I was diagnosed with type one diabetes on April 29, 2002. No one knows how I got it; there are theories that I had the flu and instead of my body attacking the virus it attacked my pancreas — but no one knows for sure. I was 18 months old. While kids were learning to walk and talk, my parents and I were learning how to count carbs and stick needles in my body in the least painful ways possible.
My parents spent the next 13 years of my life losing sleep and sanity checking my blood sugar at least 10 times night and day. At the time, I didn’t have a pump so everything had to be done manually with a needle and a meter. Drawing blood from a four year old is no easy task, let alone at two in the morning and then again at three. Through the years, the technology got better. When I was eight, I got my first insulin pump; it was so big it was laughable, best compared to a NOKIA. I hated it. I hated the thought of having to lug around this artificial pancreas that would be attached to my body for the rest of my life. It made my blood run cold. I didn’t even put it on; I looked at the pump and threw it against the wall, shattering it. My parents had to wait two more years until I was willing to try again.
Since my family and I had been managing my diabetes for so long, I never thought much of it. But there were always moments where it was painfully clear that I wasn’t dealing with the same thing as the kids around me. At the beginning of my school career, the nurses at my New York City public school were baffled by me. An ice pack and a bandaid weren’t going to cut it — neither did they. My mom would come to school with me, sit outside and wait for when I needed to check my blood sugar or take insulin. There was no other choice and I’m forever grateful to her for that.
In middle school, I became a lot more independent. One day, I forgot to give myself insulin for something I had eaten and my high blood sugar was giving me a pounding headache. I couldn’t be in a loud classroom, and thought I could find solace in the nurse’s office. I went to her office and asked if I could sit there for a little while until my blood sugar went down and my headache went away. I told her that I had forgotten to give myself insulin, and just needed a minute. She looked at me and started yelling, threatening to call child services on my parents for leaving me alone with this disease because I obviously couldn’t take care of myself. Instead of the quiet I so desperately needed, I cried and hyperventilated thinking my parents would get taken from me all because I forgot to give myself insulin for a snack I had one time.
When I turned 13, I started attending Camp Nejeda, a sleepaway summer camp for kids with type one diabetes. There I had no shame of my disease. The people I met there became some of my closest friends and taught me to be proud of my diabetes. We were all in it together, and we still are. I brought what I learned there into my everyday life. But, I focused so hard on the good that I accidentally dismissed the bad — and some of it is really, really bad.
I have spent the past 19 years sugarcoating this, thinking that I would somehow trick myself into believing this chronic illness isn’t really that tolling. In actuality, all I have done for myself is create a false narrative for a brutal disease that the people around me have started to believe. Diabetes sucks. There hasn’t been a minute in the past however many years where I have been able to do something without thinking about its consequences on my blood sugar. There is no such thing as a stress free meal, a stress free vacation, a stress free anything. My mood, what I’m watching on TV, what I’m taking a bite out of, how much I walk — everything has some kind of effect on my blood sugar and the only way to make sure I’m safe and stable is by being on top of my numbers at all times. We don’t get breaks or time off. It’s constant and forever.
Having diabetes is being in perpetual chronic pain. I feel like a lot of people don’t necessarily realize it. The pieces of machinery attached to our bodies aren’t painless. They are big and bulky and itchy and when the insulin goes in, we can feel it; I can feel it every second of every day and it burns.
Sometimes, when I change the pod on my body that gives me insulin or the dexcom that monitors my blood sugar, I bleed. Occasionally, it hits a blood vessel or someone bangs into me or I bang into something; not only does it hurt from the contact alone, but those little bangs make everything hurt more. Suddenly, I can feel the insulin burn its way into my body as it takes its time exiting the pod and going into me. When the pain gets to be too much or when the pod expires and I have to change it, I rip it off my body and there is blood, so much blood gushing from the hole it left in me. Sometimes I don’t know when it’s going to stop — but eventually it does, and then I put on a new pod and I hope it doesn’t happen again. It always does.
Sitting and writing this makes me angry. It makes me think about how this is going to be my life forever, about how easy some people have it who don’t even realize (I do recognize that I also have it easy compared to many people) — but I can’t live in this bubble I’ve created for myself. In the past year, I feel like I have heard more asinine comments and jokes than usual. It isn’t my job to teach people that this isn’t okay but I don’t help the situation by brushing it off; I’m lying to myself and everyone around me by sugarcoating and pretending like it’s no big deal. Maybe if I show people how hard this disease is and how much of a toll it takes on a person, the jokes and the comments will die down. But maybe they won’t and maybe I’m destined to get weird looks whenever my pod beeps or answer a thousand questions like I’m the spokesperson for diabetics, all while insulin shoots into my bloodstream, burning me from the inside out.
So the next time you drink a soda or eat candy and you think “oh no, I’m totally going to get diabetes from this,” keep the thought to yourself. These stereotypes are harmful and it shouldn’t take a diabetic telling someone that for people to realize. We can drink, eat and do whatever we want. We just need to be vigilant and monitor ourselves. Quite frankly, it sucks. Hearing people joke about it just makes it so much worse.
Happy National Diabetes Month; please don’t think my disease is for you to joke about.