“Is that yours? I think you might have dropped something.” The stranger behind me in line at the store sneers, contempt and disgust heavy in her tone. My gaze follows her line of sight, before I see the vibrant orange cap of a syringe, a familiar image. I pick up the rogue needle with all the nonchalance in the world. I am no more than twelve, but I’ve already held thousands of their thin, plastic barrels between my fingers, and this feeling is ingrained in the tough scar tissue that rests under my skin. I hurriedly thank the woman as my mom and I leave the store. It’s not every day a medical condition gets mistaken for a drug addiction.

Throughout America, there is a prevailing misconception that diabetes is a singular condition inflicted upon oneself, something you get from eating too much sugar that can be reversed with the newest fad diet or pill advertised on commercials. What most of the “experts” claiming this information leave out is that diabetes comes in these two distinctive forms, with different causes, treatments, and impacts. Type 1 diabetes is a serious and incurable illness that comes with hidden social consequences alongside the disease’s constant demand for attention and mental strength.

After enduring two months of constantly escalating sickness, I was diagnosed with type 1 diabetes at seven years old. On January 7^th, 2009, I was brought to the emergency room when my senses had gone, and a feeling of perpetual discomfort radiated from an indeterminable location inside of me. All I wanted was a place to lie down and sleep. I was dying. The next thing I remember is the loud clamor of pilots and doctors working to load me into a medical helicopter, the powerful chopping noise of the rotors overhead, and the cries of my mother begging to come with me. Shortly after, I was admitted to the intensive care unit at the INOVA Fairfax Hospital. Sometime over the eight days in the hospital, I was told I had type 1 diabetes, three words that meant nothing to me then but would linger around me from that moment on, taking an invisible toll on the rest of my life.

I didn’t go to school for a while. Instead, I would sit  in the waiting room of a doctor’s office where my mom quizzed me on spelling as we waited.

“Here’s a tricky one: endocrinologist,” she dared me with a grin on her face. I scrunched up my face and mouthed each syllable, before blurting out “e-n-d-o-c-r-i-n-o-l-o-g-i-s-t.” While my friends were in school learning cursive and multiplication, I had to learn how to live with a dysfunctional pancreas. I learned how to prick my finger and coax a drop of blood from it to check my glucose levels. Two hundred is a high reading, seventy is low. Insulin corrects a high reading and eating sugar counteracts a low. After these appointments, we would go to a nutritionist, where I would sit playing with elaborate rubber replicas of food as a woman lectured us on how to count carbohydrates in what I was eating to give the proper dose of insulin. If only it was as simple as following the instructions from doctors.  I didn’t know there were so many more decisions I would have to make on my own.

Taking four shots a day became routine, as did the eight-or-so finger pricks a day to check my blood glucose. Although none of the other second-graders were doing these things, it became normal to me. Yet, even years later, this disease creeps up on me in moments without warning, overwhelming me when I least expect it. It happens during tests, exercise, in the middle of the night. My pencil slips from between my fingers, at the same time as my concentration slips away from me, simply because my blood glucose levels have fallen too low. I press my eyelids together a little harder, trying to shake the dizziness from my vision. Blood sugar levels change for no apparent reason but, in reality, are caused by a combination of complex biochemical factors that are so nuanced they are impossible to perfectly predict. Although insulin dosages are calculated based on carbohydrate counts, the other nutrients present in the food can influence blood sugar as well. Beyond that, stress, hormones, and other environmental factors affect blood glucose levels. To control glucose levels as much as possible, type 1 diabetics take insulin injections throughout the day. This includes dosages before eating in addition to a longer-acting insulin that works to maintain blood sugar levels throughout the day by imitating the small amounts of insulin constantly present in the blood stream of a person with a functional pancreas (Smith-Marsh, 2020). Just hours before my blood goes low, every thought gives me a headache because my glucose reading is too high. No matter what I do, it refuses to go down. Each day, my blood sugar levels are like a rollercoaster, plummeting down and skyrocketing up, no matter how much I attempt to control them. In these moments, I am overcome by a sense of solitude, as I look around the room and realize nobody else can see or understand what I am suffering through and trying so hard to hide in that moment.

