WRITTEN BY: Renza Scibilia
This piece originally appeared on Diabetogenic and has been shared with permission.
I had a great conversation the other day with someone who was interested in talking about diabetes and language with me. ‘I’m trying to get a better grasp of why it’s something so important to you, because, quite frankly, I couldn’t care less what people say about diabetes.’
This isn’t the first time people have asked me this. And it’s certainly not the first time I’ve been asked why I spend so much time speaking about why diabetes language matters.
I know the reasons, but to be perfectly honest, I’m not sure that I have them especially well mapped out when I need to explain them. So, let me try here.
There is a tangled and complicated link between the words used when talking about diabetes, and how we feel about it and how diabetes is perceived by others. That link then goes off on all sorts of LA-freeway-like tangents to include diabetes and stigma, and discrimination.
The effects of how we frame diabetes can be felt by us individually. But they can also be far-reaching and affect how others feel about diabetes.
We know that language has the potential to make people with diabetes feel judged and stigmatized. In fact, most PWD I know have at some time or another faced someone speaking to them using Judgey McJudgeface words. Of course, we all respond differently to this. For some people, it’s water off a duck’s back. They couldn’t care less what people say and just ignore it. For others, it’s almost a challenge – they use it as motivation to prove that they ‘won’t be beaten’.
But that’s not the case for everyone. For some people, it can be absolutely paralyzing.
Fear of being judged and shamed may lead to some PWD to not wanting to attend HCP appointments and, as a consequence, falling behind on complication screening. Some PWD may not even tell their loved ones they have diabetes for fear of being judged. I have met PWD who made the decision to keep their diabetes a secret for years, not telling another person. This can add to feelings of terrible isolation.
When diabetes is spoken about in stigmatizing and demeaning ways, this leads to the spreading of misinformation. And this can have far-reaching consequences.
We know that kids with diabetes may be teased by their schoolmates. Their teachers may not respond appropriately to diabetes because of the way diabetes is framed in the media or by others. We can’t really blame teachers. If diabetes is punchline fodder for every B-grade comedian, or an excuse to point fingers at those living with it by every tabloid news outlet, how can we expect anyone to take it seriously?
(And if right now you are thinking ‘This is why we need to change the name of Type 1 diabetes ’, stop it! People with Type 1 diabetes shouldn’t be teased or mocked or judged, but neither should people with Type 2 diabetes. This isn’t about people understanding the differences between Type 1 and Type 2 – this about understanding diabetes.)
The language we use when talking about prevention in diabetes – whether it be preventing Type 2 diabetes or preventing diabetes-related complications – means that there is an underlying idea that developing Type 2 or complications must be the fault of the individual. ‘If you can prevent it and haven’t, it’s your fault. You obviously lived an unhealthy lifestyle/are lazy/didn’t listen to your doctor/failed to follow instructions/refused to do what you were told etc.’ Can you imagine hearing that, or feeling that is what people think about you – all the time? This is the language – these are the words – used to talk about diabetes.
A couple of weeks ago in the UK, it was Prevent Diabetes Week. I saw countless tweets from people urging, begging, pleading with others to remember that Type 1 diabetes can’t be prevented and the week refers only to Type 2 diabetes. I wonder if those tweeting realized that comments such as these actually contribute to the stigma associated with Type 2 diabetes? Of course Type 1 diabetes can’t be prevented. But in many cases, neither can Type 2 diabetes. There are so many non-modifiable factors associated with a Type 2 diagnosis – factors beyond the control of the individual.
But let’s look beyond individuals, the health system and the education system for a moment. What else happens in other settings when diabetes is spoken about in stigmatizing ways?
Health organizations, including diabetes organizations, frequently seek donations from the public to continue the important work they do. There is only so much money in the donation pie, and yet there are more and more competing organizations representing people with different health conditions wanting a piece of that pie.
Donations are harder to come by from the general community when there is the idea – the wrong idea – that diabetes is a largely preventable lifestyle condition that is the fault of those diagnosed. There is not the idea that people who have developed cancer brought it on themselves, even though we know that some of the risk factors associated with a breast cancer diagnosis are the same as for Type 2 diabetes.
Research dollars for diabetes are far less than for other health conditions. We see that every year when successful NHMRC grants are announced. Diabetes is the poor cousin to cancer research and CVD research.
Diabetes is just as serious as any other condition that is worthy of research dollars and fundraising dollars. Yet because of the way we speak about it and the way diabetes as a condition has been framed, there is a perception that perhaps it isn’t.
Words matter. Language matters.
So, what I want to say to people who think that talking about language and words is a first world problem that only occupies the minds of the privileged is this: I acknowledge my privilege. But this isn’t simply about words. It’s about perception.
Until diabetes is considered the same way as other conditions that are taken seriously and thought of as blameless, the trickle-down effect is people with diabetes will continue to feel stigma. Diabetes will continue to be the poor cousin of other health conditions and diseases because there is the misconception it is not as serious. People will not as readily make donations towards fundraising initiatives. Research dollars will continue to fall short, instead going towards ‘more worthy’ conditions.
That’s why I care so much about diabetes language. Because language matters… so much.