Why Is There Still So Much Stigma Around Type 2 Diabetes?

When I was diagnosed with type 2 diabetes in 2009, all I could think was that I had done this to myself. Nothing could have prepared me to be diagnosed with an incurable, progressive disease at the age of 23, let alone one that comes with shame, guilt and societal judgment. But there I was, crying in the nurse’s office at my university clinic, being told that I was now a diabetic. 

I had a robust family history of the condition, so I knew there was always a possibility of being diagnosed. But why so soon? Several doctors told me it was a “lifestyle” disease. As a university student, my lifestyle wasn’t ideal: I drank too much coffee, skipped meals, didn’t sleep enough and drank alcohol every week. But so did my friends—and none of them were diabetic. 

Over the last 15 years, I have been blamed, shamed and even hated myself for having diabetes. And I am not alone. 

Diabetes can happen to anyone who is predisposed to it

Diabetes is largely misunderstood. With different types, treatments and causes, it can be difficult for non-diabetics to contextualize the disease. Online, misinformation abounds, promising cures for an incurable condition. So what exactly is diabetes?

Diabetes is an endocrine disorder that affects insulin, a hormone produced by the pancreas that regulates energy and blood glucose levels. In some cases, the pancreas doesn’t produce enough insulin and in others, the body can’t effectively use the insulin, causing high blood glucose levels known as insulin resistance. 

There are as many as 11 different types of diabetes, but the most common are type 1, type 2 and gestational diabetes. 

Type 1 diabetes is an autoimmune disease in which the body attacks the pancreas, reducing or eliminating insulin production. This type is usually diagnosed in children, though it can be diagnosed later in life, too.

Gestational diabetes can occur during pregnancy when hormonal changes affect either insulin production or insulin resistance (or both). 

Type 2 diabetes is a chronic disease, though it has more varying causes and treatments than other kinds of diabetes. Type 2 diabetes is usually diagnosed in people over 50, but it can occur at any age. While lifestyle can contribute to developing type 2, it isn’t the sole cause.

Different diabetic types determine the causes and treatments needed to manage the disease. Not all diabetics need to take insulin; treatments also include medications (like Metformin or Ozempic) or lifestyle changes through diet and physical activity. 

Stigma surrounding type 2 diabetes can affect self-esteem and access to healthcare

Diabetics are often subjected to misinformation and public shaming. I have witnessed type 1s berated on X for needing insulin to survive, pregnant women chastised for not exercising enough, and people with type 2 diabetes—who get the worst of the abuse—being shamed for not curing themselves with diet and exercise. 

There is a persistent stigma—fuelled by misinformation, fatphobia and colonialism—that suggests type 2s are lazy, eat poorly and can easily cure themselves by working out and losing weight. In reality, type 2 diabetes develops for a multitude of reasons that span genetics, ancestry, socioeconomic and environmental factors.

A quick search on any social media platform illustrates the stigma surrounding type 2 diabetes, and diabetes in general. The words “cure” and “reverse” are used in abundance, with suggestions that simple changes—such as intermittent fasting, keto-focused diets and high-intensity exercise regimes—could rid a person of their type 2 diabetes. These narratives are more than just misinformation; they weaponize the stigma that diabetics cause their disease. 

If these “cures” actually worked, 30 percent of Canadians—11.7 million people—wouldn’t be diabetic or prediabetic. Diabetes Canada receives more than 825,000 calls a year from people looking to connect with physicians and find resources to learn how to manage their disease. Every 24 hours, more than 20 people die from diabetes-related complications and 480 more are diagnosed. Our healthcare system spends approximately $75 million on treatment, according to Diabetes Canada. 

“Stigma prevents people from being healthier. We have to change that,” says Diabetes Canada CEO Laura Syron. “And that change needs to come from all angles: government, healthcare, work and society.”

Managing type 2 diabetes—including expenses like lancets (the tiny needles used to pierce your finger in order to test your blood sugar levels), testing strips, continuous glucose monitors and medications—can cost up to $10,000 a year without insurance. Provincial programs based on income, such as ODSP and Trillium Drug Benefit in Ontario, cover select diabetic medication and supplies. These programs are far from perfect and often cherry-pick what supplies are covered; for instance, my biosynthetic insulin is covered but the needles needed to administer it are not. 

There is potentially more support for diabetics coming from a federal level, as the Liberals and the NDP have reached a deal on pharmacare. The Canada Pharmacare Act will initially cover diabetes medication, which, when implemented, would offer 100 percent coverage without a deductible. 