Many diabetics struggle to push through their condition without a full understanding of the impact it may have on their mental state. A team at University of Wisconsin studied a teen diabetes forum and found that “emotional well-being” was a theme in fifty-six percent of posts. Denial is one common manifestation of the emotional toll, referenced in 7% of the study’s posts on emotional well-being (Ye et al., 2017). Some diabetics ignore the severity of their condition as a coping mechanism.  Others feel the need to prove that they are “normal,” others decide to stop checking their blood glucose levels, and many become exhausted from the intensity of care required. I have always downplayed the severity of my diabetes to others, not telling people unless I have to, saying that it is “no big deal,” for fear of seeming inhibited or abnormal. But the harsh reality is, it shapes your story more than you want. It may be an invisible illness to others, but the late nights from uncooperative blood sugar levels, hospitalizations, and everyday frustrations are all too real. Yet, when others don’t see or hear about these challenges, their own conclusions about diabetes manifest as derisive comments.

“You get that from eating too much sugar, you should have controlled what you ate…But you don’t look sick…Well you’re lucky it’s just diabetes.”

And an especially popular one, usually preceded by a particularly sugary snack or indulgent meal and followed by laughter:

“I’m going to get diabetes from eating this.”

When I was younger, comments like this never seemed to faze me. From the day I was diagnosed, I remember hearing that I should never let diabetes define me, which I translated into dissociating from it somewhere along the way. I didn’t truly view diabetes as a part of myself until I was in high school, around eight years after I was diagnosed.

As a sophomore, I was just as excited as my sixty classmates for our weeklong marine biology research trip to a remote island in the Bahamas–until my parents started to ask what specific accomodations would be made for my diabetes. Our initial conversations with the trip organizer were rather one-sided: “Nicole, I don’t think you should go on this trip,” was the absolute last thing I wanted to hear from my magnet school program director, as I sat in his office with my dad, anxious to convince him I could go.  This trip was the cornerstone of our four years at this school, the experience of a lifetime. And now I sat in front of the man who loved this trip more than anyone else, a man who knows nothing about my condition, and he doesn’t want me to go. He brought up concerns about access to emergency medical care and said that the intensity of the activities wouldn’t be suitable for me. When he said this, I couldn’t help bursting into tears. In this moment, my stubbornness shone through as I reminded myself that although diabetes is a part of my life, it does not control me, and I made my intention to spread this message very clear. I brought the situation up to my endocrinologist who consented to the trip. Even after hearing approval from a doctor, it took  months of arguments and planning before getting permission to go on the trip. It was the first time I recognized and fought against the stigma of diabetes.

After that, each misinformed comment I heard spiked my anger. It hurts especially badly when you hear a friend joke about it. I counter their laughter with a harsh tone in my voice, but it is too soon forgotten. The stigma associated with diabetes is too developed to be shouted down by one voice in a crowd. Diabetes is seen as a character flaw, something brought upon yourself. This image generally stems from the perceptions of judgemental bystanders who believe type 2 diabetics are inactive and unhealthy. Not only is this gross generalization harmful to the people suffering from type 2 diabetes, but type 1’s as well, who respond to this stigma by attempting to hide their invisible illness even further. Type 1 diabetics understand the struggles of people suffering from type 2 far beyond the general population, but can still become frustrated by the associations drawn between the two. Members of the type 1 community have even proposed a name change for their condition as a potential escape from scrutiny (Liu et al., 2017). The treatment of type 2 diabetes is often less intensive than for type 1 diabetes and thus the full extent of struggles faced by diabetics like me can be lost through hasty associations.

As if the misconceptions and stigmas were not enough, pharmaceutical companies often seem to be downplaying the importance of insulin as evidenced by the deaths from drastic measures that patients take to manage living with diabetes when they cannot afford the exorbitant prices these companies set.  An article published in the Washington Posthighlights the story of a 27-year-old who died after rationing his insulin in an effort to expose the astronomical cost of treating diabetes (Stanley, 2019). Google “rising insulin prices” or “insulin rationing” and countless stories of similar struggles and deaths will appear. Insulin is essential for a diabetic’s survival, yet costs over $250 per 10 mL – a point made at a Congressional committee hearing on the rising costs of insulin (Lipska, 2019). Nevertheless, medication is just one of many costs involved with diabetes. There are blood glucose monitors, needles, test strips, Glucagon pens, and much more. The costs can be overwhelming. The more than tripling in prices of insulin in the past nine years has not caused the same media outcry as the raising of EpiPen prices, but the results of it are even more devastating. At the same Congressional hearing, medical researcher Kasia Lipska testified that around one in every four type 1 diabetics rations their insulin, even though it is a life-saving medication patients need to take every day of their lives. When insulin was first invented, the patent was sold for a mere dollar (Lipska, 2019). The scientists behind it have saved thousands of lives each year, and a diabetes diagnosis no longer sends you to your deathbed. Now the price tag could.

