The language of diabetes. I’m not going to lie, I have resisted writing this article for some time – and I’ll tell you why.
I knew that once we had had this conversation, we would need to make some pretty big changes. And I am lazy at heart and I didn’t want to have to make those changes – even though I knew they were the right thing to do. What am I talking about? I’m talking about the word diabetic, mostly. It’s not cool.
Person with diabetes vs diabetic
I know that. Only, I don’t mind being called a diabetic – it doesn’t bother me in the slightest. I have it tattooed on my arm – Type 1 diabetic on insulin. And we called our Facebook page Diabetic South Africans, 10 years ago, when we didn’t know better… We also called our podcast Diabetic South Africans, last year, when we kind of did know better. And I am resistant to change! But no more.
You know when I realised it was so important to change the language we use around diabetes? When I was editing South Africa’s first Diabetes Charter, last year. And I replaced all the references to ‘diabetic’ with ‘person living with diabetes’. And yes, it’s more of a mouthful, but it changes the flavour completely.
We also changed all the references from ‘patients’ to ‘people with diabetes’, and all of a sudden it feels as if the blame shifts. We’re not pigeonholing diabetic patients for being non-compliant, we’re talking about the lived experience of people with diabetes – the challenges we face every day. This stuff is important.
South Africans with Diabetes
So! We have renamed the podcast and Facebook page to South Africans with Diabetes, and we are going to learn more, so that we can do better.
I asked Renza Scibilia, the manager of Type 1 Diabetes and Communities at Diabetes Australia, to share some of her knowledge on this topic with me. She has taught me so much about diabetes and language in our various interactions online.
Why does the language of diabetes matter?
It’s not just language, it’s communication. So it includes images, tone and words, but it’s also really about the meaning and and the attitudes that language imparts when we use certain words. So you spoke about diabetics and not using that term anymore and substituting it with persons with diabetes, and also patients and using people instead. But as a person with diabetes, you can call yourself whatever you want to call yourself.
A lot of people think it is just about political correctness. But it’s really about the need to use person-centered language. Let’s not use language that’s going to offend people. That’s kind of important.
Part of the reason that we need to really work to change the way that people are thinking is so that people understand that diabetes is really complex. And living with diabetes is hard work. And I think that’s part of the reason why I’m so passionate about language: because I want people to respect and understand just how tough living with diabetes is.
What is it about diabetic, specifically, that is so triggering for so many people with diabetes?
We’ve asked our community what language they prefer, and many of them don’t seem to mind – in fact, many chose the word diabetic over person with diabetes… But it still feels important. I suppose it’s not about how each person refers to themselves, but how the media, and healthcare and government refer to people with diabetes – because this is where stigma starts.
Diabetes Australia created a position statement on language and diabetes – Language Matters. The description is so powerful:
Our language matters. The words we choose, and the way we use them, influence, persuade and affect how people view the world. Words do more than reflect reality: they create reality. Words are powerful. They can create a culture in which people feel valued, understood, and supported – or one in which people feel misunderstood, undermined, stigmatised, and excluded. Words can express conscious or unconscious bias.
People with diabetes, their families, and people at risk of diabetes, need and deserve communications that are clear and accurate, respectful, and inclusive, and free from judgement and bias.
I mean, can we get a round of applause? I love this!
How was this position statement received?
At first, it was a bit of an uphill battle. We started with quite a number of presentations that we did for healthcare professionals, because we felt that that was a really good and important place to start. And there was some pushback, and there was some reluctance to accept what was being said. But by far, it was just people not realizing how impactful language could be. One of the things that was really important, that went alongside the development of the position paper, was some research to back it up.
Australia may have launched this position paper 10 years ago now, but we didn’t invent that this was an issue. This has been something that people with diabetes have been talking about for years. And suddenly, it became really hard to ignore.
I’ve learned over time that the best way to explain why something is important when you’re trying to tell a story and convince people and bring them along, you’ve got to win their hearts and their minds.
Recent diabetes and language research
We conducted an online survey, with a significant sample of people with diabetes globally who were invited to participate. And when we looked at the breakdown, there was about 50/50 outcom , in terms of people who prefer to be called diabetic as compared to person with diabetes. So we felt that it was really important then to highlight that and say: You need to listen to what people are saying. It’s not a blanket, don’t use this word, use this word. Whilst some people will say, “I don’t mind being called a diabetic,” there are a lot of people who say, “I really do mind that,” whereas no one seems to really mind being called a person with diabetes.
So that’s what we’re saying – to health professionals or to health centres, or to the media. If you say diabetic, 50% of the people might get their back up, but if you say the other one, no one will notice. So do the stuff that’s not going to offend.
Can diabetes and language help with diabetes burnout by lifting a lot of the blame and shame?
Of course, absolutely. We’re always wanting to minimize the fact that people with diabetes have so much on their plate already. And that can lead to burnout and to diabetes distress.
So if you’re living with diabetes for 5-10-15 years, and you’re constantly hearing, you know, I’m being tested, I’m being tested, I’m testing my blood sugar, it’s exhausting. We need to reframe the way we talk about our numbers.
Listen to Renza’s podcast about language and diabetes
She tells so many great stories! You can listen to it here.
Please reach out and share your thoughts on diabetes and language on Facebook – South Africans with Diabetes or on Instagram – @sweetlife.org.za
Would you rather listen to this information?
Here’s an episode of our podcast about it!
About the podcast guest
Renza Scibilia has lived with type 1 diabetes since 1998. She is a diabetes advocate and activist, and is the Head of Community and International Affairs at Diabetes Australia. She has worked for diabetes organisations for the last twenty years, promoting a person-centred approach to the development, design and delivery of diabetes technologies, services, resources and education programs. Renza has extensive experience as a consultant, facilitator, presenter and media spokesperson and is frequently invited to speak at conferences where she speaks about topics including peer support in diabetes management, diabetes technology, and why communication matters in diabetes and healthcare. Renza is well-known in the diabetes online community, and is well-versed in social media, its use and impact on people with chronic health conditions and application in peer support. She is the author of Diabetogenic, (www.diabetogenic.wordpress.com) and a regular contributor to many online and print health publications.
Photos by Brett Jordan and Amadour Loureiro on Unsplash
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