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The stereotypes, misunderstandings, and misconceptions about every type of diabetes can be frustrating and offensive. The result is a societal — and global — stigma associated with any type of diabetes. The stigma and discrimination are especially harsh for those with type 2 diabetes (T2D) because of the lifestyle habits that can play a role in the development or treatment of the disease.
The daily impact on people with T2D can be cruel, with constant shaming and criticism from the media, friends, strangers, and even healthcare professionals.
The End Diabetes Stigma & Discrimination initiative launched this month, asking for your support by simply pledging to end the stigma of diabetes in your own words and actions. Fifty-one experts developed this international campaign from 18 countries, organized by diaTribe and the Australian Centre for Behavioral Research in Diabetes.
As people with type 1 diabetes (T1D), we can help change this — here’s a look at why and how.
First, what is stigma?
Stigma: a mark of disgrace associated with a specific circumstance, quality, or person.
“Stigma most often refers to a set of negative and often unfair beliefs that a society or group of people have about something,” explains Merriam Webster, “for example, people talk about the stigma associated with mental illness or the stigma of poverty.”
Stigmas associated with diabetes include misconceptions like:
- People with diabetes did this to themselves.
- People with diabetes are lazy.
- People with diabetes eat a lot of donuts and other high-calorie foods.
- People with diabetes eat too much sugar.
- People with diabetes don’t exercise.
- People with diabetes don’t eat healthy food.
- People with diabetes don’t try to improve their health.
- People with diabetes don’t pay attention to their health
- People with diabetes who take insulin have it “really bad”.
- People with diabetes who take insulin aren’t trying.
- People with diabetes who take insulin are lazy.
- People with diabetes don’t deserve compassion…because they did this to themselves.
These are harmful and cruel stereotypes. They’re about as accurate as stereotypes associated with blonde hair, yet they are pervasive throughout society and even within groups of people with T1D.
Real science about T2D that might surprise you
The media perpetuates a widespread belief that T2D is caused simply by eating too much, exercising too little, and gaining weight.
In reality, research continues to prove a variety of clear facts about the development of T2D:
- Obesity alone does not cause T2D — many people with obesity never develop T2D
- Obesity-related genes directly affect your body’s risk of developing obesity despite lifestyle habits
- Combinations of specific genes are linked with an increased risk of T2D
- Certain genes associated with obesity actually protect a person’s risk of T2D
- Other genes associated with obesity actually increase a person’s risk of T2D
- There are four combinations of obesity-related genes that increase T2D risk
- There are two combinations of obesity-related genes that decrease T2D risk
- These genes also impact where your body stores fat
- The location of fat storage on the body directly influences T2D risk
- Many people with equal body fat percentages have completely different T2D risks due to gene combinations and fat storage locations
What this really means is that we, as a society, should stop shaming, blaming, and criticizing people with T2D. The genetics of obesity and T2D are legitimate and play a significant role in developing these conditions.
The next time you hear someone make jokes about someone causing their T2D by eating too many donuts, you can explain these relatively straightforward facts. Be part of the change by spreading accurate information. Speak up.
Put yourself in their shoes
When Liz Kopco, PhD, was diagnosed with T2D at 23 years old, she wasn’t exactly shocked, because eight of her family members were already managing the disease. While science continues to demonstrate the significant role of genetics in the development of T2D, Kopco knows firsthand how shocking and hurtful the stereotypes and assumptions can be.
“One of the most hurtful moments I’ve ever faced was during the preparation for my gall bladder removal surgery,” recalls Kopco, who earned a bachelor’s in health science from Aurora University and a Ph.D. in cellular and molecular biology from North Dakota State University.
“The anesthesiologist came in to review my records, and she noticed it said, ‘diabetes’ in my chart,” explains Kopco. “She asked what type I have, and I said, ‘type 2’. She immediately said, ‘Ohh, type 2 on insulin? That must be really bad’.”
Kopco was so caught off guard by the ignorant and thoughtless comment that she wasn’t able to stand up for herself before the anesthesiologist quickly left the room. But she shouldn’t have to stand up for herself to harmful comments from healthcare professionals while prepping for surgery.