Type 1 diabetes can be a physical, mental, and even a financial malaise, taking on a new form each day. We may live with the same condition, but each experience with it is completely unique. It is a battle, with highs and lows, and it is terrifying. Strides have been made in its treatment, but diabetes is incurable, and it is a disease that can kill. Every so often you are reminded of this. Around the time I turned thirteen, I read a story about a young diabetic girl who died in the middle of the night. Her blood sugar dropped too low and she never woke up. It’s called dead-in-bed syndrome and it terrified me more than the time my diagnosis had left me mere minutes from death. It was the only thing on my mind as I fell asleep for a year or so after I heard about it. I kept my eyes open for as long as possible and tried to convince myself that my blood sugar level was high enough. Even so, I couldn’t go to sleep without telling my parents I loved them, just in case.

Type 1 diabetics live in a state of constant uncertainty and must always be prepared. Finding ways to balance a chronic disease with the rest of your life is a challenge, but one you must accept. This illness is unique, in the sense that you are your own doctor. Throughout the day, I make my own dosage decisions, glorified estimations, for a drug that could kill me with a few extra microliters. Managing diabetes is impossible to perfect; you make mistakes constantly. And I learned to live with that, knowing that these mistakes may someday take my vision, lead to kidney failure, or result in an amputation. Occasionally, I tap my fingers together just to make sure I still have feeling in them and remember it for a time when I may not.

I am proud to be a type 1 diabetic. I have survived ten years, given myself over 10,000 shots, and endured over 25,000 finger pricks. I wear my illness in the form of a white plastic insulin pump and constant glucose monitor– just two more needles. The devices that have saved my life have left scars, scrapes, and bruises on my skin. The disease has left even more scars inside of me, from the times it was ruthless and uncontrollable. There may someday be a cure for diabetes and the scars will fade from my skin, but the ones underneath will never disappear.

The next time you hear a joke about diabetes, stop for a second, and remember this. Remember that to a diabetic, the struggles lie even beyond the needles and finger pricks. The hardships lie in the spontaneity we have given up, the maturity we learned all too quickly, the exhaustion, the relentlessness. It’s easy to make it look effortless because we have no choice. Before you form an ignorant opinion on diabetes, remember that it is a complex illness. Stop your jokes, because diabetes is serious. It is a disease that kills. Enduring it is an accomplishment, not a joke.

 

References

CDC (Centers for Disease Control and Prevention), Division of Diabetes Translation. (2020, August 19). Retrieved from https://www.cdc.gov/diabetes/index.html.

Lipska, K. J. (2019)“Hearing: Priced Out of a Lifesaving Drug: The Human Impact of Rising Insulin Costs’ Subcommittee on Oversight and Investigations (Committee on Energy and Commerce).” “Priced Out of a Lifesaving Drug: The Human Impact of Rising Insulin Costs” | Committee Repository | U.S. House of Representatives, Unites States House Committee on Energy & Commerce Oversight and Investigations Subcommittee, 2 Apr. 2019, https://docs.house.gov/Committee/Calendar/ByEvent.aspx?EventID=109502.

Liu, N. F., Brown, A.S., Folias, A.E., Younge, M.F., Guzman, S.J., Close, K.L., Wood, R.  (2017). “Stigma in people with Type 1 or Type 2 diabetes. Clinical Diabetes 35:27–34. doi: 10.2337/cd16-0020.” Erratum. Clinical Diabetes, 35:262. doi:10.2337/cd17-er01.

Smith-Marsh, D. E. (2019). Type 1 Diabetes and Insulin. EndocrineWeb, www.endocrineweb.com/conditions/type-1-diabetes/type-1-diabetes-insulin.

Stanley, T. (2019) Life, death, and insulin. The Washington Post Magazine, 7 Jan. 2019, https://www.washingtonpost.com/news/magazine/wp/2019/01/07/feature/insulin-is-a-lifesaving-drug-but-it-has-become-intolerably-expensive-and-the-consequences-can-be-tragic/.

Ye, C.Y., Jeppson, T.C., Kleinmaus, E.M., Kliems, H.M., Schopp, J.M., Cox, E.D. (2017). Outcomes that matter to teens with Type 1 diabetes. The Diabetes Educator, vol. 43, no. 3, June 2017, pp. 251–259, doi:10.1177/0145721717699891.

 

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