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Yesterday, I gave a talk about language and stigma, and one of the questions I was asked focused on stigma within the diabetes community. I’ve had this post sitting in my ‘unpublished’ folder for months now, and decided that today was the day to publish it. I’m dedicating it to all my friends with type 2 diabetes.

There is a photo of me from 2011. I am standing in my office at work, wearing a bright red t-shirt. I’m staring at the camera, my eyebrows raised, a smirk on my face. My fingers are pointing to the words printed across the front of the t-shirt: Type 1 diabetes. The real diabetes. 

At the time, I was running a program that was exclusively about developing and running programs and activities for people with type 1 diabetes. It remains one of the things I’m most proud about in my career, because at the time, what was available to people living with or affected by type 1 diabetes was really, really limited.

At its peak, our program ran over 20 events across the state in both the city and rural areas, including diabetes technology expos that featured all the latest and greatest in Dtech; a diabetes and pregnancy program; we published a monthly type 1 diabetes-specific e-newsletter; established a program of peer support groups for people affected by type 1 diabetes; and also included in the program were camps for kids with diabetes. We put type 1 diabetes on the map as a program area that needed special attention, resources, funding and acknowledgement. The program was entirely ‘user-led’ meaning that everything we did came from feedback from the community, and many of us in the team were living with diabetes ourselves. Many of the things I see these days in the diabetes community are activities we first did fifteen years ago.

On top of the community engagement and events we were doing, the type 1 focus meant that we were now demanding attention in the policy and advocacy space. The specific needs that were relevant to people with type 1 diabetes were being discussed separately, and that yielded some impressive results – improvements to and extension of the Carer Allowance for parents of kids with type 1 diabetes; funding of pump consumables on the NDSS; pathways to funding of digital technology solutions being on everyone’s radar. We had (and continue to have) wins because of this attention to type 1 diabetes. We started doing this eighteen years ago and are still pushing the agenda.

I have no qualms about the program we started being an exclusively type 1 diabetes program. At the time, the organisation was already doing lots for people with type 2, and my work was addressing a gap in our programs and services. I was employed as a response to feedback from people with type 1 diabetes who felt that the services offered where not relevant to them. So, by working closely with the community, we built something from the ground up that provided people with type 1 diabetes what they wanted.

When the photo I described at the opening of this post was taken, my head was exclusively working on type 1 diabetes activities. I thought the shirt was cute and fun, and that I looked cute and fun wearing it. And I knew that so many of the people with type 1 diabetes that I was working alongside would love it too. The response when I shared the photo on Facebook proved me right. I know how to play to an audience!

Today, I am horribly ashamed and embarrassed that I wore this shirt with such glee, and the attitude that I held towards people with type 2 diabetes. Because while I saw the t-shirt as a just a bit of fun, the truth underlying it was that I did believe that type 1 diabetes was the more serious, the more important, the more misunderstood, the more maligned, the more worthy condition. After all, we couldn’t have done anything to stop our diabetes, could we? We were completely blameless. How horrible I feel today even typing those words.

I deleted the photo from my Facebook a number of years ago, but I still have it saved. Any  time I stumble across it, I feel a rush of shame. I was going to share it with this post, but a wise friend counselled me against that idea, saying that it was likely that somehow it could be used out of context and against me. It will remain hidden for now, bundled up with that shame and disgust I rightfully feel when I see it.

So, when did things change for me?

Of course, it was when I started listening to people with type 2 diabetes. It was hearing about their challenges and the constant stigma they felt. It was hearing how they felt when they were misrepresented in the media, or by others who knew little about type 2. That was when I realised how hurtful the narrative surrounding type 2 diabetes was for many of the people actually living with it.

I’m ashamed to say that harmful narrative that I actually contributed to. I certainly hadn’t always behaved with intent, but some of the time – such as when wearing clothing that suggested that I had the ‘real’ type of diabetes – was deliberate. Calculated or not, my complete lack of knowledge about type 2 diabetes, and the challenges faced by those living with it, meant that I was very often stigmatising.

I knew I needed to change what I was saying. Whilst I still believed in the absolute philosophy of the program I was leading, and the necessity of it having a type 1 focus, I understood that I needed to reframe the way I spoke. And I needed to be accountable to what was going on around me in discussions about all types of diabetes. The commitment I had to calling out misinformation about type 1 diabetes could no longer be at the expense of type 2 diabetes.

I have said this a million times – no one has to advocate for any cause they don’t want to. No one has to take on something that they don’t have the time, energy or inclination to focus on. No one has to be an advocate for all types of diabetes. There are some absolutely brilliant people who hone their energies on issues surrounding only one type of diabetes because that is what they know and what they are passionate about, and all the power to them – especially when they do that by elevating their cause BUT NOT diminishing others.

For me, my focus is on a number of different things and some of them actually do remain specific to type 1 diabetes. Some span all types of diabetes. The difference these days is the way that I do it.

I am sorry to all my friends with type 2 diabetes who I misunderstood, misrepresented and stigmatised. I have no excuse for my behaviour, but I do own it. And I promise I will keep calling out anything that I see contributing to the narrative that I once was part of.


