How to Fight Diabetes Stigma, According to an RD With Type 1

Over the past 18 years, I’ve experienced my fair share of diabetes stigma, defined by the Centers for Disease Control, and Prevention as “negative attitudes, judgment, discrimination, or prejudice against someone because they have diabetes” — and that’s as a white, straight-sized woman who happens to also be a registered dietitian. I say this because diabetes care and societal stigma are worse for both people of color and those in larger bodies, so my tribulations are only a fraction of what others may experience.

Still, as a dietitian with diabetes, I’ve experienced the stigma in all types of ways: While some people have questioned my food choices, others have assumed I eat “perfectly.” There’s no such thing as “perfect eating,” but I’ve definitely felt pressure to eat a certain way (like opting for a salad when I really wanted the fries) and maintain an “acceptable” body size in order to be trusted in my profession.

To work through the internalized pressure I’ve felt (and still do, though less often) because of my diabetes and subsequent career choice, educating myself on fatphobia (and related medical bigotry), diet culture and intuitive eating has been crucial.

I’m sharing the common assumptions people make regarding my own diabetes in an effort shed light on what it’s like to be on the receiving end of the stigma. I’m also sharing some ways to support the people in your life who have diabetes to further move the needle. Hopefully, with a more open dialogue about these issues, we can all become more informed and play a role in ending diabetes stigma.

The assumptions

Assumption #1: I am to blame for my diabetes diagnosis

There are several types of diabetes, including type 1, type 2, LADA, and gestational. Type 1 diabetes, formerly called “juvenile diabetes” as it was often diagnosed in children, occurs when the beta cells in the pancreas — which produce insulin — are attacked and ruined by your immune system.

What I’ve noticed is that people don’t understand the differences between the various forms, so most assume I have type 2. Diabetes stigma originates from misconceptions related to type 2, as this type is assumed to be brought on by poor lifestyle choices.

When you hear about rates of diabetes or read about its causes — specifically those regarding type 2 — there’s often a focus on weight, physical activity, and food choices, even from prominent organizations like the World Health Organization (WHO).

However, other factors like genetics, environment, and age play a role in the development of diabetes as well.

While a series of choices and circumstances may be part of what contributes to a diabetes diagnosis, no one “chooses” to get diabetes. And yet, the stigma around diabetes persists due to the misconception that people with diabetes are ultimately responsible for developing the condition.

I’ve felt stigma from both relatives and strangers over the last 18 years. It always makes me want to share that I in fact have type 1, not type 2, in hopes that they’ll understand I couldn’t have prevented it from happening.  However, as I’ve learned more about diabetes stigma, I’ve realized I’m only perpetuating it when when I correct the assumption that I have type 2.  I’m now choosing to refrain from specifying my specific type of diabetes in an effort to avoid pushing the narrative.

Despite the judgment I feel when people find out I have diabetes, I’m fortunate that being a dietitian makes me equipped to educate and help decrease the stigma.

Assumption #2: A diabetes diagnosis means sweets are off the table

The outdated idea that people with diabetes can’t have sugar persists, and one of the most common assumptions I’ve experienced is people asking if I can have sweet foods like cookies, cupcakes and candy. People have also asked me directly, especially when I was younger, if I was sure I could eat a specific food.

It annoys me when people ask me that because it implies I don’t know how to take care of myself. Plus, research has shown that people with diabetes can eat all foods, including sweets, with proper monitoring. There are ways to prevent high blood sugar when eating high-carb foods, like pairing them with fat- and protein-containing foods. These nutrients slow down digestion, decreasing the risk of blood sugar spikes.

Assumption #3: There’s a “bad” type of diabetes

Each form of diabetes has its own set of challenges, and suggesting one type is worse than the others is judgmental and makes me feel frustrated. I’ve received comments like “Wow, you have to take insulin? Your diabetes must be pretty bad then.” Or, my personal favorite, “Do you have the bad kind of diabetes?”

My typical response to this question is, “I can’t really say if I have the bad kind of diabetes, because all forms are serious and take a lot of work to manage.”

Any time someone’s health is different from your own, my rule of thumb is to avoid commenting on the severity of their condition.

Assumption #4: “Are you sure you should be eating that?”

Living with diabetes means I need to be extra aware of what I eat, from the amount to the type of foods I’m pairing together. Even as a kid, I could run circles around most people when it came to knowing which foods contain carbs, fat and protein, and the estimated amount of carbs my favorite foods had.

Add that to being a dietitian, and it’s demoralizing to have my food choices questioned.

Still, I respond respectfully to people’s questions, usually with something like, “Yes, I’m sure I can eat this. Thanks for the concern, though.” What I hope for future me—and everyone who has faced such stigma—is that we can collectively trust that we are all equipped to make our own food choices.

Assumption #5: I’m the food police and judge what you’re eating

People assume that as a dietitian I’m the food police. Add that to having diabetes, and I must never stray from my diet of whole grains, vegetables, fruit, lean meat, and unsweetened yogurt. In reality, I truly enjoy all foods, from gelato to pizza to broccoli, several times a week.

I don’t worry about what other people eat or what they buy at the grocery store. It’s none of my business, and I’m not judging you.

How to support people who have diabetes

While speaking out as an individual can help fight stigma, there are also steps people who don’t have this disease can take to support those who do.

The International Diabetes Federation states that one in eight adults, or about 783 million people, will have diabetes by 2045. This staggering number illustrates the increased need for support among people with this disease.

Here are a few things to keep in mind in your quest to be more supportive of people with diabetes:

• Withhold judgment: Don’t make comments about someone’s food choices, body size or exercise habits. If you truly want to help someone improve their eating habits or encourage them to move more, ask if they’d like to try a new snack you made. invite them to join you for a walk, or, best of all, how they’d like to be supported.
• Don’t make diabetes the butt of any joke: “This food is diabetes in a bowl!” This rhetoric makes you sound ignorant and lets people with diabetes know you’re likely not someone they could go to for support.
• Lend an ear: Even if you don’t understand the ins and outs of diabetes or how to manage it, being there to listen to the fears, worries, or frustrations of someone living with this disease can do wonders. Just knowing you’ll take time out of your day to support us is a sigh of relief.
• Seek out information from reputable sources to avoid making assumption: There’s plenty of information out there to help you become educated, and help you stop making assumption about diabetes. The American Diabetes Association, Beyond Type 1, Beyond Type 2 and T1D Exchange are all great resources for getting started.

The bottom line

With diabetes cases expected to increase in the coming years, more people than ever will need support from their loved ones and their networks. I encourage you to learn more about diabetes so you can play a positive role in the lives of those around you who are living with this condition.