Language matters

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.


Not to make light of the subject but I live in a community that has virtually nothing going for it to retain young people after they graduate from high school. As a result, we have an aging population with a plethora of diabetics. My barber that recently retired at about 80 always referred to us, his diabetic customers as having a touch of sugar.

In today’s world, especially in more politically correct big cities, I am sure a lot of diabetics would take serious umbrage at this reference, however, countryside we find it kind of cute. So yes language matters, but the audience also affects messaging.

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Language matters, distinctions matter too. Therefore I think people should be precise with their words and specify which type of diabetes they’re talking about. Type 1 can NEVER be prevented and I think it’s important that people understand that. So I don’t agree that those people were wrong to emphasize that type 1 can’t be prevented.

Then blame this Prevent Diabetes Week or abolish it. Don’t fault people for making correct distinctions.

That depends. There is certainly the idea that smokers bring lung cancer on themselves. The difference is that cancer patients are on a short term risk of death, whereas complications of diabetes develop on the long term and are less visible to the general population. I think that’s why blaming a cancer patient may be regarded as more uncivilized.

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I think this attitude or bias is also present in the health insurance industry. I was at a meeting a few years back where a senior level broker made a wisecrack about people “giving themselves diabetes.” And this guy knew (or should have known) that there were a number of PWD in our group plan.

The naggy “change your lifestyle” messaging so prevalent right now feeds this bias. We all know it takes much more than that to keep our BG under control. I wonder if the ADA or other mega-nonprofits intend to push for better awareness of the truth about diabetes? Not sure why they have not done it already.

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Wow, does language truly matter!
I always hate when people are blamed for their situation. People with type 2 diabetes did not cause their disease! It is a genetic issue and as far as I know, we can’t change our genetics. And I hate when I hear the shaming of people, wing told if they would have exercised or eaten better, they wouldn’t have gotten diabetes. Sure it may help it along but if you have the genes, it’s going to happen. If not now, later on. And I hear these people talk about their struggles with weight and how hard they try. Can we not realize that type 2 is more than just blood sugar. It is a condition that is very complicated. So many metabolic issue at play.
So does shame and blame help people work at it or make them want to hide? Does shame and blame get people fired up to keep trying or trying something new?
How many of us have been told we are not trying harder enough, working hard enough, listening to directions completely? Medical professionals can be brutal with the blame and shame. Not enough talking about what a persons day to day life is like. Commune?
I don’t think talking about type 1 or type 2 helps with this disconnect. We all have diabetes, for good or bad, it’s diabetes. And I think with the number of people with diabetes we should be working together not dividing us up. Power in numbers!


I agree entirely. Especially since almost all of us, even here, forget about those with MODY, and T1b, and all the other types of diabetes that don’t fit neatly or at all into “type 1” or “type 2.” I’ve written about it here before, but I’m quite positive that the science doesn’t support the notion that type 1 is a single disease, and type 2 certainly is not. There is just too much variation in the genetics, the disease presentation, the treatments required to normalize blood sugar, and the onset of complications.

Diabetes as a term was originally used to describe symptoms, not the underlying disorder. In my opinion, we still don’t know that much more about the underlying disorders than the Greeks or Romans did, and I don’t find it a challenge to differentiate between those of us with a similar set of symptoms (all “diabetics”) and those of us with more particular autoimmune disorders that affect beta cell function (and a bunch of other stuff too, of course…).


Anyway we trying to do our best and life go on!