In this monthly series, Sweet Life co-founder Bridget McNulty talks about something personal related to diabetes… This month she’s tackling the difference between Type 1 and Type 2 diabetes.
In December 2022, I was lucky enough to go to the IDF Congress in Lisbon. I spent 3 days listening to people talk about their experiences with diabetes from all over the world, meeting fellow diabetes advocates and learning from scientific sessions. It was an extraordinary experience, and I have so many ideas that I want to share with you all!
I also want us to be able to talk about the more difficult aspects of living with diabetes… The things that maybe don’t have a clear answer but that we should be questioning anyway. One of those things is the difference between Type 1 and Type 2 diabetes.
Do we need to highlight the difference?
Our approach with Sweet Life Diabetes Community has been that we’re all in this together. It doesn’t matter if you have Type 1 or Type 2 or gestational or LADA or MODY or if you’re the carer of someone with diabetes or you work with people with diabetes or you just have an interest in it. We are South Africans with Diabetes.
I still believe that. But I think there are added nuances that we need to be aware of – and a lot more we can do to level the experience that everyone is having, and ensure that everyone feels welcomed and nobody feels judged.
“I’ve been living with diabetes for 15 years.”
In one of the sessions about diabetes stigma I attended, Cherise Shockley spoke about life with Type 2 diabetes – online and offline – and how there’s an underlying stigma attached to the condition that often isn’t even spoken about. She suggested one simple change we could all make that would have a big impact. Instead of saying “I’ve been living with Type 1 / Type 2 diabetes for the last xx years,” why not just say, “I’ve been living with diabetes for xx years”?
“Because no one cares about the type of diabetes we have.
Cherise Shockley
But how we choose to speak, act, and react matters.”
It might seem too subtle to make a difference, but think about what’s happening when we introduce ourselves as a certain type of person with diabetes – we’re immediately differentiating ourselves from another type. This predominantly happens with Type 1, because there is so much less blame given to a Type 1 diagnosis. The message on diagnosis isn’t, “This is your fault, you did this to yourself,” as it so often is with Type 2 (even though that is entirely unfair and doesn’t take hereditary predisposition into account at all). Type 1 is an autoimmune condition, and by setting ourselves apart as those with an autoimmune condition, we are subtly stigmatizing those without.
I feel really strongly about this, and will be introducing myself as living with diabetes from now on. If people feel the need to ask which type, that opens up the door to an interesting conversation about the difference between the types and the stigma that is often attached to Type 2.
Different messaging from diagnosis
This was highlighted by Mila Clarke, who was misdiagnosed as a Type 2 (because she is African American and in a bigger body, and so the doctors didn’t think to do all the necessary tests) before being diagnosed as LADA (a form of Type 1 diabetes).
The difference in diagnosis, she told us, was startling. The Type 2 diagnosis was delivered wrapped in blame and shame – a mentality of “you did this to yourself.” The Type 1 diagnosis, on the other hand, felt like being welcomed into a club. She was encouraged to embrace it, and not let it stop her from living her best life.
“Having diabetes isn’t a bad thing. It’s not a moral failure. It’s not laziness. There’s a strength in knowing you have a progressive disease, and you choose to take pride in it, and not shame.”
Mila Clarke
What can we, as South Africans with Diabetes, do about this?
I have some ideas but I don’t know the answers. And that’s the point, right? No one person should know the answers – but we should be talking about it. I would love to hear from you – either in the comments, below this article, or on our Facebook and Instagram posts about this. I have all kinds of questions:
- Is it important for Type 1s and Type 2s to differentiate themselves?
- How do you introduce yourself?
- Do you feel there’s a specific stigma to Type 2, or to Type 1?
- Do you feel welcomed in our community?
- Is there anything we can do to make you feel more welcome?
Let’s talk about the differences – and the similarities
I’ll be writing about one of these questions every month and would love to know if you have any suggestions… I’d love to know if you have any suggestions at all, in fact – for our blog, our Facebook and Instagram pages, and our non-profit work.
Sweet Life is for all South Africans with Diabetes – and that includes you.
What to read next?
What is diabetes? The ultimate guide to understanding diabetes: So you’ve just been diagnosed with diabetes and want to know how diabetes works in the body?
Diabetes misconceptions: Rencia Phillip wanted to clear up some diabetes misconceptions.
Is there a stigma around living with diabetes?: Many people with diabetes feel as though there’s a diabetes stigma. The additional stress of feeling stigmatised can affect your health, resulting in an increased risk of developing complications, or mental health problems.
Photo by Priscilla Du Preez on Unsplash
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I enjoyed the column and I agree to an extend.
On the stigma basis, in SA all people with diabetes is stigmatised and labeled.
For example, I had to go see a specialist last year, an urologist. When he saw my amputation and the dark glasses I have to wear for low vision, he actually said I look like the poster child for diabetes! He was so condemning and did not even do a thorough check on the issues I took to him. Based on his first impression, diabetes got all the blame and even the treatment plan.
I was so upset that my wife insisted we get a second opinion, which we did.
So it’s not that type 1’s are less stigmatised. Maybe in a first world country, but not in SA.
I will say that you need to be clear with healthcare personal and your team.
As a pharmacist assistant there are vitamins that are safe for type 2, that is not for type 1.
There’s differences in metabolic systems. c
Certain medicines that differ, prescription and over the counter. So yes, tell the relevant people, like paramedics, pharmacists, nurses and doctors which type you have.
I agree we are all in this together, but when dealing with mental health when you see your psychologist or psychiatrist also differ in weight of daily tasks, between injecting and taking a pill, carb counting ect. In my experience type 1 go through diabetes burnout quicker and more often because of injections and even moving injection sites.
I do not feel that type 1’s is an elite club.
We all with diabetes deal with similar and different challenges, and your personality plays a huge factor in how we deal with depression, anxiety and burnout.
The stigma is bad for all with diabetes in SA.
In the 90’s when I was in highschool, I was labeled as a intravenous drug user because of my insulin and had to fight prefects and teachers who mislabeled and prejudged. And that was apart from being contagious because of diabetes!
It’s gotten better in the past few decades, but we are not near where places like Australia is in the understanding of diabetes.
And don’t get me started on the labelling when they see you have a prosthetic leg, or low vision. When you explain its due to diabetic complications most of them think, and some even say it’s your own fault for not living healthy. And our body shapes also make them quick to judge. I am a type 1 and I’ve got a belly, but then they think your type 2 because you’re a bit larger.
Complications due to diabetes is still wildly misunderstood here.
So I introduce myself as a person living with diabetes and multiple complications.
But honestly, it’s hard trying to educate people who have already labeled you and is unwilling to hear you.
So in summary, yes, identify to medical personnel. Diabetes is stigmatised equally across the board in SA.
People who are not living with diabetes should recognise we are people. We may have extra things on our plates, but we’re still people, just like them.
I hope this helps.
Kind regards.
Gavin van Wyk