“There I was, even more stressed about going into surgery feeling so much shame and anger,” says Kopco, adding that the heaviness of how she was treated affected her positivity throughout her recovery.
Today, Kopco is a passionate advocate in the T2D community and a voice for the patient experience as a woman of color. Her Latina heritage further highlights the research on the genetics of T2D that increase a person’s risk.
On a nearly daily basis, Kopco points to the constant barrage of jokes in movies and TV, headlines in the news, and comments throughout social media that feed and fuel the idea that people with T2D are not worthy of support or respect.
That constant feed of negativity and criticism can also feed “internalized stigma” which is when you start believing falsehoods about yourself. Internalized stigma can be simple, like, “Well, I must be lazy since I have diabetes,” explains Kopco, who exercises regularly, walks her dog, and is dedicated to mindful nutrition and diabetes education.
It can also cause someone to stop taking their insulin altogether if their healthcare team or society has led them to believe that they are “bad” for needing insulin and that taking it is a bad thing.
That stigma could also lead someone to deny or limit diabetes management in public or with friends and family. They could avoid doctor appointments if those appointments are filled with criticism and feelings of shame instead of empowerment and support.
The potential impact of diabetes stigma is endless. And it can hurt people both emotionally and physically.
We cannot make assumptions
Many people living with T2D and obesity are active, eat healthy diets, and will continue to experience insulin resistance and obesity.
Many people living with T2D and obesity go to the gym, eat vegetables, avoid or limit their sugar intake, go on daily walks, and are passionate about their daily health management.
Many people living with T2D have lost significant weight and still need to take insulin or other diabetes medications.
Many people living with T2D could have healthier lifestyle habits than those with less body fat, but their genetics have made them significantly more likely to gain weight and develop certain health conditions.
All people living with T2D and obesity are human beings with feelings, strengths, and weaknesses just like you. These people deserve our compassion, support, and respect.
You can help change how we all treat people with diabetes
The End Diabetes Stigma & Discrimination is asking you to simply sign then pledge in exchange for a few simple promises:
- respecting people with all types of diabetes
- recognizing diabetes stigma exists and has harmful impacts
- acknowledging and challenging my/our own prejudices about (people with) diabetes
- using accurate, respectful, inclusive, non-judgmental, and strengths-based language, messaging, and imagery when communicating with or about people with diabetes
- avoiding and challenging fear-based messaging and imagery
- condemning discrimination due to diabetes and advocating for equal treatment and support for people with diabetes
- encouraging initiatives, policies, and laws that promote equity for all people with diabetes
“By taking this pledge,” explains the initiative, “I am committed, from here on, to creating a more compassionate and respectful world for people with diabetes, free from diabetes stigma and discrimination, and the harms they inflict.”
T1D Exchange has signed and taken this pledge. Now, we’re asking you — readers and community members — to do the same.
Ginger Vieira
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Stigma & Shame: Why People with Type 2 Diabetes Need Our Support Cancel reply
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I just signed the pledge!
My first pledge activity was to request a DNA company remove their judgmental language regarding A1c levels. I gave them lots of reasons why their language was dangerous and incorrect. And, I also asked them to change the way they did the graph (if they continue to use it.) I explained the Green = Good and Red = Bad visual was a shaming and blaming message. When they labelled my hard-fought for A1c of 6.5 as “undesirable”, I had a cow and added kittens to the mix. i.e. I was not happy.
I asked them to change it to a nice teal gradient (lighter teal for lower A1cs and darker for higher A1cs) with one vertical marker for “Low end of non-diabetes” and one vertical marker for “high end of non-diabetes”.
I hope that was a good and respectful decision!!
I have fought previously for health language equity, but, being that the company are not supposed to be doctors, I hope they will listen.
I support all people with diabetes! 🙂
Karen! THANK YOU for supporting this and for supporting people with all types of diabetes. What you’re working on is going above and beyond. I hope they hear you and change your wording.
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