I Was Diagnosed With Type 1 Diabetes At Age 12: What It's Like Living With The 24/7 Illness

As a seventh-grade girl, I loved any excuse to get out of class, so I wasn't particularly worried when I started feeling sick. The moment I felt slightly nauseous, I ran to the nurse's office with the hopes of being sent home. Rather than the standard "eat some saltines and lie down" routine, the nurse called my mom to pick me up—next thing I knew, we were heading to the pediatrician.

Since my last checkup (just a few months prior), I had lost nearly 20 pounds. As an otherwise healthy 12-year-old girl, the rapid drop from 90 to 70 pounds was significant. Horrified and confused by the news, I was relieved to at least be in the safety of a doctor's office with my mom. Surely they would be able to tell me what was wrong and quickly fix it, right? Instead, the doctor shot my mom a worried look and separated the two of us—taking away the only sense of comfort I felt at the time.

The doctor immediately started to interrogate me, asking why I had lost so much weight, why I would want to do this to myself. I replied that I had no idea what was going on. She was convinced I was lying to her, that I had an eating disorder and was forcing myself to throw up after meals. I felt hopeless and ignored, knowing that no one believed me. After a few minutes of back and forth, she resigned that theory and offered up one more possibility. That's when she tested my blood sugar.

While talking to the doctors and learning about the typical symptoms of type 1 diabetes, I started to make sense of the way I'd been feeling for the past few months. (I also learned that a normal blood sugar level is between 70 and 1001, which is why my 465 reading was so concerning). 

The most common symptoms of type 1 diabetes are extreme thirst and frequent urination: two things I had been dealing with the past few months without really questioning them. I remember walking into my house from the school bus every day, rushing to the bathroom while also feeling the strongest desire to chug a gallon of water. Had I known this was an indicator of the illness, I probably would have gone to the doctor sooner. 

The diagnosis completely turned my life upside down. Although type 1 is genetic, no one in my family had a history of diabetes, so no one knew what to expect. Not only did I need to go to the hospital to actually get better, but my family and I also needed to get a full education on what diabetes was, how to deal with it, and what steps I had to take every day to keep myself alive and stable. 

While in the hospital, I learned that type 1 diabetes is an autoimmune condition that occurs when your pancreas fails to produce insulin, so you lose all control of your blood sugar levels. If my blood sugar gets too low, I could pass out, have a seizure, or worse. And if it goes too high over a long period of time, my organs will start to fail, I could go blind, and slowly die. Scary, right?

Along with the manual delivery of insulin, I had to start pricking my finger before every meal to test my blood sugar. The constant stream of blood and needles every day was a tough adjustment—but when it's the only option, you make do! 

After six months, I was able to switch to an insulin pump, which was a game-changer for me. I was no longer following a strict eating schedule with a limited amount of carbs I had planned for each morning. With the insulin pump, I could eat whenever I wanted—as long as I counted how many carbs were in each item and accounted for what my blood sugar was at the time.

I eventually reached a point where I could calculate the total amount of carbs in anything just by looking at it. No longer having to pull out a calculator at meals and carefully measure each individual bite of food was a relief. But still, to this day, I'm never not thinking about it in the back of my head. 

In the years since I've been diagnosed, technology has made huge strides and completely changed my day-to-day experience with diabetes. Instead of constantly pricking my finger to test my blood sugar, I'm now able to wear a continuous glucose monitor that constantly measures my blood sugar levels and gives me a reading. Having two medical devices stuck to my body at all times isn't ideal, but I'm so grateful for how much easier it has made everyday life.

I've now been living with type 1 diabetes for over 11 years, and I can proudly say that it hasn't stopped me from living a normal life. That being said, there are a lot of misconceptions about the illness.

Type 2 diabetes is also a lot more common than type 1 (over 95% of diabetics have type 2), which is why I became so accustomed to hearing "Oh you're diabetic? My grandma has that!" by so many people after I was diagnosed (spoiler alert: It's probably a different type!).

The hardest thing about living with diabetes is there's simply no escape. It has the tendency to pop up at the most inconvenient times, like when I'm about to go on a walk and my blood sugar decides to drop, leaving me stuck in the house until it rebalances. Or when I'm heading to dinner and my blood sugar spikes so high that I can't eat anything. 

Type 1 diabetes is a 24/7 illness, 365 days a year, and you always have to be thinking about your blood sugar levels, carb counting, and insulin. There is nothing you did to cause it, and there is no cure for the disease. Some days can be great, with stellar blood sugar levels all day and no issues, but some days you just want to give up and take a timeout, which simply isn't possible.

Many type 1 diabetics struggle at some point in their life with diabetes burnout, where the physical and psychological toll of the condition becomes too frustrating, leading them to give up and let their numbers run high. While friends, family, and health care professionals are all great resources, no one will really understand the everyday struggle of diabetes without experiencing it firsthand.

One of the most helpful pieces of advice I can offer to anyone with type 1 diabetes is to seek out support and be willing to accept help when you need it. If I'm lying in bed with low blood sugar, too faint to get up, I've realized how much simpler it is to text someone who's home and ask for a juice box rather than fighting to get up myself. Educate your friends and family about what exactly they can do to support you!