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No one prepares you for isolation, yet everyone inevitably comes face-to-face with the treacherous emotion. Not only can you feel the mental enclosure of isolation, which I would argue would be scarier than physically being isolated, but the enclosure can make it difficult to see an end to the loneliness. God-forbid anyone ever must face both types at the same time, because it might possibly be the most difficult experience that any human can face.
I have always felt, what my ingenuous brain at the time would classify as, isolated. Growing up as one of the only black kids in a small, rural community can make you think such things. The ignorant racist comments like, “Can I touch your hair?” or, “I went to the beach, and now I’m almost as dark as you!” didn’t help my feeling of not being able to relate or connect with my peers. I never would have imagined, however, that a disease as indiscriminatory as type 1 diabetes would make me more alone than I did physically among my white peers. With my white peers, it was my skin color that differentiated me. With my disease, it was my body’s inability to function correctly like other people’s that differentiated me.
The “invisible disease” had entered my life and was silently killing me. Type 1 diabetes is a genetic chronic disease where the pancreatic cells in the body slowly, or suddenly in the unfortunate case of some diabetics, stop making insulin due to the immune system’s irregular attack on itself. Not only is the occurrence of the disease invisible, but the body’s cry out for help is also difficult for the eye to see.
Another long day of my life (filled with AP courses about electron configuration, working on corner kick plays for my team’s next soccer game, and meeting with other students, who are also passionate about educational advocacy, to create a respond to the Department of Education’s call-back to allow student voice to be present) was prevailing. I remember weakly walking out of my room at 7:00 p.m. after my last meeting of the day and passing out inches away from my stairs. I was out for a couple of minutes. I remember waking up to my mom staring at me in fear. To calm her nerves, I proceeded to tell her it was just exhaustion from the day. My whole life to that point has been a constant replication of days such as that, and my body’s response had never reached that extent. My own chronic illness was non-existent to me and further allowed the “invisible disease” to dominate my health.
With similar abrupt symptoms transpiring in my life, my family and I decided it was time to seek answers. The first doctor I saw told me, after giving me a basic check-up like I was there for my annual appointment, the issue was iron deficiency. After taking iron supplements in response to that “diagnosis” and seeing no amelioration, we continued our search. The next doctor told me it was a heart issue and sent me to a cardiologist, who said it was in-fact not a heart issue due to my heart’s quotidian health. The proceeding doctor I saw reluctantly set up a blood-test for me after my mother invaded her with the “concerned mother questions,” in which they checked everything imaginable except my blood sugar. Over the course of 2 years, my doctors’ inability to find the cause of my suffering, started to make me feel just as invisible as my yet-to-be-diagnosed disease.
Eventually, I was diagnosed. Eventually, I was treated. Eventually, I realized this “invisible disease” wasn’t as ghostly as I thought. Tiny dark blue bruises would appear on my arm after I would inject insulin from my prescribed pen into my flesh so that the carbohydrates from my meals would be able to process in my body. Bruises eventually heal and disappear, most of mine did not. After changing my glucose sensor, that had to be placed in areas on my skin that were usually on display to those around me, I noticed chemical burns from the product left on my skin. My mental health was forever altered in the way where now people could notice my days of struggle. I could no longer deal with my mental health in a high functioning way, like I used to before my disease occupied my body. With the physicality of my disease now appearing to the world like a vitrine, I’ve never wanted to be more invisible.
Due to my bruised infested skin, I found myself only wearing cute, wooly sweaters from H&M, even though it was 70 degrees outside. My attempt to hide them wasn’t feasible, I knew it wouldn’t make my insulin shot bruises completely heal and disappear. I wanted to only insert my glucose sensor on the parts of my body that were more hidden, even though my endocrinologist specifically said scarring would be a result of that. I realized that no matter how hard I tried to fit into the mold of this “invisible disease”, I couldn’t. Type 1 diabetes isn’t invisible at all, and type 1 diabetics, like me, aren’t invisible either.
The first email I received as a prospect advocate for educating the public about type 1 diabetes, was relayed to me when I won a scholarship under the non-profit organization Beyond Type 1. This organization has made it their mission to fight against the stereotype that type 1 diabetes is an “invisible disease.” This stereotype also claimed the disease is “one of the better chronic illnesses” due to its “invisible attributes,” which couldn’t be more far from the truth. I found myself yearning to be a part of this mission to reclaim the truth about type 1 diabetes.
Interviews after interviews were graciously given to me as an opportunity to share how concretely this disease is a part of my life, and how I have accepted the vividness of the disease’s reign within my body. I remember one interviewer asked me, “What is one thing you want to tell other type 1 diabetics who may be listening to your story right now.” Such a generic question, in my opinion. I just don’t want to tell them one single thing, when there are a thousand obstacles that we need encouragement through. However, I knew the essence of what was needed to be heard. I replied to the interviewer and said, “I would tell them that we are not invisible, our scars are not invisible, our struggles are not invisible. We are a vivid part of this world, and our stories and experiences need to be thoroughly shared.”
My whole life I have felt isolated, unrelatable, outcasted, and most distinctly invisible. The fact that I am an African American, introverted woman amplifies that to the extreme. My disease, based on the ideals of those who don’t suffer from it, was supposed to make me feel even more so. It didn’t accomplish that. In fact, it fueled a fire in me to make sure that the whole world knows that this chronic disease is not invisible. It is significantly apparent in our community of loved ones, which provides further evidence for why society should make it their mission to increase their cognizance of type 1 diabetes. This idea of invisibility needs to be combatted with a mass push to better understand those who suffer internally and face the physical repercussions of type 1 diabetes. Type 1 diabetes is not invisible. Type 1 diabetics are not invisible. I am not invisible.
Anna Williams is a McConnell Scholar in the class of 2025. She is studying biology at the University of Louisville,