Stop the Stigma: Using Insulin is Not a Failure
Editor’s Note: People who take insulin require consistently affordable and predictable sources of insulin at all times. If you or a loved one are struggling to afford or access insulin, visit GetInsulin.org.
People with type 2 diabetes are often stigmatized and stereotyped, creating healthcare barriers. One of those barriers for the type 2 community is the stigma surrounding insulin use.
There is a misconception that using insulin is the last resort for people with type 2 diabetes or that if insulin is needed, it’s your fault. These stigmas are harmful. They create fears for people living with type 2 diabetes, which stop too many people from getting the treatment they need to not only survive but thrive with diabetes.
BT2 content manager, Liz Kopco, shares her experience and explains why it’s important to address and dismantle these stigmas in this interview.
This interview has been edited for length and clarity.
My diagnosis was an accident
I have been living with type 2 diabetes since 2014. I’ve always loved working out, but one day I worked out so hard that I passed out and hit my head on the dining room table. I went to the doctor to make sure I didn’t have a concussion. When running blood work, they realized that I was pre-diabetic. I was put on metformin immediately and instructed to make lifestyle changes.
I met with a diabetes educator and she showed me how to inject insulin. I was confused because I thought I didn’t need insulin since I was “pre-diabetic,” but she said I had “full blown type 2 diabetes.” Hearing that was shocking—I burst into tears.
No one told me before that, that I had progressed to type 2 diabetes.
Insulin wasn’t for me
I grew up seeing my mom inject insulin before meals, so I knew what diabetes management looked like and how it could vary. However, I didn’t realize that I had a lot of misconceptions about diabetes management until I was diagnosed.
I always thought that using insulin for type 2 diabetes was a last resort, that it was something you had to do once your condition progressed to a certain point.
The reality of insulin use sunk in… eventually
Before my diagnosis, I thought: Everyone with type 2 diabetes gets on insulin therapy at some point because the disease gets worse whether you work at it or not. Being on insulin therapy means you failed. Although you try exercising and eating healthier, nothing works and you end up having to be on insulin!
After I was diagnosed and put on different medications, I was relieved to learn this wasn’t true. Not everyone uses insulin therapy for type 2 diabetes, but it is a tool that everyone should have as a diabetes management option.
How I started using insulin
After years of taking oral medications, my A1C wasn’t getting lower, so my endocrinologist recommended I start insulin therapy. My heart sank.
I felt so defeated because I had this misconception that being on insulin meant I failed. I didn’t want to be stereotyped as a lazy or unsuccessful person or as someone who doesn’t take their health seriously. Unfortunately, I had many of the same biases about myself at the time that I heard from society.
I tried everything to avoid having to use insulin at first. I worked out, ran half-marathons, ate healthy, tried to be a vegan and vegetarian and explored every fad diet you can probably think of. But my A1C wouldn’t budge.
Eventually, I started to think differently about insulin use and my body. To accept that I had to now use insulin to manage my diabetes, I changed my mindset around what using it meant.
I asked myself: What does being on insulin actually mean? I thought of my body as a car. You don’t shame a car for needing an oil change. You don’t shame a car when it breaks down and needs a new part. But we do that to our bodies because there’s a lot of emotion involved with diabetes management. It’s a very personal disease.
On and off insulin
Once I started using insulin routinely, I avoided high blood sugar peaks, improved my A1C and time in range, and my energy levels went up. Who would’ve thought that giving my body what it needed would help me feel better physically and be healthier?
Being on insulin made me feel better, but I remained determined to get off of medication and manage my diabetes through lifestyle changes alone.
The absolute hardest thing about living with diabetes is finding what works for you. It’s all about trial and error. I found a blend of medications that helped me feel better so I could exercise and eat what I wanted. A year later, I was taken off of insulin because my numbers looked great.
I was so proud that I was able to get off of insulin, and I kept all of my other medications and lifestyle the same. But over time I noticed my numbers start creeping back up a little. For me, stress really impacts my blood glucose levels.
By the end of 2020, I knew I needed more help again. Because of new stressors and lifestyle changes I was facing along with the rest of the world, I asked to be put back on insulin because I knew my quality of life would improve.
“Type 2 and insulin? Wow, must be really bad!”
For the most part, I knew about stigmas and misconceptions surrounding diabetes through personal experiences, but I was never personally attacked until I had my first surgery.
I was laying in a hospital bed as many doctors around me prepped. They came in and out of my room to explain the procedure. When one of the anesthesiologists came in, she said, “Oh, I see you’re on insulin. What type of diabetes do you have?” I told her type 2, and I’ll never be able to forget hearing her say, “Type 2 and insulin? Wow, must be really bad!”
I was already nervous about the surgery, and I can’t begin to explain the layer of terror she added to my experience by shaming me right before they put me to sleep for the procedure.
For me, this experience highlighted the importance of language—whether you live with diabetes or not, it’s critical to be aware and remember that how you speak to people matters. (Manners also matter!)
People with type 2 diabetes need support from people with type 1 diabetes, their doctors, and the general public. We don’t talk about that enough, or the many stigmas we face.
Nobody shames someone with a broken arm for needing a cast. Nobody shames a cancer patient for needing chemotherapy. Nobody—including ourselves—should shame people with type 2 diabetes for needing insulin.
Educational content related to diabetes management platforms for type 2 diabetes is made possible with support from Lilly Diabetes, an active partner of Beyond Type 2 at the time of publication.