The Roller Coaster of Being Type 1 Diabetic

Updated on December 4, 2016
Kayla Yellen profile image

Kayla is studying psychology and public health. One day, she hopes to be a clinical psychologist who helps people better their lives.

Diagnosed as a Child

I was diagnosed with type 1 diabetes when I was ten years old, and I’m not going to lie—most of my tears shed that day in the doctor’s office came from the thought of never being allowed to eat Reese’s peanut butter cups again! (This thought is still truly terrifying.)

Although I quickly learned that my fear was unfounded, the diagnosis did force me to grow up very fast. I could not eat so much as a carrot without calculating how many grams of carbs it contained to make sure I gave myself the right amount of insulin.

For about six months I used insulin injections to control my blood sugar, which forced me to plan out all my meals in advance. I remember going to birthday parties and not being able to eat cake because I had already used all my insulin for the afternoon on other food. It may not seem like a big deal today (well, maybe it does, because who doesn’t love cake), but as a newly diagnosed fourth grader it would leave me in tears. All I wanted was to be carefree and not to have to manage every aspect of my food and activity. I began to feel left out and excluded in any social situation involving food.

Switching to an Insulin Pump

As soon as I could, I switched to an insulin pump—because, well, just like any other shot you get at the doctor’s office, injections are a downer. (Don’t get me wrong, though. Some people do prefer injections because pumps are really intrusive to your body, and it’s all about what makes you feel comfortable.)

My pump gives me much greater flexibility, allowing me to feel more in control of when I eat and what I eat, which is awesome. Let’s be honest, we all have those 3 a.m. cravings for pizza, and I am no exception. The only difference between you and me when it comes to food is that my body does not make insulin. If I want to eat something I have to administer insulin manually through my pump, which is a natural bodily process for most people. I have become a pro at looking at an item of food and knowing exactly (or almost exactly) how much insulin to give myself (it’s really too bad that’s not a talent I can brag about on my resume), but that does not mean that I don’t face the challenges that come with this illness.

It's the Little Things

It’s truly the little things that make type 1 so difficult. It’s the days when I go for a run on the treadmill only to step off and have my vision blur, feeling like I’m going to pass out from low blood sugar that I did not feel while I was running. It’s the days when I’m stressed out because I have an exam coming up and a paper due, and at the same time I can’t get my blood sugar to go down from 300 (normal for me is 120, anything above 350 can be dangerous). It’s the nights when I’m exhausted and I fall asleep—only to wake up around 2 a.m. in a cold sweat, shaking and confused, and realize that my blood sugar has dropped dangerously low. It sometimes takes all my energy to reach for the juice boxes that I keep next to me on my nightstand for exactly this purpose (Juicy Juice saves lives). Often, I cannot fall back to sleep.

My Intensive Care Nightmare

Worst of all was last year when I ended up in the intensive care unit in the hospital for two days, fighting for my health, because my blood sugar went all the way up to 900 in the course of 10 hours. I still have horrible flashbacks and anxiety about those few days, because when a person’s blood sugar goes this high, it's a major health risk and can even be deadly. Because of this experience, it is hard for me not to panic now when my blood sugar goes even a little bit out of range. I sometimes feel so physically and emotionally drained, but these are the times when I have to fight the hardest.

Type 1 Stigma

That being said, the reason I have the most difficulty talking about being type 1 diabetic is because of the stigma that comes with it. People often think that I cannot eat sugar, which is not true. It can be very embarrassing for me to have people around me transform into the food police when they eat with me, double-checking if I can eat everything I plan to. If I want to eat that cupcake, I assure you I can do so.

It also becomes frustrating to explain that I did not do anything to cause this disease. I do not have type 1 because I ate too much sugar. I have this disease because my immune system for some unknown reason viewed my insulin-producing cells as foreign and destroyed them (thanks a lot, body). For this reason, my pancreas does not produce insulin. This is different from type 2 diabetes, which can be classified as insulin resistance and can typically be controlled through diet and exercise. I am certainly not trying to downplay the challenges that come with type 2—both diseases are incredibly difficult—but it’s importance to know the difference.

The most damaging part of this stigma, and the reason I often choose not to tell people I am type 1 diabetic, is because people often feel sorry for me when I tell them. They even treat me differently sometimes (and then I feel awkward, and I start rambling). Having a chronic illness, although brutal at times, has only made me stronger and more self aware than I ever thought I could be. I have also learned to expect the unexpected, which is a valuable life skill. I feel very fortunate that right now type 1 is my biggest challenge. I remember being in the hospital for the first time and seeing cancer patients and children in need of serious organ transplants and surgeries, literally fighting for their lives in hospital beds. It may be difficult sometimes, but I truly feel blessed that I have a disease that allows me to live a normal life, and do everything I want to do.

Educating and Empowering

My goal in writing this article is to educate those who are unaware of what it means to have type 1, and to empower those who have this disease who may ashamed of it, like I used to be. I believe education is the best way to achieve change, and if you have a question about type 1, just ask! It is much better than making an assumption that may negatively impact a person who faces these challenges every day. Type 1 can be exhausting and awful at times, but it’s all part of my adventure and my story. I am proud to finally be in a place where I can share my experience with others.

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