November 14 is World Diabetes Day and was established in 1991 by the International Diabetes Foundation and World Health Organization. This global diabetes awareness campaign takes place on the birthday of Sir Frederick Banting, who discovered insulin in 1922 along with Charles Best. To commemorate this year’s observance, Kaylea Bowers shared her personal experience with type 1 diabetes. Kaylea is a manager of Analytics at Porter Novelli in Atlanta, and she discusses all things diabetes on Instagram at @yay1c.
In-vis-i-ble (invizeb(e)l) / adjective / 1. Unable to be seen; not visible to the eye
Like so many others, I live with an invisible illness. And as I write this, part of my world is also invisible. I have lost, albeit temporarily, the ability to see out of my left eye. Why? Because of my invisible illness. Because of type 1 diabetes.
July 20, 1999 was the day my life changed forever. There are some things you never forget. The taste of the apple I forced myself to eat even as my body rejected it. The molasses flowing through my veins. The struggle to breathe, to take even one step forward. The embarrassment of vomiting and peeing my pants in a public movie theater. Waking up in the ICU with diabetic ketoacidosis. The stale, sterile smell of the hospital room and the small mustard yellow tiles of the floor. The soothing voice and gentle hands of Nurse Kim. The big, yellow smiley face Band-Aid on the inside of my elbow once the IV was removed. My eyes fluttering open to see Mom and Dad practicing injections on an orange as they put on brave faces. The sticky feeling of the grippy hospital socks on the floor as I shuffled by the nurse’s station with my IV pole. The sharp, searing pain of the kidney stones I developed. The confusion over why my clothes were practically falling off me after only a week.
As an 11-year-old entering 6th grade and throughout my adolescence, I wanted to keep my invisible illness just that – invisible.
I would only check my blood sugar and receive insulin injections in the nurse’s office. By the time I entered high school, I had developed extremely unhealthy coping strategies. Rather than face the beast head on, I locked it in a cage and tried to forget about it. Who doesn’t want to be a “normal” teenager?
The beast escaped the cage, though, and I did nothing to tame it. My blood glucose ran rampant. I would forget to take my insulin when I ate or would guess what my blood sugar was before taking an injection. Worse yet, I sometimes intentionally restricted insulin as a result of diabetes burnout and in the hopes of losing weight as a young woman – another dangerous attempt to feel “normal” that I later learned is an eating disorder known as diabulimia. I lied to my doctor and even to my own family about how frequently I was checking my blood sugar and what my numbers were. I lied to myself, thinking I was invincible to the complications of diabetes.
I dreaded visits to my endocrinologist, knowing every appointment would include some sort of lecture about losing a limb, kidney failure or going blind. I wanted to remain ignorant to my horrible hemoglobin A1c results, a measure of diabetes control. According to the American Diabetes Association, the goal for most people with diabetes is less than 7%, an average blood glucose of roughly 154 mg/dL. At one time, my A1c exceeded 13%, or 326 mg/dL on average. On top of all of the lies and denial, there was the anger and frustration, often with other people for not “getting” it.
In 2015, I started seeing a new endocrinologist, but I still wasn’t fully owning and managing my diabetes. After a couple of visits, he told me there was nothing else he could do for me. If I wasn’t going to put any effort into diabetes management, I was wasting his time, and he threatened to drop me as a patient. Leaving the doctor’s office in tears that day, I realized his threat was the best thing that ever happened to me. I would not accept failure. I would conquer this disease. I would no longer let it be invisible. In fact, I would make it as visible as possible.
I’m now a proud cyborg – and no, I’m not making a joke. I wear an insulin pump called an OmniPod every day that functions as my pancreas. This little pod keeps me alive.
I also wear a continuous glucose monitor from Dexcom that sends my blood sugar reading automatically to my phone every 5 minutes, so I always have visibility into my health and how my sugar is trending so I can make any necessary adjustments. As one of Porter Novelli’s resident data wonks, these advances in technology excite me on so many levels.
Anyone who knows me will often see me with these devices in very visible places. I do this intentionally! I love when people ask me about what they are, what they do, or why I’m wearing them. My diabetes is a part of me. Accepting it and no longer allowing it to be invisible has been life-changing in the most positive way. Embracing this disease has empowered me to dispel the myths and comments that come from a place of misunderstanding that so many T1Ds are accustomed to hearing. For example:
Myths/Comments v. Reality
“Can you not give yourself a shot in front of me?”
I need insulin, or I will die, easily within a week or so. I can’t worry about my disease being an inconvenience for other people.
“You poor thing. You must not be able to eat that.”
We can eat a normal diet just like anyone else! I just need to keep an eye on my blood sugar level and take insulin if I’m eating any sort of carbohydrate.
“You’re diabetic? But you don’t look overweight.”
Type 1 diabetes is not at all related to being overweight, and type 2 diabetes can also affect thin people.
“I could never do that. I hate needles.”
You would be surprised by what you can do when your life depends on it. It’s easy when your choice is deal with needles or die.
“Oh, you’re like my [insert relative here]! They take pills for their diabetes.”
Type 2 diabetes is actually quite different from type 1 diabetes. My body does not produce insulin at all, so I have to take insulin subcutaneously. Type 2 diabetes means the body doesn’t produce enough insulin or doesn’t use it properly. It sometimes requires insulin but can also be managed through diet, exercise or oral medication. And for what it’s worth, my diabetes is also not the same as your cat’s diabetes.
“You probably got it from eating too much sugar, right?”
Type 1 diabetes is an autoimmune disease in which the immune system destroys the insulin-producing islet cells in the pancreas. Scientists still don’t know the exact cause, but they think genetics and viruses play a role. Type 1 diabetes is not preventable.
“Your blood sugar is low. So you need insulin, right? // Your blood sugar is high. Do you need food?”
Taking insulin when blood sugar is low can quickly lead to death. Conversely, insulin is required to bring down a high blood sugar.
More and more people are being diagnosed with type 1 diabetes, including my younger brother and one of my younger sisters. According to the Centers for Disease Control and Prevention, about 1.25 million Americans currently live with type 1 diabetes, and that figure is projected to grow to 5 million by 2050. I continue to pray for a cure, but until that happens, I’ll continue to use my platform for education and advocacy.
This entry appeared in Porter Novelli’s annual We Stand for Love campaign, an employee-driven effort – originally in response to the white supremacist rally in Charlottesville, VA in 2017 – which aims to combat discriminatory or hateful messaging with our own experiences standing for love.