Diabetes stigma

Why does diabetes stigma matter? Because it’s stopping people with diabetes – you and me and all those you know who haven’t told you they have diabetes – from living healthy, happy lives.

What is diabetes stigma?

We asked Type 1 psychologist Daniel Sher to define diabetes stigma for us.

“Technically, diabetes stigma is described as negative social judgments or stereotypes associated with living with diabetes. This can include blame, shame, or assumptions about lifestyle. It’s also strongly linked to poorer psychological wellbeing and reduced self-management.”

Daniel Sher, psychologist

What does that mean? Feeling diabetes stigma has a bad effect on your mental health, and leads to trickier management of your diabetes.

Lufuno Ndou, who has lived with diabetes for 10 years, knows exactly what that’s like after trying out a CGM while at a wedding as a bridesmaid. “The morning after the celebration we were having breakfast and my levels were rising. Upon eating, I noticed 2 people had seen my CGM and 2 had not. Then I started over-thinking and over-analysing and ended up not taking my insulin until I got in my car (an hour later)!”

In considering what could have helped in the situation, Lufuno shares that knowing that there was no stigma or judgement would have helped, however “the possibility of just one person judging took me off the trail”.

Different kinds of diabetes stigma

We’ve written about diabetes stigma quite a lot, before. About the stigma of diabetes in teenagers and kids, the different kinds of diabetes stigma if you’re living with Type 1 and Type 2 diabetes, and the difference between internal and external stigma, as well as stigma around weight.

Stigma can sound different depending on the situation. Jenevieve Erasmus, living with diabetes, shared how she was told at her workplace, “maybe if you ate less and better you would not have to go to hospital or get this sick!” She was also asked not to inject in front of her colleagues as it was “nauseating”.

“Internalised stigma is the process of absorbing negative societal beliefs and turning them inward (internalising). In teenagers, this often manifests as the belief that being different equals being deficient (or less than), which can really damage self-esteem. Research shows this internalisation contributes to diabetes burnout and unstable blood glucose levels.”

Daniel Sher, psychologist with diabetes

Absorbing these beliefs can be so easy, especially when they are also held at home. Even short sentences like, “don’t make a low sugar such a major issue,” can have a lasting impact on your mindset towards managing your diabetes.

Jenevieve says that she was once even asked at her workplace not to mention that she has diabetes. “They said that companies are very two minded about employing ill staff. It has been a battle ever since, finding work got worse and I’ve never really recovered emotionally. I have such bad anxiety and depression knowing that my illness is now the reason I cannot find work. I wonder will I ever be able to work a normal job again because ultimately I feel too sick to work a full time job.”

How to end diabetes stigma

So what do we do about diabetes stigma, how do we start making a difference? Here are some ideas from the diabetes community, both locally and internationally.

Ahmed White Phiri, living with diabetes for 10 years, shares that he is concerned about the ignorance regarding diabetes and that harmful language stems from a lack of knowledge about diabetes. He says that he is also “a little hurt about the ignorance regarding diabetes”.

That’s what our #DiabetesLooksLikeMe campaign is all about. Please join us on Facebook and Instagram during the month of May to share your stories of diabetes stigma and take part in our epic 14th May #DiabetesLooksLikeMe selfie campaign!

What does diabetes stigma mean to you?

“Diabetes stigma means how you are judged for having diabetes,” says Vanessa Nicholls, who has been living with diabetes since she was 9 years old (she is now 54).

Ernest Groenewald agrees. “For me, diabetes stigma is feeling like I constantly have to explain or defend my condition – like I’m “too much” or “too difficult” to accommodate. It’s being judged for injecting insulin or testing my sugar in public. It’s people assuming I did something to cause this, or that I’m not taking care of myself if my sugar levels aren’t perfect.”

That kind of thinking isolates you. It makes you feel less human, like your condition defines you before people even get to know who you are.

Ernest Groenewald

“Diabetes stigma is the weight of assumptions, indirect judgments, and unsolicited advice that people living with diabetes constantly have to navigate,” adds Sane Mazibuko. “It shows up in those seemingly harmless questions like, ‘Do you have the good or bad kind?’ or ‘Are you allowed to eat that?’

