What I wish I’d known about diabetes and stigma

What does diabetes stigma look like in real life? We ask Sane Mazibuko to share the battles of stigma.

Twenty-nine years into this journey, I’ve been reflecting on how much I’ve carried, absorbed, pushed away, or outright ignored — things that, now that I look back, were never okay to begin with.

Facing stigma: living whole with diabetes

For so long, I tried to make peace with other people’s discomfort. I accepted the stares. I hid my insulin shots like they were shameful. I answered invasive questions with a polite smile and silenced my own frustration, because I thought that’s what we were supposed to do. Be agreeable. Be strong. Be perfect.

But here’s the truth:

People living with diabetes are people first.

Not projects. Not walking glucose readings. Not HbA1Cs. Not nutrition plans. Just people — deserving of joy, spice, softness, and choice.

Someone once told me that living with diabetes is a lot.
The least we can do is make sure we’re not compromising our quality of life.

“Are you allowed to eat that?”

Younger me had a rehearsed answer to that question. Trained and conditioned to smile politely. To explain. To justify.

But younger me was also misinformed.

Now that I’m older and choosing to live fully, I realize the only thing we’re truly “not allowed” to eat is poison. We can eat almost anything — we just need to be mindful, not deprived.

Just a few months ago, someone slid into my inbox — newly diagnosed, scared, and unsure. She asked, “Are we allowed to eat this and that? Because the clinic gave me a list of do’s and don’ts.”

I sat with that question for a while. It triggered something deep. It reminded me of little me — the one who never questioned the rules, even when they felt suffocated and fear-filled.

Growing up in KZN:

In KZN, when you say, “I’m diabetic,” the first response is often: “Weh, udla umxhabhiso” — boiled, bland, unseasoned food.

And for men, it’s the loaded “ayivuki?” — a question about sexual function.

This narrative haunted me everywhere: home, school, weddings, clinics, even early workplaces. It reduced a whole experience to: no sugar, no flavour, no fun.

Durban curry? Forget it. Just umxhabhiso.
Yes, my parents even cooked a separate pot for me in the beginning — until we all got a little wiser.

And if you dared to eat differently? The judgment was immediate.
So I learned to shrink my cravings — and, in secret, I indulged. Not recklessly, but rebelliously. (If it means anything, I drew the line at fudge. Thirty-something-year-old me still hasn’t had fudge.)

High school and varsity: quiet stigma battles

Externally, life got a bit kinder. I was mostly left alone. But internally, I carried on non-stop conversations with myself.

I was one of two girls in my high school living with diabetes. And it felt like the world — my parents, doctors, teachers — expected me to be the ‘perfect diabetic. (There is no such thing as a perfect diabetic.)

I took just enough insulin to survive, smiled through doctor’s visits with ‘cooked’ numbers in my logbook, and showed up even when I wasn’t okay. No one understood. No one asked. And I didn’t know diabetes burnout was even a thing.

I just thought I was failing — being lazy, not trying hard enough. Today I know better: 
we all go through it.

Work life and the unspoken stigma

Then came the working world. The discrimination wasn’t loud — it was quiet. But heavy.

Do I speak up when I need a break because my sugar dropped? Do I admit that I’m exhausted — not from the job, but from keeping it all together?

Funny story: I started my first permanent job on 1st September 2012. I hadn’t told anyone I was diabetic. But diabetes introduced itself first — I landed in hospital that very weekend. My parents had to inform my new employer on my behalf. I begged to be discharged in time for my first day. My first manager somewhat mothered me. Every sneeze or cough got a concerned look.

By my second job in Cape Town, I chose silence again — until I had to engage with an employee who wasn’t performing and cited diabetes as the reason. That was a turning point.

I told him, “I’ve lived with diabetes for more than 10 years. I’m managing — how can I help you manage better?” From there, word spread. Colleagues with diabetes began dropping by my office. Some curious. Some seeking help. And occasionally: “But you don’t look diabetic.” Thanks, I guess? (Shrug.)

It felt like there was no space to just be.
No room to not educate.
To not explain.
To not smile and nod when someone said, “At least it’s not cancer.”
(Yes, someone really said that.)

Stigma, hate, and digital cruelty

As I’ve grown older, the stigma hasn’t vanished — it’s just evolved. It now comes with a side of hate and a lot of online misinformation.

Not so long ago, someone I had a disagreement with online called me a “psychotic diabetic.”
That was their insult of choice. Not based on my character. Not my argument. Just my condition.

It stung: not because it was true, but because it revealed how quick people are to weaponize diabetes when they have nothing else to say. That’s the danger of a misinformed world. The loneliness. The shame. The unnecessary battles we’re constantly dragged into — just for existing in our bodies.

The message that broke me open

That message from the newly diagnosed woman cracked something open inside me.

It reminded me that we still have so much work to do — in clinics, homes, schools, and boardrooms. But also in our own hearts.

We are not defined by our glucose readings.
We are not our ‘good days’ or our burnout days.
We are not how well we ‘manage’ or how politely we explain ourselves.

We are human first.
We deserve flavour.
We deserve compassion.
We deserve to exist without shame.

To Younger Me:

You were never meant to be perfect. Just whole.

And to anyone reading this — especially if you’re newly diagnosed:
I see you. I see your fear. Your overwhelm. Your confusion.
You are allowed to question.
You are allowed to eat.
You are allowed to not have it all figured out.

You are more than your diagnosis.

You are worthy of care, softness, and love — just as you are.

If you take nothing else from this:

We are more than our highs and lows.
Diabetes in a misinformed world is lonely — but community is everything.
Lean on it.
You are stronger than you know.
And I am sorry that living with diabetes has forced you into so many unnecessary fights — internally and otherwise.

Keep going.

You are doing more than most people could imagine.
You are manually managing what other bodies handle without a second thought.

Inspiring stories of people navigating life with diabetes

Thank you for sharing your story, Sane!

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