little bit spacey, but the carbs should act quickly.
The meeting passes without me passing out, but when it’s over my blood sugar has dropped significantly. Apparently I took too much insulin for breakfast, or else I’m extra stressed about pre-registration (aren’t we all?). I’ve got a couple of minutes before my flute lesson, so I decide to backtrack to the Bridge for a snack. This works better than the glucose tabs, and before long I’m up in an acceptable range.
After my lesson, I get another fall rate alert, but luckily it’s lunchtime. I go to the Deece and get a typical meal: some form of potatoes, possibly a legume, a serving of honeydew and another coffee. A decent carbohydrate estimate and the number from my CGM allows my pump to come up with a good dose, which I double-check in my head. Sometimes I suspect my pump of trying to kill me with shoddy math, so I like to be certain. Satisfied with its accuracy, I deliver my bolus, wait a few minutes for the incremental delivery, then dig in.
Because insulin takes awhile to kick in, I try to take my bolus before I start eating. This obviously becomes problematic when something looks super delicious but then I decide after two bites that I don’t want to eat it. If that happens, I have to try to find something else to eat with equivalent carbs, which can be a pain. For this reason, I usually stick with foods I know, but today I decided to branch out slightly and try some chickpea stew. All its constituent ingredients seemed tasty, so I thought it’d be safe. After a few bites, I realize that the stew has a lot more kick than I’d imagined, and since I’m weak when it comes to spice, I realize finishing it won’t work out. I go in search of a replacement and settle on a glass of milk and a small portion of french fries.
After I eat, I have another cup of coffee, to which I am irrevocably and unabashedly addicted. It happens to have nominal carbs, so I can drink it more or less without thinking. Then I get ready for my second and last class of the day.
All seems well as we break off into groups to go over some discussion questions, but then I feel the familiar vibration. Low again. Only this time, I have absolutely no food, no glucose tablets, to fall back on. For whatever reason, I decide to try and wait it out, hoping maybe my liver’s natural glucagon will kick in and save me the hassle of figuring out a more elegant solution. After 10 minutes, that hope dissolves. I just keep dropping. So I ask my tablemates if any of them happen to have a snack, and one kind soul produces a tiny apple and some citrus-flavored candies. These should do the trick. I remind myself to get more glucose tablets with a note on the back of my hand, because this isn’t just a careless error from grogginess; it is dangerous.
After that class, I make my way back to my room to do some homework before dinner. I end up knitting while watching Netflix, but at least I get the illusion of productivity. Soon enough, my roommate returns from her last class and we head to the Deece for dinner, and I repeat the same protocol as for lunch, minus the coffee and minus the attempt to eat spicy food. I look at my 24-hour glucose chart from my CGM and find the unexplained continuous lows more amusing in hindsight. I try to focus on the fact that at least I didn’t spend all day trying to get my blood sugar to come down.
Before too long, I’m back in my room and doing homework, and not long after that I’m getting ready for bed. Since I’m still hovering at not-quite-low, I have a couple of chocolate chip cookies and some peanut butter. The combination of complex carbs and protein should keep my blood sugar up overnight, allowing me to get a full night’s rest.
Hopefully, this walkthrough of a day with type one diabetes allows those who don’t know this disease to understand just a little bit about living with it. November is National Diabetes Awareness Month, and too few people know more than stereotypes or misinformation about diabetes. No, I didn’t eat too much sugar as a kid. Yes, I can eat this sugary food on my plate without adverse effects. No, I’m not immune to the pain of needles. Putting on my pump or my CGM sometimes leaves me in tears, but it’s not as if I have a choice. Above all, my disease may be a part of my identity, but I am not someone to pity or someone to hold up as the pinnacle of bravery. I am just a person who happens to live with a chronic disease.