I’m writing the next bit in bold, because a while ago I published a post suggesting that when correcting stigmatising comments in the media, we don’t necessarily need to specify type of diabetes, and it was somehow misconstrued to mean things that I did not actually say. The things in bold below? There are dozens of examples of me stating these exact things through my blog, talks I’ve given, other articles I have written. But here they are in one little place just so my position is super-dooper clear.

  • Of course, we need to know what type of diabetes we are living with. We have a right to know and understand our own body and what’s going on with it, and the implications of our type of diabetes. For example, autoimmune diabetes comes with a whole heap of other considerations such as AI clustering and what that can mean to other family members.
  • Of course, we can and should feel free to say ‘I have type x diabetes’ if we want to. We can identify and talk about our own diabetes any way we want to. No one has the right to tell us otherwise. (Now I want to have ‘type x diabetes’ because that sounds all cool and mysterious and as though it could be the starting point of a disaster movie about world domination.)
  • Of course, there are some groups of people who really do need to fully, completely, utterly, absolutely understand the different types of diabetes and what they mean. For example – HCPs should know, policy makers should understand (to name just a couple of groups).
  • Of course, we should know the best management on offer for our own type of diabetes and be clear about what we are doing/using ourselves.
  • Of course, we should know that people diagnosed with type 1 diabetes need insulin and there is no other choice.
  • Of course, we should look at outcomes for all types of diabetes and see what measures need to be taken to improve them – and those measures will most likely be different for different types of diabetes.

I have been fairly quiet on Twitter lately. My blog has been dormant, and I’ve really only been using social media to connect with family and friends. Oh, and sharing recent baking efforts – as evidenced by this Twitter thread last night.

But that doesn’t mean that I have stopped following what is going on. Plus, it’s difficult to ignore stuff when many people start sending DMs wanting to know why I have been silent on an issue about which I am known to be very vocal.

I’m talking about last week’s webinar hosted by Diabetes Victoria, presented by Dr James Muecke.

Firstly – some disclaimers and disclosures. I worked for state-based Diabetes Victoria from 2001 to January 2016. Since then I have been working for Diabetes Australia, which is a national organisation.

James Muecke is the 2020 Australian of the Year. I wrote a little about him in this post which caused a shit storm of its own when a UK HCP tone policed me my writing and said that I was doing a disservice to people with diabetes by writing in the post that there is no need for people to know what type of diabetes they live with. Yeah – I didn’t say that, but anyway…

But the issue was not Muecke’s presentation; it was the title of his presentation: Blinded by Sugar.

My reaction when I first saw the promotional flyer was horror. And then shock. And then surprise. I was honestly stunned.

And then, once the surprise and confusion subsided, I felt distress. That feeling of dread, and sadness, and anxiety that settles itself in the pit of my stomach. And doesn’t move.

When I talk about language, its power and how it is personal, this is what I mean. Because to me, it’s not just a couple of words in a clumsy, ill-conceived title. Suddenly, it is every single time I sit in the waiting room of my ophthalmologist’s waiting to hear if diabetes has started to affect my vision; it is the flooding back of words from my first endo appointment, where I was told that if I dared let my glucose levels get above 8mmol/l, it would be my fault if I became blind; it is the blame and shame and stigma and finger pointing that we see and hear every time we are told to ‘look after ourselves’ as if we are wilfully ignoring our health and not caring about our wellbeing; it is the guilt that I feel when I eat some cake or a biscuit and the times people have asked ‘should you be eating that?’; it is the feeling of frustration and unfairness of when I can’t work out how my glucose levels could possibly be high after I’ve done everything ‘right’, and the fear of what damage is happening to me at that moment; it is the burnout, the anxiety the days of feeling so overwhelmed because I just.can’, but I have no choice’.

THAT is how I feel when I see words like those in the title of that webinar presentation.

It’s no surprise that this was picked up by some people in the DOC. There are people in the community who are highly attuned to language and diabetes and will call out any example that is doing a disservice to people with diabetes. I am usually one of those people. I’m not proud that I didn’t say anything publicly when this was unfolding over the weekend.

So, what has happened since then, after some of the DOC shared their feedback?

Diabetes Vic CEO, Craig Bennet issued an apology and should be commended on how swiftly he did that. Owning the error and promising to do better is always appreciated.

Today, it seems that the LCHF bullies have now jumped on board, supporting the messaging in the original promotional flyer.

I will say this strongly and without reservation or apology. When you find that you are satisfying this group, you are not helping PWD. It is a person from this group that tweeted this about a group of dietitians. It is this group that fat shamed me after I gave a television interview last year. It is this group that has stigmatised people living with diabetes, claiming they have brought on diabetes-related complications for daring to eat a scoop of ice-cream.

I couldn’t care less about how anyone chooses to eat. I do care a lot when it comes to how certain groups in the community contribute to the already overwhelming stigma faced by people with diabetes.

And finally, everyone makes mistakes. In the last few months, we’ve seen some pretty miserable efforts by diabetes organisations around the world. But the thing that has stuck with me through each of these is how easily they could have been avoided. We do need more engagement with people with diabetes – especially those who can help shape effective communication and messaging.

