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November 13, 2021 — 12:03 PM
While some health issues are visible to the outside world, many people face chronic conditions that don’t have externally visible signs or symptoms—also known as invisible illnesses. In mindbodygreen’s new series, we’re giving individuals with invisible illnesses a platform to share their personal experiences. Our hope is their stories will shed light on these conditions and offer solidarity to others facing similar situations.
At age 12, I was diagnosed with type 1 diabetes. I had been experiencing symptoms for months, but wasn’t able to put the pieces together until I was lying in the pediatric intensive care unit, surrounded by machines and covered in tubes.
At first, my doctor didn’t believe me.
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.
The nurse pricked my finger, read out the number ‘465’ to the doctor, and her jaw dropped. “I’m so sorry, but you have type 1 diabetes,” she told me. “You need to go to the hospital immediately.”
All of my symptoms started to make sense.
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 100, 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?
Luckily, since my diagnosis, I haven’t had a low so urgent that I lose consciousness, and my highs never last long enough to do any damage. With the right treatment, type 1 diabetes is manageable, but it’s important to know how serious it can get if you stop taking care of yourself.
How I manage my type 1 diabetes.
For treatment, I learned I basically needed to use medical technology to mimic the job of a pancreas. In a non-diabetic person, the pancreas will release insulin to offset any amount of glucose that enters the bloodstream. Since my pancreas was unable to do this, I had to inject myself with insulin using a syringe, multiple times a day, to match up whatever I was planning on eating.
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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 am also extremely lucky that I have access to insurance that helps me pay for these supplies, as many of these technological advancements are extremely pricey, along with the absolutely drastic insulin price increases in recent years.
Common misconceptions about the condition.
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.
One of the biggest things people fail to understand is that type 1 diabetes and type 2 diabetes are two very different conditions. With type 1, the pancreas completely stops producing insulin. Whereas, with type 2, the pancreas still produces insulin—just not enough. Because of this, the treatment for type 2 diabetes is more often oral medication, and the condition can even be reversed with a healthy diet and exercise. Type 1 diabetes has no cure and no possibility of reversal, so hearing things like ‘Did you know cinnamon can reverse diabetes?’ is never helpful, and always irritating.
One of the most helpful pieces I can offer to anyone with type 1 diabetes is to seek out support, and be willing to accept help when you need it.
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!).
Another common misconception is in regards to what type 1 diabetics can and can’t eat. With the right amount of insulin, I can eat pretty much anything I want, as long as I’m paying close attention to my blood sugar. The only seriously off-limit options are highly concentrated amounts of sugar (soda, syrup, juice, etc.), but it’s really OK for me to have a slice of birthday cake at a party, or an ice cream cone on a hot summer day.
What I want people to understand about type 1 diabetes.
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 at 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 to 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 time out, 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 healthcare 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 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!
Diabetes has taught me so much, and truly shaped me into the person I am today. I’ve learned to not only accept it, but embrace it as a part of who I am. Since my diagnosis, I’ve learned resilience in tough times, patience, acceptance of the good with the bad, and the importance of surrounding myself with an amazing support system. While I would give anything to have my condition go away—even if just for a day—I’m still hopeful for the future of technology, and will continue making do with the resources I have.