When I was twelve, my neighbor told me to take off his son’s Darth Vader mask because I had “enough machines on already.” At ten years old, two years after being diagnosed with Type 1 Diabetes on account of my defective immune system, I was adorned with an insulin pump and an implanted Continuous Glucose Monitor (CGM). Both of which allowed me to have better control of my Diabetes. I could finally be like other kids by not having to take shots or poke my fingers for blood sugar readings at least ten times per day. What I didn’t know was that being adorned in these devices served to benefit my health. As they tightly control my blood glucose (BG) levels and allow me to adjust my baseline insulin throughout the day. With a pump and a CGM, my blood sugars were much more under control. Yet my emotions on the playground were tumultuous, as other children referred to me as a “robot” and would run away from the “Diabetes girl” as to not “catch” Diabetes.
With the support of my family and friends, I eventually was able to ignore them and become proud of having Type 1 Diabetes. My A1c (a test administered at doctor’s appointments to measure the amount of hemoglobin A1c in your blood as a means to find one’s average blood glucose) read about 6 — close to as if one did not have Diabetes at all. Eventually, the playground bullying led to me permanently disconnecting my CGM, which at that time the model was a bulky device that rested on my upper arm. I was back to testing my blood sugar like in the old days but now at least I could hide something.
Once I approached high school and began having boyfriends. I became self conscious of wearing a pump when we would become physically involved. I always disconnected it. But I wasn’t embarrassed to use it in front of them and always put the device back before I put on my clothes. Diabetes was always a factor in these relationships — one guy was controlling of my Diabetes to the same extent that my parents were. He blamed my emotions on what he perceived to be a high or low blood sugar. Another boyfriend cared about my Diabetes and was not disgusted by me using my insulin pump or testing my blood sugar. Still, I always wore tight pants to smoosh the pump into my stomach with the elastic waistline even though I ended each day with a painful, red indent on my stomach.
The next year, I began dating a guy who looked in the mirror frequently; he would tell me what hair color he liked on me. And then the next day I would run and get a boxed dye of the same shade. Something about our dynamic made it feel as if he was better than me, although I know now that it came from my own insecurities (being it takes two to tango). When we became physically involved, I did my usual routine of secretly taking off my pump. However, unlike with my past boyfriends, I kept the pump off for over six hours so he wouldn’t feel it when he made any physical contact with me. I proved what I believed to be my worth by strolling around my house in shorts and sun dresses; free from a clunky, plastic bulge. I didn’t want to be seen any lesser than I imagined that he already saw me, so as a result, my BG level ran consistently at 300. I would run into the bathroom to give insulin, a temporary fix yet I had little baseline insulin in my system. So in April 2014, I decided to go back on insulin shots — to the frustration of my parents and doctor. Sure enough, my A1c shot up because I had less control over my glucose levels, and even after we broke up, my self esteem felt so improved by not wearing a medical device that I stayed on shots. To clarify, there is nothing wrong with being on shots at all. I understand why one does not want to wear a medical device. However, being on an insulin pump allows for more tight control over one’s blood sugars because baseline insulin can be temporarily adjusted throughout the day to accommodate certain circumstances (for instance, increasing the basal rate when the person is eating a slow-acting meal, or decreasing the basal rate if the person’s blood sugar is low).
Now, as a twenty one year old in college and Type 1 Diabetic of thirteen years, I take an inhalable insulin called Afrezza which is very fast acting and has been great on my blood sugars. For years, however, I refused to get on a sensor which would allow for control of my blood sugars, solely because I felt embarrassed of the way it looked. My neighbor’s remark that I had “enough machines [on me] already” and being called a “robot” and “Diabetes girl” on the playground still circulated in my head each time my doctor insisted I get a sensor.
One day in September of 2017, I noticed that I was getting a few floaters in my eyes. Although floaters (which are usually fleeting specks or ‘spider web’ shapes of either a white, black, or clear color in the eyes) are often harmless, people with Diabetes need to be especially cautious of their eyesight due to the possibility of developing Diabetic retinopathy if blood sugars are uncontrolled for a long period of time. I knew that by going off the pump and not being on a sensor raised my A1c level, as it had never gotten back down to a 6 after I stopped. Immediately I rushed to urgent care, where they told me that I just had allergies, but the floaters continued and I believed they had even gotten worse.
After five trips to two different opthamologists, I finally believed my second doctor, who I saw as a child at the Naomi Berry Diabetes Center in New York City. He said my eyes were, “boringly normal”. Though by that point, I had already decided that I needed to get on a sensor again to have tighter control of my blood sugars. The next day, I walked out of my endocrinologist’s office with a small Libre sensor on my arm. It was not as alert or long lasting as the sensor I used to be on, but it was a compromise I made to my family, my doctor, and most importantly: myself.
After being on the sensor for months, I have suffered from allergic reactions to bandaids that I use to cover the sensor so it looks more like a patch of some sort (apparently I am allergic to band-aid adhesives, who knew?). I have also bought an entire new wardrobe that consists of long upper sleeves and off-the-shoulder tops. My biggest fear was going to my new boyfriend’s family barbeque. This would be my first time meeting them and I was afraid that people would think I was on a birth control or Nicorette patch — not that anything is wrong with either. In fact, both of these are great. Though for some reason, I did not want them to think that I was on birth control or a smoker. For months, I had planned out the type of outfit I would wear to the barbeque and prayed that TJ Maxx would have one that didn’t look like it was made for a fifty year old mother. At the time, I felt thankful that my off-the shoulder top I frantically bought the day before covered up the sensor.
In the early morning, however, I developed painful blisters from the bandaid, and had to remove it. I planned to sit for breakfast at a sideways angle and cross my arms as an attempt to hide the device. When his mother came outside to their beautiful porch with a cup of coffee, though, she asked the question I dreaded — “Erin, what is that on your arm?” She asked with an air of curiosity; there was no judgment in her voice.
Stuttering my response, I could feel my face become hot. It became my most feared question from everyone, being it looked like a security pin on a Gucci purse in the mall was stuck into my upper arm.
“Oh — uh, well, I’m a Diabetic, so this tells me what my blood sugar is.”
She and her husband asked questions about it, such as how it worked and if it helped me.
His mother and step-dad did not scowl or think it was gross like the children on the playground or how I had imagined anyone would react if I took off my bandaid. My responses were still fast as I wanted to discuss my device as little as possible. When we walked through those gates, I knew that his mom could see the circular device plunged into my skin. But I realized that the worst of it was over and it wasn’t as terrifying as I imagined. I also am lucky that I am now with someone who doesn’t care that I am wearing a medical device and in fact, finds my sensor interesting and wants to learn more about it.
Since going on the sensor, my blood sugars have improved dramatically, and I’ve even noticed a decrease in my eye floaters. I have looked down at the sensor with pride, rather than how I looked at my BG monitor with shame (being my levels always plateaued at around 180 mmo/mL). I realized throughout the years that although medical devices have made me feel insecure, being on shots (for me, personally — everyone has a different experience) led to ill physical effects in exchange for the relief that I could wear a dress with ease. Although my inhalable insulin works just as well as a pump, I am still unable to give temporary basal rates, which would help me. However, I have been on the sensor for two months and although I have faced embarrassment, recently I have stopped wearing the bandaid as much, and am not ashamed to wear tank tops. It has been a blessing for my health to be on a medical device. In a society where girls are held at such a high standard for their body and beauty, it was even more difficult to wear these devices. Now I have realized that I do not want to feel ashamed of wearing a sensor on me and have been coming closer each day to acceptance. Most importantly, I’ve realized that my health takes a precedence over impressing others.