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On Living With An Incurable Illness

No matter how healthy a person looks, don’t make assumptions if you haven’t lived their struggle

One of the most common misconceptions I have faced about being a Type 1 diabetic is that I did something to cause it — specifically, that I must have been overweight or maintained an unhealthy diet. In reality, my disease has nothing to do with either of those factors. I had always been a thin child and actually became startling underweight in the two weeks before I was diagnosed. I lost more than 20 pounds because my body was starving without insulin, the hormone that helps us absorb nutrients from our food. For whatever reason, at the age of 10, my body decided it just didn’t feel like making this hormone for me anymore — kind of like a student deciding to withdraw from a class long after the drop date has passed.

I spent two weeks in the hospital, eventually meeting with nurse educators, who showed my mother and me how to manage my illness by administering shots and taught us how to treat high and low sugars.

I still remember the unabashedly curious and sometimes startled looks people would give my mother and me when we’d run into them around town after I was diagnosed. Parents of friends with whom I played sports or went to school would ask how we were doing while peering at us with variations of the same pitying, slightly bewildered expression. My mother would try to explain what had happened, but these acquaintances were always clearly confused, trying to match the sick-looking but very thin child in front of them with the limited information they’d learned from the media about diabetes — information that positioned the disease as a modern American plague tied to obesity, lurking in the shadows of the local fast food joint and ready to strike.

“She was never even close to overweight, though!” they would say. “Was it in the family? How did that happen? Can you get rid of it?” No one ever seemed bothered by the fact that I was still within earshot when they asked these questions, or that they were treating my diagnosis of a chronic illness as something shameful, something we should have been able to predict and carefully avoid.

My mother, ever the patient and graceful advocate, would take the time to explain what Type 1 Diabetes is really like. She described how it affected a 10-year-old girl just trying to be normal like the rest of the kids in her dance class, and what it was like for a family trying to figure out how to navigate this uncharted territory.

No, Type 1 Diabetes is not preventable, it is not reversible, and there are no pills or holistic potions that will do anything to alleviate it. It has nothing to do with having a complicated relationship with donuts or eating too much Halloween candy, but everything to do with the immune system deciding to fight against the part of the pancreas that makes insulin, mistaking it for an intruder that must be kicked out immediately.

As of today, 12 years later, there’s still no cure for it. Living with an around-the-clock incurable illness is still isolating and exhausting. I’ve gone to bed some nights with my blood sugar at a “good number,” only to wake up at 3 a.m. shaking and drenched in sweat. When that happens, I have to grab my supplies and stumble into the kitchen to eat until I feel like a human being again, or sometimes give myself an emergency shot of glucagon if I'm low enough. I have sat up in bed on nights like this, unable to fall back asleep, thinking about how shitty it felt to know that I had just quietly fought what could’ve been the battle of a lifetime if I hadn’t been able to wake up on my own.

As I’ve gotten older, I have gained access to more advanced technology that helps me manage and overcome my disease on a daily basis (shoutout to my insulin pump – you’re the real MVP). I have also conditioned myself to speak up about my experiences and to try to teach those around me what it means to live an active life as a diabetic — like the fact that my condition doesn’t give me breaks if I feel like sleeping in on the weekend, and it doesn’t take days off no matter how much I feel like I need a vacation from it.

But my condition has taught me many valuable lessons. I’ve learned about empathy and how to respect the baggage that comes with dealing with a lifelong invisible illness — whether that diagnosis is mental or physical. I have also learned how to be an advocate. I want to stand up for the other kids who are too ashamed to speak up about their experiences with diabetes, especially those who neglect their self-care because they’re too embarrassed to ask for help in stressful situations.

It’s a type of shame I’ve experienced myself. A few summers ago, I was out to dinner with some friends after we had gone to see some of our favorite local bands, and I felt my blood sugar start to drop. Having lows in public, especially when out with friends, is always incredibly overwhelming and anxiety-inducing. Everything is suddenly too loud, too hot, too close, too confusing. My biggest fear is having a low blood sugar–induced seizure in front of my friends, thereby making my burden everyone else’s burden. It’s scary enough for me to take on my own diabetes and live with it every day; I want to protect the people who love me from having to deal with it, too. So that night, I tried to steady my shaking hands on the table and keep the world upright as I waved the waitress over.

“I’m really sorry to bother you, but do you mind bringing me a Coke before our food comes?” I asked. “I’m a Type 1 diabetic and my blood sugar is really low.”

Despite my quickly blurring vision, I remember the look of slight disgust on her face as she stepped back and seemed to bellow out to everyone within earshot. “Um, you aren’t supposed to have sugar if you’re a diabetic, don’t you know that? I guess I can bring you a Diet Coke, though ...” she trailed off.

I felt myself go into panic mode, knowing how sick I was starting to feel and how little time there was before I would pass out and need something much more serious than a glass of soda.

“No, that’s not actually not true at all,” I managed to tell her. “My blood sugar is low, which means I need sugar — and eating too much has nothing to do with why I have this disease. Can you please bring me my drink?” She wasn’t interested, and stormed off before hearing all of of my response.

Although it still sometimes hurts, I’ve come to understand that people who correct me when I’m just trying to survive are coming from a good place. They might have seen a news report about diabetes, or heard something about it in class, and figured they were being helpful by sharing this information with me. But no matter their intentions, countering these misconceptions and misinformation is one of the toughest things about living with any invisible illness — and not just diabetes. It’s something I’ve seen friends with depression and anxiety similarly deal with.

The bottom line is that no matter how healthy a person looks, or what you think you know about what they’re dealing with, you can’t make assumptions or pass judgment if you haven’t lived their struggle. We’re not going to cure diabetes by shaming the people who are suffering from it, regardless of the type of diabetes they have or what caused it. The best thing we can all do for each other is to stay grounded through our empathy, keep our minds open, and recognize that we have so much to gain from listening to one another. And we have to make sure to meet ignorance with education and empowerment, rather than allowing ourselves to be ashamed or to crumble under its weight. That is the way we will get stronger, together.

November is National Diabetes Month. For more information, visit the U.S. Department of Health’s website.

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