This blog has been quiet for the last couple of weeks because, honestly, there is nothing that I had to say that was of any value. Instead, I’ve been listening, learning, talking with friends and family, crying with friends, having difficult conversations with people. And feeling uncomfortable. I’m learning to not fight that discomfort, but instead examine it and work out how I can be involved in change.

Today, I’m dipping a toe back in slowly, and sharing this from New Yorker Cartoons (maybe this blog really is going to become nothing more than an appreciation page of New Yorker Cartoons and Effin’ Birds). This cartoon spoke to me. Because: tone policing.

Recent New Yorker Cartoon by Jason Adam Katzenstein. (Click for source)

I write about being tone policed in the healthcare space, and that is what I am writing about today. It’s happened for as long as I’ve spoken up about my experiences of diabetes and my thoughts and ideas about healthcare. I’ve been called aggressive so many times by HCPs who have not liked it when a mere ‘patient’ has suggested that they are being damaging to people with diabetes in the words they are using to talk to and about us.

The bolshie nuns who taught me at secondary school taught me that when women are accused of being aggressive (or strident), it is usually because we are being assertive. I’ve come to learn that it’s not just women. It’s anyone who has, for too long, been expected to just take what is dished up – and to accept it with gratitude.

Being assertive, being aggressive, being challenging and saying enough is enough should not result in being told to tone down. Or to be excluded from discussions unless we agree to be more moderate. Or more respectful. When that respect is truly a two-way street, then let’s talk about that. But for as long as power imbalances are at play, and HCPs insist on speaking on behalf of us, or only agreeing to speak with us if they like what we are going to say; or when HPCs feature more in diabetes campaigns because they insist on centring themselves rather than actual people living with the condition…well, then we don’t have true two-way respect.

Our diabetes community is not immune from tone policing each other. It’s happened to me. I continue to listen to type 2 diabetes voices because I can never expect to understand what they are experiencing in our community unless they tell me. It may be uncomfortable for me to hear – but that discomfort comes from a place of my complicity. It is not my place to tell them to moderate the way they are speaking about their experiences, just because it makes me feel prickly. But it does happen. In the timeline of my involvement in the diabetes world, I know that when I was first diagnosed, I contributed to the stigma many people with type 2 talk about, and then, as I learnt more, I moved to being quiet about it when I saw and heard it – even though I disagreed with it. Now I am trying to be a better ally and calling it out when I see it. And shutting up and listening and accepting what people with type 2 say.

We learn when we listen. We learn when we are open to accepting that we do not have all the answers. We learn when we stop being so centred on our own experience and try to turn the spotlight onto ourselves when instead we should be shining it on others.

We learn when we don’t tell people how they should feel or how they should speak.

As details of the coronavirus pandemic started to be revealed, the message for people with pre-existing chronic health conditions wasn’t good. It became apparent pretty early on that we were in the ‘at risk’ group. When the ‘only the elderly and those with health conditions need to worry’ lines were trotted out on every forum imaginable, many people with diabetes worried, because we were part of that ‘only’.

And so, people with or affected by diabetes tried to collect the best information about how to keep ourselves safe. One of the most common topics of discussion in diabetes online discussion groups, was about seeing diabetes healthcare professionals. Was it safe? Should we go? What about flu shots? And HbA1c checks? As telehealth services popped up, some were relieved, others were confused. Some people felt they didn’t want to be a burden on their HCP, and indeed the health system that we were told was about to be inundated and overwhelmed. Some diabetes clinics were suspended, only taking appointments for urgent matters.

Last week, Monash University released a report that showed that people with diabetes are not seeing their GP at the same rate as this time last year. The development of diabetes care plans is down my two thirds, and diabetes screening is down by one third.

I was interviewed for a television news story yesterday about these finding. Before agreeing to be the case study, I contacted the reporter to get an idea of just how the story was going to be pitched. ‘We’ll be highlighting the findings of the report, how there are concerns now that there will be an influx of people with diabetes needing to see their doctors in coming months, and how it is understandable that people may be anxious about exposure to coronavirus if they do go to the doctor, and therefore are cancelling, postponing or not making appointments at the moment.’ She paused before finishing with, ‘We’re not blaming people at all.’

They were the magic words I needed to hear and gave her our address, after informing her that the interview would have to take place on the front veranda or in the garden because we were not accepting visitors into our house still.

The under two-minute new story was pretty factual and outlined details of the study. (The grab from me they used had me explaining how I had made the decision to postpone my annual eye screening by a few weeks, rather than the appointments that I had still decided to keep such as my flu jab and telehealth appointments). But overall, it was a good story – factual and definitely not blaming.

Sunday afternoon at the (home) office.

And so, perhaps I was feeling a false sense of safety when I read a newspaper report today that mentioned the study. Speaking about the fallout from people not seeing their GP during the pandemic, a doctor quoted in the story said:

‘The last thing we want is a tsunami of serious health issues and worsening chronic conditions coming after this virus, simply because people have stopped taking care of themselves or consulting their GP.’

I read that, re-read it and then couldn’t get past these nine words:

Simply. Because. People. Have. Stopped. Taking. Care. Of. Themselves.

How could a health professional think this about people living with chronic health conditions at any time, but even more so, how could they think that during the confusion and anxiety of living through a global pandemic where outcomes for those same people are likely to be worse?

