Stigma Makes Managing Diabetes Harder

This content originally appeared on diaTribe. Republished with permission.

By Liz Kopco

Molecular biologist Liz Kopco has been living with type 2 diabetes since 2014. Along with advocating for women and girls in STEM, Kopco shares her personal journey with diabetes to help teach people to become their own advocates. 

Growing up surrounded by diabetes – most of my mother’s family lives with type 2 diabetes – I saw firsthand how difficult a life with diabetes could be.

That’s why I’ve always been very health-conscious. I ran half marathons, 5Ks, did intense workouts, and tried to eat as many salads as possible. I was going to be the “exception” to my family’s curse.

I pushed my body with intense cardio workouts. I had to work out or I’d get diabetes. Losing weight was the only way to prevent it. That’s what I was always told. Then I ended up blacking out after a workout and hitting my head on the dining table on the way down.

While checking for a concussion, my doctor ordered some bloodwork, and I was diagnosed with prediabetes. I had to “lose weight and eat healthy” if I wanted a fighting chance. So I worked out even harder. I ate even less. And I somehow still ended up getting diagnosed with type 2 diabetes just a few months later at age 23.

The nutritionist I saw gave me a pamphlet, wished me luck, and that was all the support I got.

I felt like I had failed. I was too young. I didn’t look “diabetic.” I wasn’t lazy. I had actually tried.

Author Liz Kopco

I would go to the bathroom to prick my finger or not check my blood sugar levels at all so people wouldn’t know I had diabetes. I didn’t want to have to explain all over again that I knew I was too young, didn’t look diabetic, and wasn’t lazy.

I didn’t realize I had internalized so much stigma until I was put on insulin four years later. I remember my uncle always telling me to take care of myself so I wouldn’t “get worse and end up on insulin like my family.”

I’m the daughter of Mexican immigrants, and as I mentioned, many family members on my mom’s side have type 2 diabetes. It’s the reason I decided to pursue a career in science – to help find a cure for diabetes.

And here I was, worse, failing yet again. I beat myself up for letting it get “this bad,” unaware that insulin was just like any other medicine and had no moral value.

I almost didn’t take my insulin because of stigma. These misconceptions and negative associations with type 2 diabetes made an already difficult situation even more challenging.

Last year I had my first big surgery; I got my gallbladder removed. I was so nervous and anxious about having surgery, not knowing what to expect. Doctors and nurses kept coming in and out of my room, asking so many questions that I couldn’t remember who was who.

Finally, the anesthesiologist came in – the last doctor before going into surgery. She grabbed my chart and asked what type of diabetes I had. I said, “Type 2.” Without looking at the rest of my medical history, talking to my endocrinologist, or even asking me more questions, she simply said, “Type 2 and on insulin? Wow, you must be really bad.”

That’s the last thing I remember before waking up from surgery. The following two weeks that I should have been focusing on recovering I spent crying. Replaying that moment over and over in my head and beating myself up for not saying something to her. A doctor who should have had better bedside manners. A doctor made several assumptions about me based on one fact: that I took insulin.

I cried out of anger. I cried because although I knew better and that she was perpetuating stigma, I also knew that she probably said things like that to other patients who didn’t know better.

Other patients who thought being on insulin must be bad so they stopped taking it. Other patients who didn’t feel comfortable speaking up to a doctor. Other patients who were maybe already frightened about surgery and also went into it with their hearts pounding and eyes watering.

Gaining a diabetes diagnosis shouldn’t mean losing respect. I’m fortunate to have access to the tools I need to manage my diabetes, including therapy. It’s taken years of therapy to unlearn stigmas and acknowledge my biases – something not everyone has the opportunity to do.

Because of diabetes stigma and stereotypes, my relationship with food has been destroyed. I had the belief that if I didn’t eat, I wouldn’t need as much insulin, and taking less insulin made me a “better diabetic” because society said I shouldn’t need to be on medicine – just use cardio and cinnamon.

I spent years at the gym trying to lose weight to justify that I’m worthy of living. Society and providers take one look at me and blame my condition on my weight and culture.

“It’s all the tortillas and fried food,” they said. But when I only eat lettuce, I somehow still have diabetes.

Thanks to stigma, a diabetes diagnosis means I’m the butt of every joke. It means I can’t eat anything other than a vegetable without having someone make a comment or give me a look.

Every day I have two fights: one against diabetes progression and one against stigma. I have twice the fighting and sometimes half the resources to do so. I can’t fight this on my own.

Diabetes stigma is perpetuated and upheld by society and it’ll take society to end it. Fighting it together is important because it means I can focus on just living with diabetes.

It means that more people will feel comfortable asking their doctors about getting tested and can get diagnosed earlier. Less stigma means more lives saved.

Learn more about diabetes stigma and how to change the narrative here: 

Take the Pledge to End Diabetes Stigma and Discrimination
Diabetes Stigma is Everywhere, But You Can Do Something About It
Diabetes Stigma: Let’s Flip the Script

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