Facing diabetes stigma in South Africa

Each person has their own story of diabetes stigma in South Africa. Ernest Groenewald shares his journey.

Growing up with a diabetes diagnosis

In South Africa, living with Type 1 diabetes isn’t just a medical journey — it’s a social one.

From the moment I was diagnosed as a child in a government hospital in Pietermaritzburg, I
realised that the real battle wasn’t just with my blood sugar, but with how people looked at
me… or chose not to.

I was barely seven when I ended up in a paediatric ward, surrounded by crying children and
overwhelmed nurses. At first, the doctors thought I had a cold, but after a urine test showed
ketones, everything changed.

Suddenly, I was ‘the diabetic kid.’ A label that stuck with me in every school, every friendship, every room I walked into.

In South Africa, chronic illness in a child is seen as tragic — but also taboo.

The stigma around diabetes is thick, and it cuts deep. Classmates treated me like I had something they could catch. Parents whispered behind my back. My teachers didn’t know what to do with me, and sometimes they’d exclude me from outings “for my own safety.”

Constant explanations

We moved often, and every time, I had to re-explain what diabetes is and why I had to inject
myself. Some people thought I was faking it for attention. Others thought I had ‘the bad diabetes’ — as if there’s a good kind. Most believed that I’d brought it on myself by eating too
much sugar, despite being a skinny child who couldn’t even finish a bottle of water without
feeling sick.

Living in a country where access to healthcare is already unequal,
managing a chronic condition like mine came with its own set of challenges.

My mother wasn’t always able to take off work to fetch me from school when my sugar crashed. There were times we couldn’t afford healthy food, because let’s face it — eating clean in South Africa is expensive.

So we made do with what we had, and I paid the price with my health.

Stigma comes from everywhere, not just strangers

The stigma wasn’t just from strangers. It crept into my home too. My brother sometimes
resented the attention I got. My mother cried when she had to inject me because I was too
scared to do it myself. I felt like a burden. I still do sometimes.

At school, I missed almost 20 days per term due to hospital stays. My marks dropped. I felt
isolated. I became friends with the hospital staff because they were the only consistent
people in my life. When my sugar levels spiralled, I’d be admitted. And then, once out, it was
like hitting reset — until it happened again.

No one around me really understood. In communities like mine, diabetes education is rare, and support is even rarer.

As I got older, the stigma changed shape. During job interviews, I’d hide my condition, afraid I’d be seen as a liability. In relationships, people hesitated to get close when they found out.

Language really does matter

“So you can’t eat cake?” or “Will you die if you don’t have insulin?” became common questions.

I’d smile politely, but inside, I’d ache.

I’ve heard it all:

“You don’t look sick.”

“Maybe if you tried harder.”

“Just lose weight.”

“You’re too young for this.”

But here’s the thing — Type 1 diabetes doesn’t have a look. It doesn’t care about your age, race, or income. And it sure as hell doesn’t come with a user manual, especially not in a country where basic access to insulin and strips isn’t guaranteed for everyone.

Community through advocacy

Today, I choose to speak up. I choose to educate.

I was previously involved with Diabetes South Africa in Port Elizabeth, where I served as camp director for Camp Diabetable. While we’ve only had one camp so far, the impact was real. I’ve also mentored young South Africans who are just starting their journey, helping them feel less alone and more empowered.

Now, I’m part of the global #insulin4all movement through T1International — a network fighting for affordable and accessible insulin worldwide, including right here in South Africa. I look forward to this new venture and the opportunity to amplify the voices of people with diabetes, challenge stigma, and fight for health equity across our country and beyond.

Because I want to live in a South Africa where chronic illness doesn’t mean social exclusion. Where kids like I was aren’t seen as a problem to be managed, but as people to be understood.

In South Africa, the healthcare system is one challenge—but stigma is another. And until we tackle both, the full burden of diabetes will remain invisible.

Inspiring stories of people navigating life with diabetes

Thank you for sharing your story, Ernest!

Would you like to share your story of living with diabetes? We need to start telling all the stories of our community, so that we can reduce the stigma. Please email us if you’d like to share!

Sweet Life is an online diabetes community that empowers people to live healthier, happier lives. We do that through easy-to-understand information about healthy eating, exercise, mental health and the basics of diabetes. Read more inspiring stories and join our community on Facebook and Instagram. Or access the Sweet Life Chatbot on WhatsApp and find answers to your diabetes questions on www.sweetlife.org.za