People may not be going to see their GP, but it is not in defiance or because they have made the wilful decision to stop taking care of themselves. In fact, I honestly don’t know of anyone who has ever made that decision – pandemic or not.

Delaying my eye appointment isn’t an example of me not looking after myself. It is a reflection of the real anxiety I am feeling about exposure to coronavirus – anxiety that became heightened last week when restrictions were eased, and then only got worse again when I heard the news about deaths of people with diabetes. And I know I am not the only person who is feeling the way I am at this time.

And any other time that I have been accused of ‘not taking care of myself’, I was doing the absolute best I could in that moment, considering all the other things that were going on in my life. And yet, it took me a long time to find a diabetes healthcare professional who acknowledged that when I am not in the right place to be managing my diabetes, we first need to start through those other things first. She never blamed me. She just helped me through.

A health professional making the comment that people not attending appointments are ‘not taking care of themselves’ is actually a much bigger problem than just when looked at in the context of COVID-19. It happens all the time.

Stop blaming people with diabetes. Just stop the blame. Stop blaming people if they don’t get diagnosed early. Stop blaming us if we develop complications. Stop blaming us if we develop complications that didn’t get diagnosed early. Stop blaming us for not caring for ourselves.

But then, I guess, it won’t be quite so easy for HCPs to wash their hands of any responsibility they may have for the health outcomes of people with diabetes if, instead of pointing fingers, they hold a mirror up for a moment.

Today, my social media feeds are full of this screaming headline:

(Click for article)

As soon as I saw this, I threw my phone away from me and put my head back under the doona. Aren’t Fridays meant to be about celebrating a week well done and looking forward to the weekend?

Instead, I woke to far too many notifications about diabetes and death – words I really don’t like to see together, especially not so early in the morning.  Fortified with coffee, I took a deep breath and in I went, reading the article from top to bottom.

I’ve had a knot in the pit of my stomach all week. It moved in and made itself comfortable when the Australian PM started talking about easing lockdown restrictions. I’ve spent the last few days trying to work out how I can manage this anxiety in a sensible way, and not do what I really want, which is to build a cellar under our house, stock it with coffee, prosecco and Nutella, and move in there until sometime in 2030.

This article and the subsequent commentary twisted that knot tighter and pushed it in deeper. ‘I live here now,’ it seemed to be saying. And then added, ‘Get better WIFI; it’s patchy in here.’

The fact that the article raises more questions than it actually answers hasn’t helped. More details – details that may help to better understand exactly what is going on – won’t be published until next week. And so, without enough content to provide explanations, advice and information that might help PWD feel that perhaps it’s not all hopeless. Instead, The Guardian offered some throw-away lines about the associations and causes of type 1 and type 2 diabetes:

‘NHS England’s breakdown, published for the first time on Thursday, did not specify how many of the 5,873 diabetics who died had type 1 diabetes, an autoimmune condition not related to lifestyle, and type 2 diabetes, which is closely linked to being overweight. Fuller details will be published in an article in a medical journal next week.’

This just seems like an opportunity for people to appease people with type 1 diabetes, and point the finger and further stigmatise people with type 2 diabetes, instead of acknowledging that people with ALL types of diabetes might possibly find this news confronting. What is the relevance here to being overweight? If there is a correlation, please let us know and does it impact people with type 1 diabetes who are also overweight?

I am not for a moment saying that this sort of information should be hidden away or swept under the carpet. Of course, I want to understand how diabetes and COVID-19 interact. But there has to be a better way to get information to the masses without adding to the anxiety and worry. And definitely in a way that doesn’t sensationalise, point fingers and add to social stigma.

The article goes on to highlight the link between Alzheimer’s disease and deaths due to COVID-19, and as I read the quote from Alzheimer’s Research UK’s director of policy and public affairs, Samantha Benham-Hermetz, I wanted to reach into my MacBook and give her a metaphoric, and therefore socially distant, hug. She said:

‘This shocking news will no doubt bring even more worry and fear to people affected by dementia and their loved ones, during an already challenging time.’

I know that I and so many of my friends living with diabetes, and their loved ones, have been feeling worried and scared since this all started, and this article has the potential to add a lot more. The fact that this response was acknowledged out loud (and I think it’s fair to say that people affected by diabetes would be feeling the same as those affected by dementia) made me feel so grateful and heard.

Statistics are statistics, and data are important; I know that. But sharing data with the masses only works if it is done effectively and communicated in a way that doesn’t leave people feeling hopeless, but rather empowers us to make decisions that contribute to minimising risk.

My heart breaks for my friends with type 2 diabetes, and their families, who not only have to digest this headline and information, but also need to consider how the cavalier and simplistic definition of type 2 diabetes will now be interpreted by the general population who already are so quick to blame and stigmatise.

I live with diabetes, and I understand that I am high risk of complications, and so it seems, death if I get COVID-19. But mostly, more than anything else, I am a person trying to make sense of all of this and stay safe, healthy and sane – just like everyone else.

P.S. Hey – Guardian UK – I fixed this para for you:

‘NHS England’s breakdown, published for the first time on Thursday, did not specify the type of diabetes with which the 5,873 people who died were diagnosed. Fuller details will be published in an article in a medical journal next week.’