For me, it has led to years of silence and self-judgment. Instead of opening up when I was struggling, especially when I was younger, I shrank.”

I hid the hard days and masked the burnout, because I didn’t feel safe enough to be honest. That’s the cost of stigma: it doesn’t just live in the world, it starts living in you.

Sane Mazibuko

“There are so many stigmas about our uneducated condition,” adds Lecritia Roberts, “but we need to stand together and educate as many as we can.”

What do you wish people knew about diabetes?

“I wish people knew that they can live a long life by living well and taking their meds. Stop saying cayenne pepper is going to take their diabetes away when it’s not going to do anything like that,” says Lecritia.

“I wish people understood that managing diabetes it is a full-time job – 24/7, no breaks – and it takes a huge toll, physically and emotionally. I also wish people knew how strong you have to be to live with it. We make it look manageable because we have no choice – but it’s not easy,” adds Ernest.

“Every day comes with questions,” explains Sane. “It’s relentless;  and we do it all while still working, parenting, showing up, living. We don’t get to switch it off.”

That’s what I wish people knew — that we’re doing the most, every single day, just to stay stable. And sometimes, that’s still not enough. And that’s okay, too.

Sane Mazibuko

One thing that isn’t often highlighted enough is that there is no such thing as perfect diabetes. “Blood glucose instability is inherent to diabetes and not a sign of personal failure,” explains Daniel. “Holding ourselves to an impossible standard of ‘perfect’ control can worsen diabetes distress and even lead to depression.”

Vanessa agrees. “I wish people would know that although diabetes takes 24/7 management, it is manageable and you can lead a normal life despite having diabetes.”

What’s the hardest part about living with diabetes, for you?

“The hardest part about having diabetes for me is when you’re sick and having to manage your spiking blood sugars,” says Vanessa, “even after 45 years of diabetes!”

“At first the hardest part was doing my insulin and how I was going to manage it. Right now it’s me trying to flex my diabetes while being a mom of a very active toddler and dealing with postpartum depression,” explains Lecritia.

“The hardest part for me is the isolation and constant pressure to seem ‘okay’,” says Ernest. “And then there’s the unpredictability – one moment you’re fine, the next your sugar crashes or spikes, and suddenly everything stops. That part never gets easier.”

Growing up, I missed out on so much because people were afraid of my condition. I felt like a burden. Even now, there’s still this fear of being seen as weak, or unreliable, especially in work or social spaces.

Ernest Groenewald

“For me, it’s the overthinking – the constant ‘what ifs’ that loop in my head, especially during tougher seasons,” explains Sane. “I’ve had to unlearn the idea that I have to be the ‘perfect diabetic.’ I’ve had to teach myself that it’s okay not to be okay, that struggling isn’t the same as failing. The hardest part is giving myself permission to be human in a world that often demands perfection — or worse, invisibility.

Living with diabetes is hard. Talking about it shouldn’t be. But it is – and that’s what I’m trying to change, one conversation at a time.”

Sane Mazibuko

The power of bringing diabetes stigma into the open

One of the most important things we want to do with #DiabetesLooksLikeMe is bring conversations about diabetes stigma into the open.

Jenevieve says, “If I had a chance to remove my diabetes I wouldn’t take it because that’s who I am. It’s in my DNA. But a lot of these situations make me question my entire existence.”

By sharing how we feel about living with diabetes, we can normalise these conversations and help those without diabetes understand our lived experience.

“Sharing personal stories helps to actively dismantle stigma. Narrative sharing builds connection, challenges harmful stereotypes, and validates the emotional reality of people living with diabetes.”

Daniel Sher, psychologist

Would you like to share your story? You can comment on this article, email us or post it on Facebook or Instagram.

If you need support dealing with diabetes stigma, there are WhatsApp support groups in each city in South Africa: you can find the links to join here. You can also reach out to a counselor or psychologist if you feel you need one-on-one help.

You’re not alone in this!