Diabetes Stigma, Intentional Ignorance or Lack of Education?

July 26, 2023

Tori Bain
Tori is a junior at East Carolina University majoring in Atmospheric Science. She diagnosed herself with Type One Diabetes her senior year of high school at age 17. Tori has been an active member within the diabetes community since diagnosis, in person and online. She participates in The Diabetes Link chapter at her university and is a content creator for both the diabetes link and her own TikTok.

Diabetes stigma is defined as negative attitudes, judgment, discrimination, or prejudice against someone because they live with diabetes. (source: CDC)  The Diabetes Link recognizes that each person living with diabetes has a unique experience and perspective. This article is the first in a series about diabetes stigma; through this series we aim to lift the voices of young adults.  If you are a young adult interested in sharing your personal experiences regarding diabetes stigma, contact Andrea Skinner.

As a type one diabetic, I wear a continuous glucose monitor (CGM). I tend to wear my CGM on my arm or thigh, somewhere others can visibly see it. I know it’s bound to attract stares, and on several occasions, many questions. I have no problem with the questions! It’s my opportunity to teach people about diabetes!

 I often get asked if I have “the bad diabetes.” or “diabetes where the blood sugar is high”. Diabetes stigma stems from the idea that poor choices and unhealthy behaviors cause diabetes. This belief oversimplifies a complex biological condition and overlooks key factors such as genetics or a person’s environment and socioeconomic context. As a result, people with diabetes experience misplaced judgment and blame. (Yan, 2021)

Ok, back to my story when I get asked if I have the “bad diabetes” or the “one where the blood sugar is high.” 

I  explain that there isn’t a good or bad kind of diabetes, and that all diabetes sucks. That both (or even all) types of diabetes is an issue of  high blood sugar. It’s  the approach to how the body responds that makes these types different. 

  1. While I love to educate about diabetes and answer questions, the kinds of questions I encounter make me wonder several things. Does this person really know what diabetes is? Do they know that there are several two types of diabetes? 
  2. Do they think I ate terribly for seventeen years and diabetes is the result?  I was “thankful” that I was old enough to read my body and figure out what was going on. 
  3. Is diabetes stigma perpetuated on purpose, or simply because of a lack of education? As a senior in high school when I was diagnosed, it was a culture shock both to myself and my peers. I started my tiktok page shortly after diagnosis, educating and advocating for diabetes. 

Let’s dive into some real life scenarios to discuss. 

While at a college organization fair, I was handing out Kool Aid Jammers with my college’s Diabetes Link chapter.  A gentleman walked up, read the Diabetes Link on our poster and immediately the vibes changed. He just stood there, in that “ I don’t know what to do” position. I said hello and asked how he was doing. He just stared back. I offered him a Kool Aid jammer or some candy we had out on the table. He looked confused and made a comment along the lines of “I don’t want anything that doesn’t have sugar in it”. I was so taken back that I laughed. I reassured him that it did have sugar, and he looked even more confused, but did take a jammer and walked off. The man didn’t have to say anything, I knew why he was concerned about the lack of sugar. He saw Diabetes, and assumed we were on the sugar free diet. He isn’t the first to assume that.  Many few realize how damaging lack of diabetes education  affects the safety of diabetics. Candy and Kool Aid jammers often save my life in the middle of the night or out on the go. If I am around friends not familiar with diabetes and I go low, more often than not it becomes a teaching moment. Several times I have had friends offer to get my insulin pen to help with my lows. 

Evvy, my best friend and a fellow diabetic, and I table for our chapter at our campus’ student center. We always hand out some sort of sugar, like jammers or candy. People will walk up for the free candy, chat with us and head out. We always get a handful of people who will see the candy, see the Diabetes Link sign and say “Isn’t it ironic that diabetics are handing out candy?”. The first time it happened, I was surprised, like did they really ask me that?. As it happened more and more, I began to realize that others associated the word diabetes with a sugar filled childhood, obesity, and  low carb/low sugar diet. I will admit, prior to being diagnosed, I didn’t know much about diabetes. I knew type two diabetes existed, but I didn’t truly understand what it meant or required. This is why it’s important to advocate and educate the public.  Film and media play a large role in the way that some people gain knowledge, whether or not it is factually accurate. If film and media portrayed diabetes correctly, (I could write an entire piece on the portrayal of diabetics in movies) more of the general population could have a better understanding of diabetes. 

All of this to say,  I don’t think the population is spreading misinformation on purpose, yet willing to do little to no research. If research is being done, correct portrayal in film and media, and others continue to educate and advocate , the stigma of diabetes can be eradicated. 

While diabetes education is essential for individuals diagnosed with diabetes, it is also relevant to non-diabetics. Diabetes education is important for prevention, awareness, and empowerment. Diabetes education can raise awareness about the impact of diabetes on individuals, families, and communities. It can help non-diabetics understand the challenges faced by individuals with diabetes, such as managing blood sugar levels, coping with complications, and accessing healthcare services. This knowledge can foster empathy and support for individuals with diabetes and encourage non-diabetics to advocate for policies and resources that support diabetes prevention and management.

Contact Andrea to share your personal experience. For resources about living with diabetes, visit our Resource Hub. Looking for a peer support community? Join our Discord

Thank you Lilly Diabetes for sponsoring this blog post.

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