Last Friday night, I sat around with three other women with type 1 diabetes and we had a chat. When I say ‘sat around’ I mean Zoomed, but other than the fact that we were seeing each other through computer screens, it could have been any other time I was meeting up with women with diabetes for a casual chat.

The reason for this gathering was so that I could be interviewed for a new Australian podcast. Mamabetes was launched just last week, and is a project by three amazing Aussie advocates, Ashleigh, Rachel and Carleigh, all who are living with type 1 diabetes.

I was a little surprised when they reached out to me. My kid is fifteen and my experience of pregnancy and diabetes is a little old now. But they wanted to speak with me about stigma and language, and how that can impact on all sorts of diabetes experiences – including pregnancy.

I’d never met any of the women before and other than a short conversation with Ashleigh a couple of days before, the first time we chatted was when Zoom brought their gorgeous faces and happy smiles into my study at home. I’d been sent a brief outline of what they hoped to get from our discussion and a few broad questions for me to consider before we got started. We were going to chat for about fifteen minutes and see where our conversation took us.

I’m sure that we could have stuck to that timeframe if we really wanted, and to the questions I’d been offered as a guide. But an hour later, we were still chatting, and we’d taken off on some wonderful tangents, as happens when people with shared interests and experiences come together.

The podcast episode with our chat dropped this morning and I’ve been listening to it in bits and pieces in between the Zoom existence so many of us seem to be living at the moment. We cover lots, so do have a listen! Click on the image below to go to the podcase, and the Mamabetes other socials are listed for you to follow along.

Asheigh, Rachel and Carleigh are creating something really important here, and providing women with diabetes a place to learn and connect – around an issue that is relevant and important to many. Thanks to these three dynamic women for doing this, and for inviting me to be a part of their second podcast episode.

Go follow…

Mamabetes on Twitter

Mambetes on Facebook

Mamabetes on Instagram

Recently, the Australian of the Year was announced. This year, the gong was awarded to Dr James Muecke, an eye surgeon from South Australia, who was acknowledged for his work raising awareness of type 2 diabetes and its links to preventable blindness.

I didn’t really know of Muecke before the announcement, but clearly, he is very accomplished, and his work reaches beyond Australia’s borders. He co-founded social impact organisation, Sight for All, which raises funds to deliver vision-saving programs and eye health projects to people in under-resourced countries.

However, it is Muecke’s work in linking type 2 diabetes and blindness that received the majority of the media coverage, with (as can always be relied upon) some pretty average reporting. Interviews with and soundbites from the newly crowned Australian of the Year did focus on a simple and incorrect equation of sugar equalling diabetes, and this certainly did seem to concern a lot of people responding to what they were seeing online.

I sighed as I read through a lot of that commentary, dismayed as the calls to differentiate between the types of diabetes drowned out Dr Muecke’s award, with repeated bleats that ‘Sugar didn’t cause my/my child’s type 1 diabetes’.

Sugar didn’t cause anyone’s diabetes – it’s just not that simple. I appreciate wanting people to understand that drinking too much Coke isn’t why type 1 diabetes develops. But equally, I want people to understand that it isn’t why type 2 diabetes develops either.

Asking for clarification of the different types of diabetes isn’t always necessary because it doesn’t always matter. You bet that it does matter at times, but other times, it really doesn’t.

We see this time and time again. Think about the time that café in Sydney thought they were being cute by calling a dessert ‘Diabetes’, or the time that guy on that UK cooking show referred to something as ‘Diabetes on a plate’. Was this really the time to get all uptight because the difference between type 1 and type 2 diabetes were not specified? Were the calls to stop stigmatising type 1 diabetes by not clarifying that ‘our’ diabetes isn’t because we ate that dessert? Does it matter in these moments if the person stigmatising and misrepresents diabetes doesn’t point out which sort of diabetes?

It really doesn’t. If the dessert was called ‘type 2 diabetes’ or the recipe was ‘type 2 diabetes on a plate’, it still would have been wrong. It still would have been stigmatising.

And yet, every time another lousy comedian, or celebrity or chef makes a diabetes joke, or the media gets diabetes wrong, or the Australian of the Year explains diabetes in the wrong way, the predictable cries, and rapid soundbite responses only feed into the stigma, prejudices and misconceptions of type 2 diabetes.

We can do better – we need to do better. And we can, by being more thoughtful in our response to correct people getting diabetes wrong.

I should point out that this goes beyond people with (or parents of children with) type 1 diabetes. Lots of other diabetes stakeholders get into it too. Some health professionals trip over themselves in their endeavour to speedily demand clarification of type, (even when it is not necessary). This has always left me somewhat befuddled and wonder if they think this will win them brownie points with the cool kids on Twitter. Surely HCPs working in diabetes understand that sometimes putting ‘type 2’ before diabetes is not actually rectifying what is factually incorrect in the original statement. And that should matter, a lot more than the ‘likes’ from the type 1 diabetes Twitterati they seem so eager to impress!