But cost isn’t the only barrier to treating the disease: Syron says guilt and shame can also delay people from seeking diagnosis and treatment. 

As a type 2 diabetic, Syron has first-hand experience facing these stereotypes. Diagnosed at 50, she didn’t have a family history of diabetes. Like many diabetics, she took that to mean she had done something wrong when she was diagnosed. “You could have knocked me over with a feather, I was so shocked. I wasn’t even sure I was going to tell my husband right away. That’s how embarrassed I was,” Syron says. “I just thought I’d done this to myself. I have failed.”

Had she been diagnosed with any other disease, Syron says she would have been able to picture what life would look like. Instead, Syron was unsure how diabetes might shape her future. Her doctor told her the basics—discussing medication and blood glucose—but Syron felt largely unprepared. That’s why she’s so passionate about helping diabetics connect to the right resources to be empowered and educated about life after diagnosis. 

“If [my doctor] had said those four words—‘It’s not your fault’—it would have been a game-changer for me,” Syron says. “But that didn’t happen.” 

Poor lifestyle doesn’t cause type 2 diabetes, it exposes it

Healthcare providers who frame type 2 diabetes as a lifestyle disease are doing a disservice to their patients, says Dr. Hertzel Gerstein, endocrinologist, a professor at the McMaster Department of Medicine and a committee member of the Canadian Society of Endocrinology and Metabolism. 

“It implies that a person is somehow responsible for causing their diabetes,” Gerstein says. “The most important message that I give to all my patients, and I say it very explicitly, is that if you are diagnosed with any type of diabetes, it’s a disease. You did not cause your diabetes. This is not your fault.”

Numerous factors cause diabetes, Gerstein adds, many of which are still actively being researched. There are more than 600 known genetic mutations—variations in the genetic code—that are related to the disease. He explains that type 2 diabetes occurs as a result of both “the way the body is put together and the environment in which we live.” This can include internal factors like genetics, epigenetics, the gut microbiome and where patients’ bodies store fat. Developing diabetes is also influenced by the natural environment and socioeconomics; for instance, folks with lower income or from areas with no access to fresh fruits and vegetables might not have the time, energy or access to proper nutrition.

“We happen to live in a diabetogenic world—an environment that will expose diabetes if somebody is prone to it,” he says.

Gerstein notes that while obesity contributes to diabetes, it is not the sole reason someone develops the disease. In comparison, he points to cancer: While certain cancers can also be affected by weight, no one—in the medical community or society at large—would dare blame a patient for having cancer. So why is it acceptable to blame diabetics for their disease? “Diabetes should be a no-guilt disease just like cancer,” says Gerstein.

Diabetes isn’t a benign condition. Untreated or uncontrolled diabetes can lead to further medical issues such as kidney damage, blindness, nerve damage, foot ulcers, cognitive decline, dementia, heart disease, stroke, amputation and more. These complications can be avoided, reduced or delayed with proper care.

Type 2 stigma is often rooted in colonialism

Ancestry is also a significant contributor: Indigenous and South Asian populations experience type 2 diabetes at higher rates.

I come from a long line of diabetics who also happen to be Indigenous. But growing up, I never associated one with the other. It wasn’t until interviewing Kathleen LaForme, Traditional Wellness Coordinator at Indigenous Diabetes Health Circle, that I realized the connection between the two is palpable. I can trace a diabetes line weaving its way through my family tree. 

First Nation, Metis and Inuit communities didn’t have diabetes before colonization, which Gerstein and LaForme both note in their interviews. “If you look at our history, diabetes wasn't known as it is until around the late 1940s. Diabetes wasn’t a word in our language,” says LaForme. “We have sweetness in our blood,” she says, referring to The Sweet Bloods of Eeyou Istchee, a documentary looking at diabetes in James Bay Cree First Nation. 

There are many reasons diabetes is so prevalent in Indigenous communities: the outlawing of traditional practices, living in remote areas away from fresh foods or water, lack of access to medications due to income, distrust of Western Medicine and the generational effects from the residential schools and the Indian Act. That’s why, LaForme says, “addressing systemic racism in the healthcare system, combined with traditional medicine and practices, [is essential] to improving diabetes care for Indigenous communities across Turtle Island.” 

