When we decided to do a second season of the South Africans with Diabetes podcast, the first thing I wanted to do was talk about the awkward stuff… The things we’re all thinking about, but haven’t really brought into the open. One of those things is diabetes stigma. Is it real? Is it worse for people with Type 2 diabetes? What do we do about it, and how do we make it better?
Have you experienced diabetes stigma?
When we asked our community – South Africans with Diabetes – if they had experienced diabetes stigma, the responses came rolling in. It’s actually such a complex issue, because it’s not just one thing, not one kind of stigma, is it? We heard every flavour of stigma you can imagine.
Butterbean told us about doctors being dismissive and rolling their eyes when she shares what her experience of diabetes is. And Type 1s assuming you’re Type 2 out of choice – as if anyone would ever choose diabetes!
Nikita is a parent of a child with Type 1, and she was talking about how they’re judged because they “gave their child diabetes” by not looking after her, and now she’s seen as “damaged goods” or “an unhealthy child”.
Nontombi was telling us how people make fun of diabetes lows that require urgent sugary food – instead of stepping up to help.
Britny was misdiagnosed with Type 2 because she was overweight, so the doctor never did the proper tests.
Isabella was talking about her frustrations with the one-size-fits-all approach to diabetes: that if you don’t fit into a box of specific blood sugar readings, you’re doing it wrong.
Living with Type 2 – and diabetes stigma
I was lucky enough to meet Helga Nefdt earlier this year. She’s a wellness and transitional coach with a special interest in supporting those with comorbidities, and I was so inspired by her story of life with Type 2 diabetes. So I’ve invited her to talk about her diagnosis and how she deals with diabetes stigma.
Could you tell us about your Type 2 diagnosis?
I was initially diagnosed with gestational diabetes and it often develops into Type 2 diabetes, but a lot of people aren’t properly educated about Type 2 diabetes when they’re diagnosed with gestational diabetes. I was one of those classic cases.
Have you personally experienced stigma because of your diabetes?
I experienced stigma through the observations of others. And what I mean by that is I decided a very long time ago not to talk about the fact that I had diabetes. I always felt I would be discriminated against because of the observations I’d made over the years, so my way of avoiding the stigma was not to disclose my diabetes to anybody.
And I hid it for years, and I think a lot of people do hide it. It felt like shame to me. Without anybody saying it, I felt that I was being curtailed and restricted.
How do we move forward from this – what can we do to reduce diabetes stigma?
You know, for me, I think it was about coming out of the closet. The turning point felt like I was hiding from my own life. And I made the decision and the choice to see diabetes in a way that could empower me.
I also wanted to get a Type 1 perspective – that isn’t me! – so I asked local diabetes advocate Thapi Semenya to chat to us.
How long have you been living with Type 1 diabetes?
This year will be 16 years. I was diagnosed a when I was six years old.
You’re a diabetes advocate – what does that mean to you?
It means being the voice of people living with diabetes. I think for me when I started out, it was more about meeting people like me and speaking out about diabetes. I found that not a lot of people were doing it at the time that I was diagnosed and I felt very much alone. So for me diabetes advocacy is advocating for the basic needs of people with diabetes – things like your insulin, your glucometer, CGM etc. And I think anyone who is living with diabetes in South Africa and Africa deserves to have these basics.
How have you experienced stigma?
My whole entire life has been about stigma. Firstly, after I was diagnosed it was the stigma of “diabetes is for older people”. Secondly, it was a diet issue, because people have opinions about what I should eat and not eat. Being asked questions like, “Are you going to eat that?” – even by family members who should know better.
What can we do to minimise diabetes stigma, in your experience?
I think it’s very much an education thing. We need to find new ways to educate and empower people about diabetes.
Would you rather listen to this information?
Here’s an episode of our podcast about it!
About the podcast guests
Helga Nefdt is living with Type 2 diabetes and works as a wellness coach.
She holds a Bachelor of Technology in Human Resources from the Cape Peninsula University of Technology, Diploma in Employment Law and a LLM in Dispute Resolution both from the University of Cape Town. She also has a coaching certification from the Center for Coaching, UCT Business School.
Her approach is empathetic and pragmatic. Of utmost importance to Helga is integrity and trust and providing practical, workable solutions and support to her clients.
Thapi Semenya is a diabetes advocate currently doing her 2nd year as a Law Student.
She is also a mental health and vitiligo advocate. She is part of the Dedoc° Voices, an international network of diabetes advocates.
Thapi is also one of the IDF Youth Leader in Diabetes Trainees for the years 2022-2024.
She is part of the IDF Blue Circle Voices, an international network open to all people with diabetes and their carers, and a Professional Advisor for The Luna Project UK.
What to read next?
The stigma of diabetes: Children with diabetes often experience stigma. Carine Visagie explains how to make life easier for your child.
Is there a stigma around living with diabetes?: Is there a stigma around living with diabetes, do you think? Many people with diabetes feel as though there’s a diabetes stigma.
SMART goals: what they are and why you need them.