We can get it right, and get it right quite easily. When the Australian of the Year announcement was made, the comms team at Diabetes Australia absolutely nailed the messaging, striking a balance between commending Dr Meucke for his award, acknowledging how wonderful it was to see the Australian of the Year platform being used to highlight the link between diabetes and diabetes-related eye disease (with a plug for KeepSight!), and adding a note to clearly and eloquently explain the complexities of type 2 diabetes, the role that genetics and other non-modifiable risk factors play in its diagnosis, and reminding people that type 2 diabetes is not caused by eating sugar.

I think the team got it right – the information was correct and accurate and did not in any way add to the stigma of diabetes. (Disclaimer: I work for Diabetes Australia and I’m talking about my colleagues.  Whilst I sometimes work with the comms team, they are all far smarter and better at communicating than I could ever hope to be. Which is possibly why they won’t let me near any of our socials. That, and they worry I’ll swear, or share an Effin’ Birds cartoon…)

Each type of diabetes – and there are many! – has its own complexities and some of the time we need to make sure that it is clear which diabetes we are talking about. But next time you find yourself about to take to the keyboard to correct some misinformation, ask if you are actually adding to that misinformation. And if you see someone demanding such clarification, ask them if they are aware they are contributing to type 2 diabetes stigma. Because I think a lot of the time that is exactly what is happening.

Complete digression, but the title of this post reminded me of these books, which anyone who has been around kids in the last 15 or so years would know about!

My first endocrinologist was a really nice man. He was very kind in the way that he acknowledged that I was dealing with something quite scary – a new diagnosis of type 1 diabetes.

I remember he was nice. In fact, when people asked me what my new doctor was like, it is highly likely that I actually used that word to describe him.

What I remember more was the way that he told me about diabetes-related complications, and the way that he told me that if I didn’t look after myself, and follow his instructions to the letter, that I would get those complications. If I was a good girl and did as I was told, I would be right. If I didn’t, every one of those terrifying, horrible, distressing complications would occur and it would be my fault.

Now, he didn’t say this in an ‘un-nice’ way; he wasn’t mean, he wasn’t cruel, he didn’t yell. He was saying it as if it was an absolute, and I quickly came to understand that being compliant was what was expected, and that there was a good and bad way to behave in diabetes, and that resulted in good and bad numbers. If I did what he said, I was good; if I didn’t, I was bad. And if I was bad, terrible things would happen and I would have no one to blame but myself.

That was twenty-one and a half years ago, and I can still hear those words in my head. The language he used set me on a course of not coping with my diagnosis and feeling intense fear about my future – a fear that sometimes paralysed me into inaction.

This week, there has been discussion on Twitter about what the #LanguageMatters movement is all about. It started with this tweet from a diabetes consultant in the UK, which suggests that it is ‘..mostly about being nice…’.

Eight years ago, when Diabetes Australia launched the first language position statement, the response from many was that this was not an important issue and that perhaps we should put our efforts into other things; things that matter. This was seen as a little bit of fluff that was a waste of time. It’s political correctness gone mad, was the reaction from many.

We’ve become smarter at showing the evidence to support just how destructive words and language can be. We hear stories from people who explain how damaging language resulted in them not seeking help when needed, and how the fear of being blamed kept them away from their healthcare team. We can show that diabetes gets fewer research dollars; that it’s harder to get people to put their hands in their pockets to donate to a diabetes charity, and that the general community does not understand just how serious diabetes is.

The timing of things is interesting, and it seems that last night someone on the TV show The Great British Bake Off referred to a dish as ‘diabetes on a plate’. The host’s reference to the sugary confection in that way wasn’t about him not being nice. It was about him using a phrase that has been thrown around by many for years, because it is accepted that diabetes is something to make fun of.

Now sure, the way people responded to this incident could be termed as nice and not nice. Nice would be ‘Please don’t refer to my health condition like that’; not nice would be ‘Don’t be an arse’. Obviously, I lean towards the latter. (Also, not especially nice is using an example like this to explain the different types of diabetes, because it is not relevant to the discussion and only adds stigma to type 2 diabetes. Don’t do that!)

As I read the tweets responding to this tired ‘joke’ from people in the diabetes community, what I saw was not people urging the TV host to be nice. It was for him to understand the seriousness of diabetes, to stop shaming people with diabetes, to not fuel the misconception that sugar causes diabetes, to not make diabetes a punchline.

People make diabetes ‘jokes’ because the words and language used around diabetes for years has given them permission to do so. And with that, attitudes were formed and the construct that diabetes is self-inflicted and free game for comedians and TV hosts became accepted.

And that’s where we are now and what we have to undo.

Perhaps part of the problem is that we don’t have an ‘ist’ or ‘ism’ word that we can attach to the language matters movement. We understand that when we challenge racist or sexist conduct, we are not asking people to simply ‘be nice’. We are trying to make a culture shift away from such damaging attitudes and to change behaviours. When I call out a bloke for making a sexist comment, I’m asking him to reconsider the way he thinks about women, change his behaviour and be respectful. I’m not asking him to ‘be nice’. I’m asking him to stop being sexist.

When someone makes a comment about someone based on the colour of their skin or the country they were born, we don’t dismiss it as them not being nice. We (rightly) expect them to stop that rhetoric because it is wrong and no acceptable.

