Not the “Right” Type: How Medical Racism Destroyed My Health
by Taylor Johnson
Edited by Sarah Desouza
I was 15 the first time I realized that doctors might treat me differently because I am Black. It was not the first time I knew that the world would — between being called a “porch monkey” in elementary school and white boys explaining explicitly what Black girls are good for, I learned that well enough. But being diagnosed with diabetes was my first realization that I couldn’t trust the people who were meant to care for me and whose profession I desperately wanted to join.
I am one of those girls who grew early and have been essentially the same size since I was 13 or 14. As a cheerleader, track runner, and just overall active kid, I was curvy but muscular. So it was weird when my pants started literally falling off my body in high school. I was constantly thirsty, starving, and waking up at all hours of the night to pee. Classic symptoms of diabetes. I decided one morning after checking my grandmother’s blood glucose levels that I should check mine too just to ease my mind.The number was 364 much higher than the 70-180 range I knew we were supposed to keep my grandmother in. A visit to my pediatrician and a blood test later, I was diagnosed with diabetes.
The advice I was given was to watch my diet and make an appointment with an endocrinologist.
It took 2 months for me to get in at the nearest pediatric endocrinologist. We drove 2 hours to her office and the visit lasted 15 minutes. She looked me up and down, checked my a1c, and told me I was a Type 2 diabetic. She then said that she was going to prescribe a pill for my blood sugar but what she really recommended was that I lose 10-15 more pounds and see a dietician so that I could cut out all of the junk I was eating. My mom and I were really confused because she had never asked what my typical diet was or about my activity level. It seemed weird that she would recommend I lose more weight because my sudden 20lb weight loss was one of my scariest symptoms.
A year later, and I still did not feel physically or mentally well. I was terrified to eat and sleep because no matter what I did my blood glucose levels were still high. My pediatrician eventually intervened and told the endocrinologist that she thought a Type 1 diabetes diagnosis was more appropriate and prescribed insulin. Even when my diagnosis changed, my endocrinologist would not write a prescription for an insulin pump. She called me irresponsible, lazy, and always overweight.
I was relieved to be diagnosed with Type 1 diabetes because it meant that I had an autoimmune disease and it gave me some distance from the stereotype of diabetes I had been fighting. I could finally eat without having to justify every bite. I was able to get fast acting insulin which made me feel a million times better than before. I thought that people would finally stop blaming me for being diabetic. What I discovered is that most people have a very fixed idea of what a Type 1 diabetic looks like and Black and curvy isn’t it.
By 17, I had figured out I could keep my weight down if I didn’t take as much insulin and only ate tiny amounts of food. Even though it felt terrible, it worked. I was praised by my pediatrician, dieticians, and random adults in my life for getting smaller even as I ended up in the E.R. 4 times my last two years of high school for panic attacks.
Unfortunately, this has been my story for most of my 11 years as a diabetic. My treatment has been dictated by stereotypes about Black people and fat people. I have gone to E.R.s experiencing a range of issues and been told that I needed to “take better care of my diabetes” which is code for lose weight and eat less Black people food. I avoided doctors for the better part of my 20s which is dangerous for a Type 1 diabetic who needs access to prescriptions and certain medical devices. I ended up back in a doctor’s office for the first time in years in 2015. I felt like I was dying and had felt that way for over a year. Constant heart racing, nausea, hair falling out, and so tired.
Luckily, I ended up with the sweetest PA and diabetes educator I could have ever asked for. They, as a team, took me under their wing and promised that we would figure out what was going on. The first step was getting my diabetes under control. I was so used to being berated and shamed for my body I literally cried when my CDE told me that she wasn’t there to dictate what I ate or lecture me — she was there to make sure I was taking the right amount of insulin. Within 3 months, my health had drastically improved. So much so, I found out that diabetes wasn’t causing my symptoms. I had large nodules on my thyroid that needed to be removed.
It’s been a few years since I had that surgery, and I’ve really started to work on having a better relationship with my body. A big part of that has been really internalizing that my body was never broken, and I wasn’t the reason I never felt better. I was never given the tools to succeed because my doctors didn’t see me as a person as much as they saw a racial stereotype. I think the only positive to this mess has been learning how to advocate for myself in healthcare settings and walk away when I am not getting the treatment I deserve. I have also been connecting with other people of color with Type 1 diabetes who share some of my experiences and it’s been so reassuring to hear that I am not alone. That’s not to say everything is better — the diabetes community is very thin and white and constantly reinforces that I am not what a Type 1 diabetic or just a “good” diabetic should look like. On bad days, I log onto IG and feel like I am 16 again and nothing I do diabetes-wise will ever be good enough because I am still too Black and still too curvy. Vocalizing these thoughts helps me not to get lost in them. But more importantly talking, usually yelling, about medical discrimination and discrimination within the diabetes communtity forces people in positions of power and privilege to pay attention.
Black diabetics are dying from diabetes complications at twice the rate of non-Hispanic White people. We’re dying because we are cut off from the support systems and access afforded to non-Black folks. We’re dying because people refuse to see us. I refuse to continue to do so quietly.