I’ve been a type 1 diabetic for fifteen years, and I’m still always offended to hear someone crack a “diabeetus” joke. Oftentimes, they’re laughing at the latest coffee fad, packed with tons of sugar, or poking fun at another person’s dietary choices. No matter the catalyst, there is absolutely nothing funny about my disease.
It’s one thing to make light of your own medical diagnosis, mostly to provide some comic relief from an otherwise overwhelmingly difficult situation. If I didn’t laugh at times, I’d cry. Having type 1 diabetes is a twenty-four hour a day, seven days a week, three-hundred-and-sixty-five days a year disease. There are no vacations, no respite, no taking a little time off. “Cheat days” always have dire consequences.
My blood sugar can change from stress, miscalculating my carb intake, exercising too much or too little, where I’m at in my cycle, the temperature, how much sleep I got the night before, and many other factors. What some deal with every day, say, their lunch break is postponed by a half-hour, can become a medical nightmare for me. Type 1 diabetes is best managed with consistency and careful control, which isn’t always achievable even with the latest technology and a seasoned diabetic like myself.
My disease is a full-time job. It requires my constant attention, much like parenting a newborn baby or a temperamental toddler. So when I hear someone LOL at the expense of my disease, I cringe. Nothing about what I deal with every day is humorous.
There’s also so much misinformation in these jokes, too. There are several types of diabetes, and no, they aren’t all the same disease. I’m type 1, and my body makes none of its own insulin. Therefore, I have to either inject, inhale, or pump insulin in. There’s no skipping or forgetting insulin without substantial consequences. And no, I didn’t get type 1 diabetes because I ate too much sugar.
If my blood sugar is too high, I feel like I have the flu. I’m groggy, cranky, nauseous, and hot. If my blood sugar is low, I’m shaky, short, and sweaty. Either situation can become dangerous very quickly. A person can pass out from a low, or go into diabetic ketoacidosis (that’s toxic) if high for too long.
Managing my disease isn’t as easy as just eating and taking some insulin. Insulin has to be calculated properly down to one-tenth (yes, you read that right) of a unit, has to be administered at just the right time (for some that’s before eating, for some during, for some after), and the insulin units must be adjusted depending on the person’s current blood sugar. Blood sugar levels can change minute to minute. If you’re thinking, wow, that sounds difficult, you are right.
Again, I didn’t get type 1 from eating too much sugar. No one else in my family has my disease, either. Type 1 is “turned on” in someone. For me, I had a rather odd stomach virus over Thanksgiving break one year. I lost a few pounds, and then I went downhill from there. Over fourteen months, I dropped down to a mere nighty-seven pounds (I’m five feet, eight inches tall!), I was always thirsty and hungry, I was depressed, my limbs were tingling, my entire body was weak, my vision was extremely blurry, and I was even wetting the bed at night. I visited five medical professionals, none of whom tested my blood sugar. I was misdiagnosed with hypochondria and anorexia, sent home time and time again with more rounds of antibiotics.
One day, I took a nap. It was my only day off work and school. My husband tried calling me over and over, but I didn’t pick up. He rushed home from work, shoved me in the car, and took me to the emergency room. I remember one nurse told me, “Honey, you smell sick.” (Later, we realized it’s a fruity smell that’s put off by diabetic ketoacidosis.) They drew vials and vials of blood while I shivered under a huge pile of warm blankets and guzzled water.
When the doctor came in, his eyes wide at my lab results cradled in his arm, he told me I was going to the ICU. I was critically ill from undiagnosed type 1 diabetes. In the days that followed, doctors and nurses told me I was very, very lucky to be alive. Most people can’t live long with a blood sugar seven times the norm.
The past fifteen years have been a roller coaster. Though I’m happy to report I’m a very healthy and compliant type 1 diabetic, much of this is due to the privilege of having good medical insurance and the latest diabetic technology. My disease is always part of me, because I can’t turn it off or take a break from it. I always need insulin and since my body doesn’t produce it, I rely on administering it myself. Controlling type 1 diabetes, I often say, is as easy as controlling a preschooler in a candy shop.
I can’t eat or drink anything without carefully considering how it will impact my disease. If I don’t intentionally dose the right amount of insulin, I will pay for it later, either by going high or low. This usually puts a type 1 diabetic on a blood sugar roller coaster, meaning, we feel horrible for a few hours or even a few days. So while my friends might want to enjoy a margarita night, I know what could happen if I indulge.
I don’t care what type of diabetic someone is — the jokes about diabetes simply aren’t funny when they come from those who don’t live with diabetes. Jokes about amputations, heart attacks, blindness, dialysis, or anything else related to my disease is just downright cruel. Equally as awful are the diabetic horror stories. I can’t tell you how many people have said, “Oh, you have the bad type of diabetes” and then shared the story of their uncle who had his toes amputated and was on dialysis due to his poor glycemic control. Gee, thanks for the encouragement.
The language we choose to use matters. Just like we shouldn’t joke about someone being “a retard” or “retarded,” just like we shouldn’t say something that isn’t fun or cool is “lame,” just like we shouldn’t remark that a circumstance that’s out of the ordinary is “crazy,” we should also refrain from poking fun of diabetes. Ableist language is harmful and perpetuates stereotypes regarding people with different diseases and disabilities. Living life with “the sugar” isn’t as sweet, or as funny, as others try to make it out to be.