So, I’m making up a word (and I hate made up words…). If you use words and language that judges, shames, blames, and stigmatises people with diabetes, you are being diabetesist. Diabetesism is not okay and should not be tolerated, and we need to challenge people behaving in that way. Perfectly nice people could still be diabetesist; their attitudes are long-held and seemingly socially acceptable. It’s what they have heard all their lives. We need them to stop doing that.

Here’s the thing: I don’t actually consider myself as being a particularly nice person a lot of the time. Nice people are agreeable, and don’t challenge others or their ideas; they accept them. They don’t call people out on Twitter. They’re not the person who rocks the boat. I am the boat rocker, and I do that because I believe that there are institutional, systematic problems that need to be changed in diabetes and diabetes care, and one of those is the way that the language used around diabetes.

So, back to where this all began and this tweet. I agree that berating HCPs is not the way to get the message through. #LanguageMatters is not only looking at HCPs attitudes and behaviours, anyway. My strongest criticism has been aimed squarely at the media and industry. I also believe that it works best when all stakeholders are involved.

But while I accept that there are different approaches, I don’t accept – and really don’t appreciate – that all the work, the research, the education and the efforts about this issue can be distilled into the concept of good manners and niceness.

I also believe in taking a harder line. That doesn’t mean haranguing or being aggressive. But it does mean understanding that there is a (real or perceived) power imbalance in healthcare, and those with influence should be held to account when it comes to the way they speak to and about people with diabetes. It means calling out HCPs and researchers when they stand up at conferences use language that hurts us by reinforcing wrong attitudes; correcting the media when they get it wrong, and calling out industry when their marketing teams misfire.

And I also believe that this is personal. Living with diabetes is not a bit of ‘fun stuff’ or something that we chose to do. It is incredibly personal for me and every single person with diabetes who has been made to feel not enough, or blamed or shamed, or judged or mocked due to beliefs about diabetes – beliefs that have been formed and accepted over time because of the language and attitudes about our health condition. The concepts of non-compliance, of good and bad numbers, of ‘bringing this on myself’, of ‘diabetes on a plate’, of grading A1cs have all been thrown at me, and affected me in ways, varying from feeling a little annoyed right through to deciding diabetes care was an exercise in futility so I was simply not going to bother anymore.

That is why #LanguageMatters and I would ask – and urge – everyone working in this space to listen to those of us living with diabetes, hear us. And sit down and learn. Sure, we can all be nice, because being nice is a good thing to aim for (and I promise that I will endeavour to do better there, too), but accept that language matters much, much, much more than that.

More on this

Read Melinda Seed’s post on this very issue.

My Twitter thread.

The #DOC has brought some brilliant people into my life, and Melissa Lee is one of the most brilliant. I adore her. I adore her humour, her political sass, her intelligence, and she gets me thinking with a lot of the things she shares online. She is SMART, and if there is one thing the world needs right now, it’s more smart people. I first met Melissa when she was leading the Diabetes Hands Foundation, and her compassion and advocacy skills won me over.

She is also extraordinarily talented. She sings like an angel and used to be a singing teacher. Perhaps our shared past-music teacher lives have also drawn us to each other.

Melissa has been doing her #DParodies for a number of years now, taking well-known songs and giving them a diabetes work over. They can be hilarious or sometimes a little heartbreaking. But they are always clever and thought-provoking.

Today, she unleashed a new song. I knew this one was coming; I knew what it was about. And I knew she was going to nail it.

With this parody, Melissa has addressed an issue that is close to my heart: food shaming in the diabetes community. I have written a lot about this, (here, here, here…), most recently here after I was fat shamed following a TV interview I did for work during National Diabetes Week.

I know that not everyone who follows a certain eating plan becomes militant, but I can say with all honesty that the only place where I have seen a coordinated approach to shaming people for choosing to eat a certain food group is from particularly aggressive corners within the LCHF community. Don’t believe me? Start with this tweet. Still don’t believe me? Read the comments on YouTube below Melissa’s video. By the way – the comments are all unoriginal and boring: Suggesting that someone is eating their way to a litany of self-inflicted diabetes complications, or is in the pocket of Big Food for daring to eat a cupcake, or calling someone fat? Tick, tick, tick.

I don’t care what you eat. Really. Your diabetes; your rules. But I do care if you are cruel, stigmatising or just nasty. Melissa is suggesting that people who do those sorts of things calm down. And I couldn’t agree more.

Firstly, let me start this piece by saying #NotAllHealthProfessionals. There: I got it out there upfront because I know that what follows is likely to garner response from a shedload of healthcare professionals that they would never do the sort of crap I am about to write about.

Sure – I know that there are lots of great ones out there. I get that there are champions for our cause; HCPs who genuinely walk alongside us and truly listen to what we say and what we need.

But here’s the thing. It takes more than that; more than just doing the right thing in your own little world. It takes guts and leadership to take a stand, and it takes standing up to colleagues who are not getting it right. And sadly, even the good ones don’t do that enough.

Last week, I shared a pathetic image from a Facebook page that is, allegedly, a satire site. It seems to be administered by HCPs and most of the comments appear to be from HCPs. (You can see it here if you are on FB. I don’t want to share the image on my blog.)