Fatphobia also plays a role in diabetic stigma

My First Nation lineage felt like the first strike on my diabetes card. In close second was my weight, which I have struggled with since high school. After my diagnosis, I strived to be a “good diabetic”: I lost a few pounds, took the non-insulin medications they prescribed (and endured their side effects), changed my diet and went to educational sessions on topics such as nutrition and negative outcomes like heart disease and kidney disease. On Saturday nights, when most students were dancing their troubles away at the club, I was in the bathroom doing 2 a.m. finger pricks to check my blood sugar. 

Years later, I dropped 50 lbs in three months and the compliments flooded in from friends, colleagues and on social media. I had never been that thin; I was able to shop at clothing stores, not for plus-size bodies! As the praises—and catcalls—poured freely, it was easy to ignore the signs: the yellow eyes, the weird pain in my abdomen, the sweet-smelling sweat. After 10 years, I had no idea I was headed straight for a diabetic crisis. Our society equates thinness with health, and I fell for the myth. 

In 2020, two weeks after my 35th birthday, I developed diabetic ketoacidosis (DKA), a life-threatening complication that occurs when the body breaks down fat too quickly and ketones flood the blood, causing it to become acidic. As a result of what my doctors called “the perfect storm,” I developed pancreatitis from one diabetes medication—which, in turn, became DKA due to another medication.  

The irony of almost dying from getting thin too quickly was not lost on me. 

After more than a decade of being a “good” diabetic, waking up in the ICU felt like a massive failure. I spent the next 10 days recovering from two nearly fatal conditions and had emergency surgery. The whole ordeal left me with permanent nerve damage and more questions than answers. Now insulin-dependent, I had to learn the complex world of insulin: how to measure, track and inject both long-acting and short-acting insulin products. Insulin felt like I had failed to control my diabetes responsibly. Even though doctors assured me it’s normal for type 2s to progress to insulin when medication is no longer effective, I still felt like I had done something wrong. 

And then it happened: After 12 years as a diabetic, someone finally told me it wasn’t my fault.

Stigma surrounding type 2 diabetes is often rooted in fatphobia and shaped by the warped narratives our society perpetuates around bodies and health. We can’t talk about type 2 diabetes without also talking about fat bodies, seniors and marginalized groups.

“One of the biggest frustrations of living with type 2 diabetes is this persistent idea that I did it to myself,” says Alysse Dalessandro, an author and influencer from Cleveland, Ohio, who works to destigmatize the disease. “Why are we still pushing this narrative even though it's not even based on science?”

Dalessandro acknowledges that talking about type 2 diabetes online requires persistence and a thick skin. “It’s really hard. It’s still hard all these years later,” she says. But Dalessandro braves the trolls, fat shamers and ignorant comments because she knows how harmful the stigma can be. She believes that thriving with type two diabetes is not only possible but it can be done without the hefty side of fatphobia and self-hate that often accompany the diagnosis.

“We constantly have to be our own advocates. Even on the days when I'm not ‘healthy,’ when my diabetes is not well managed and when I have health issues—I'm still worthy of respect and dignity. I’m not going to put my life on hold ever for diabetes,” says Dalessandro. “I’m going to keep living. I’m even more motivated to keep living because I know life can change at any moment. Time is precious.”

Type 2 diabetes can have serious, life-altering complications, but remission is possible

Chronic illnesses can be treated and sometimes diabetes can even go into remission. Gerstein is on the cutting edge of research into the disease, investigating how type 2 diabetics can go into remission. Weight loss, calorie restriction, bariatric surgery and certain medications have shown promise in delaying diabetes or putting it into remission. But those treatments don’t work for every diabetic.  

“Patients shouldn’t feel guilty if [their diabetes] doesn’t go into remission, despite what they do. There’s a lot of variability in whether people respond and how they respond,” says Gerstein. In fact, “10 to 12 percent of diabetics can spontaneously go into remission without any intervention.” 

Diabetes can consume your entire life if you let it. Some days it feels like a full-time job that I can never retire from. I have wasted so much energy hiding in bathrooms to inject insulin and conceal life-saving treatments so I’m not judged. I used to treat my routine bloodwork as a report card, using the results to bully myself into being even more accountable. This hypervigilance didn’t save me and was fuelled by self-hate and stigma. 

Sometimes you can do everything right and it will still go wrong. Now, instead of fighting my diabetes like a disease to be conquered, I treat it as a part of a healthy lifestyle; no different than drinking enough water and getting a proper night’s sleep. Advocates like Dalessandro remind me that we are more than our disease and, no matter the state of diabetes, we are always worthy and intrinsically whole.