I shared the image with these words: ‘This isn’t funny. it’s not smart. It’s not clever. Even less funny is that it appears this is a page for and by healthcare professionals. The comments are disgraceful. HCPs are not our allies when they do this sort of shit. Instead, they’re contributing to the distress and shame that many PWD feel.’

The thing that upset me most wasn’t the pitiful attempt at humour. Let’s be honest – there was nothing in there we had not seen before. A million times over. This sort of ‘humour’ is in the DNA of every stigmatising diabetes ‘joke’.

What upset me were the comments that followed. At last count, there were about 1,000 of them, most of them applauding the image. Here’s just a selection from the first few:

‘Brilliant – but no one ever heeds this advice.’ (From a nurse who claims 30 years of nursing experience.)

‘This is how I label things.’ (Pharmacist.)

‘Should be on every diabetes med.’ (Exercise physiologist.)

‘The things you wish you could say to patients without losing your job.’ (Nurse.)

‘Love that!’ (Med student.)

‘Hahahah!’ (Podiatrist.)

‘Legit needs to be on boxes.’ (Nurse.)

‘Sorry…I can’t read that small print on account of my sugary eyes.’ (Doctor.)

‘Hahahah. Great quality labelling.’ (Pharmacy student.)

‘Accurate.’ (Physiotherapist.)

‘I love this so much.’ (Doctor.)

‘Damn, should’ve mentioned patient’s McDonalds intake as consideration for Contrave (a weight loss drug).’ (Doctor.)

‘If only we could write that!’ (Nurse.)

‘Control your diabetes or you’ll lose your feeties.’ (Doctor.)

There were more… a lot more. Predictably, the very few of us who questioned just how this was meant to be amusing were told that we needed to lighten up/see the funny side in it/understand it was satire. Or people doubled down to tell us that we were wrong and then went on to school us with further myths about diabetes. Seriously, these people need to get just a touch of originality and try to come up with a stigmatising meme we’ve not seen several million times already, and then come back at us with inventive comments.

I am willing to bet that pretty much every single one of those HCPs will claim to be all about ‘patient-centred care’. I am sure that they believe that they are truly there for what their ‘patients’ need. If pressed, they would probably say that they would never, ever say something like this in front of a patient – because they care about us so much.

That’s bullshit.

A healthcare professional who is truly there to champion PWD would have called that meme out for every shade of stigma that it is. They would not have shared it amongst their colleagues or wanted to print it out for the tea room (as a couple of people said they had done). They wouldn’t have found it funny; they would have found it offensive, stigmatising and downright wrong. And they would have said that, trying to put a stop to hundreds and hundreds of comments.

And those HCPs who realised that it was a load of bullshit and said nothing? They need to look at themselves too. The standard you walk past is the standard you accept. When you say nothing, you’re implicitly saying that it is okay.

It is not okay.

Who remembers the outrage from HCPs last year when #DoctorsAreDickheads was trending on Twitter? (Here you go: I wrote about it here.) Doctors were outraged, offended and irrate, and urged patients to counter the horror stories that people were sharing with positive stories of their own doctor experiences. And what happened? People – patients – did that. Even I defended my HCP team when I wrote my blog post. And I even prefaced this post with a disclaimer, because I know that some HCPs will read this and be all indignant. If that is your response to this… respectfully, get over yourself!

Because, where are those HCPs now? Where are the doctors getting angry and outraged every.single.time we have to endure another stigmatising, cruel, demoralising and downright wrong ‘joke’ or comment? Where are the HCPs standing up at conferences when a presenter makes some comment about how PWD ‘fake’ our BGL results or ‘forget our meters’ for download or whatever other behaviour gets us a non-compliant mark against our name?

So, here is what I want to say to HCPs – every single one of you.

Please, please be an ally. Stand up for us. Listen to us. Don’t talk over us. Don’t tell us that our experience is wrong or doesn’t matter. Don’t walk by when your colleagues do this sort of crap. Don’t minimise or delegitimise us by saying that it’s ‘just a joke’ or promising us that you wouldn’t do this. Because enough of your colleagues do. (Also, don’t @ me and tell me how much better you are because you are a leader and don’t do this kind of shit or do call it out. That’s great. And thank you. This isn’t about you. But you still can do something.)

We need you to do this for us. Or rather, along with us. Because when we do it alone (and most of the time, it is us doing it alone), we are dismissed as being too emotional or not being able to understand the humour. As much as I wish it was enough for our comments to resonate, it isn’t. So, we need allies. We need you.

It takes courage and leadership. But if you truly, truly want to be there for us for what we need, then you need to step up. Please be an ally. Please.

P.S. There were a couple of HCPs who commented on the FB page that obviously, this meme was about type 2 diabetes and not type 1 diabetes. If you are one of those HCPs who insists on doing things like that, ask yourself just how much you are contributing to the misinformation and stigma about type 2 diabetes. We know that T1D is autoimmune/not preventable, but when you use a broad brush to correct comments about diabetes with ‘You mean T2D‘ you are not really helping. In fact, you’re just adding to the misinformation by suggesting that all T2D is preventable and that is not true. You know that. Do better.

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