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Back when I first started writing and talking about diabetes language matters, it didn’t seem to be all that contentious an issue. I had been following with great interest how this discussion played out among people with diabetes, and it was super clear to me back then that there wasn’t a one size fits all approach or way of thinking. Some people were interested, some couldn’t have cared less. It was accepted that there would be different opinions and attitudes with different people. I know, how completely unexpected, because in every other way, people with diabetes are a tidy, identical, homogenous group who agree on EVERYTHING! #SarcasticFont

Many, many, many years down the track, more and more people are buying into this topic of conversation, which leads me to think that language does, in many ways, matter. To lots of folks.

Which is why it’s frustrating – and problematic – how fixated this discussion can become on specific words. That, I believe, is the problem with #LanguageMatters. 

When I think about why I became so interested in this issue, I’m really clear why it mattered to me. It wasn’t about manners. It certainly wasn’t about suggesting that people with diabetes (that’s my preferred terminology, but you do you!) be told how to speak about the health condition we own. 

To me, it never was about individual words. It was about words, broadly. It was about images used to accompany diabetes discussions. It was about attitudes. It was about behaviour. It was about addressing the image problem that diabetes (still) has. It was about changing the mindset that it’s okay to use diabetes and those of us living with it as a punchline. It was about shifting the public perception about diabetes. It was about people with diabetes not feeling ashamed to do their diabetes tasks in public. It was about elevating our health condition to the same level as other health conditions. It was about people with diabetes being respected. It was about stopping blame and shame and stigma. It was about people with diabetes deciding and directing how their own brand of diabetes would be discussed by those around them. 

It was always about communication as a whole – communicating to and about people with diabetes. 

And yet, with all that in mind, so many online discussions that I see still want to reduce this big body of work to: ‘But I want to call myself a diabetic.’ If someone said that to me, which some people certainly have, my response has been, ‘Okay, cool. You should definitely do that then!’

So why does THIS seem to be the particular tiny, infinitesimal, microscopic, miniscule part of the whole language discussion that some people keep coming back to? 

I’ve started to wonder what are their motives behind focusing on this issue? When I see someone, especially someone who’s been around for a couple of years and who everyone knows has been part of these discussions before, start with the PWD vs diabetic debate, I wonder if they’re trolling. They know it will get a response. They know it’s likely there will be disagreements. There are some super savvy people on social media out there who know that asking this question, or even just mentioning it will get a reaction – every single time – and it might even add to their follower count. I guess that some people think that’s currency. 

But really, all it seems to do is narrow and diminish the broader discussion. These days, when I am asked to give a talk on language and diabetes, I dedicate one slide and about 45 seconds at the beginning of my talk to get the diabetic / PWD issue over and done with, and then focusing on what I want people listening to the presentation to take away with them. 

I don’t know how or when the diabetes #LanguageMatters hashtag started. It wasn’t the name of the first language position statement, but it certainly has been used for a very long time, and been associated with the global movement that has its foundations very firmly rooted in the diabetes community – even before the advent of the DOC, because this discussion has been happening for long before our community moved into online spaces.  

The problem with using #LanguageMatters is that it is too often drawn into being about one tiny part of the whole big issue. But it seems that #LanguageMatters is here to stay with a whole lot of material and dialogue and debate behind it – a lot of which is making a huge difference to the way people feel about their own diabetes. So, what a shame that it so often gets minimised to something that is only one little part of it. What a shame that some people knowingly fuel the fire and the arguments that ensue by bringing up diabetic/PWD again. What a shame that this really important, really BIG issue is reduced to something quite tedious. 

Perhaps we should have gone with #CommunicationMatters to signpost that it wasn’t about specific words. Perhaps we should have gone with #AttitudesMatter to bring in how language adds to attitudes of stigma and blame Perhaps #BehavioursMatters would have addressed how body language and other behaviours can be just as important as verbal language. 

Or perhaps we should have used all of them because, really, #ItAllMatters.

You can read read more on my frustration about this issue in this post (and frequently on my Twitter feed).

Ten years ago was the first time I wrote something about some so-called celebrity making a thoughtless comment about diabetes. That’s right, that piece was written in 2011.

And yesterday, my Twitter feed was lit up with people commenting on some bloke on TV in the UK who made a stigmatising comment about diabetes, because of course that’s what people with unsophisticated senses of humour do at Easter time.

I muted a heap of terms because I couldn’t be bothered reading the replies. Why? Because I’d read them all before. I’d probably written a few of them myself.

I have nothing more to write, because I have written about this countless times. Diabetes bloggers and advocates who have been around the traps for longer than me have written about it countless times. We’ve seen it all before. We’ve said it all before. For ten years I’ve been banging on about it. Welcome to the table if you’re joining in now!

Here is what I wrote in this post, after a cafe named one of their wonderfully decadent desserts ‘diabetes’, because, haha, how funny, no one has EVER made a joke like that before:

‘But there is definitely room for a discussion about why diabetes continues to be seen as fodder for bad jokes, and mindless behaviour like this. Until we get the language about diabetes right, this will continue to happen. Again. And again. And again. That is the discussion I’m interesting in having now.’

I may be done writing critiques of B (C, D, E) – list celebrities being stigmatising jerks about diabetes. But I am not done talking about language. THAT is the issue here. For as long as diabetes is seen as an easy punchline; as long as people with diabetes are seen as an easy target; as long as diabetes is considered a lazy condition that deserves no understanding, this is going to keep on happening.

More? Oh, there’s plenty more…

The time (alleged) comedian Dave Hughes made a joke about diabetes.

The time Jame Oliver called a Coke can diabetes.

The time a cafe named a dessert diabetes.

The time the CrossFit CEO made a stigmatising comment about diabetes.

The time I wrote that #LanguageMatters is not about being nice, which coincided with Paul Hollywood referring to something as diabetes on a plate.

There are a lot of words that get thrown around the diabetes space to describe people involved in advocacy and support. These include (patient) leader, influencer, advocate, supporter… the list goes on. Some people prefer certain terms; others don’t. Some people don’t want to be labelled. 

I had no idea the word ‘advocate’ was a loaded word in some places. I sprinkle it around like glitter – because I see it as a term that typically describes people doing really great things – and not just in diabetes. 

It’s a word I’m comfortable with for myself.

It’s a word that I connected with others when I first started volunteering in diabetes – before I was working in it – because I could see that there were people with diabetes making a real difference to the lives of others with the condition. 

It’s a word that I attach to people standing up, showing up and being counted. I asked on my FB page about the word, and someone said they like it because it not only refers to the person, but also the actions they are taking (thanks for that gem, Cathy). 

But while it’s a word that I feel relaxed with, it doesn’t seem to be sit all that comfortably with other diabetes folks around the globe. (Which is, of course, fine. We can use whatever words we want to describe ourselves and what we do.)

I’m not sure if it is a cultural thing, or if it is just a preference. I’ve learnt that some languages don’t have a word that literally translates to advocate, but someone from Sweden told me she uses the English word, because it most adequately describes what she does. And in some places, people are very reluctant to use the word to describe themselves. After I asked about it, a number of people contacted me privately to say that they would like to use it for themselves, but they are worried about what others may think. Interestingly, they were all from the same part of the world. 

Last month, I was an invited speaker at an event for people with diabetes in South Africa, and I was asked to speak about how the DOC has been a source of support for me in my years with diabetes. The event was titled Diabetes Influencers Summit. Now THAT’S a word I’m NOT comfortable with! I spent the first few minutes of my talk explaining why I’m prickly about the word and how I see what I do as advocacy, not influencing, and that I consider myself an advocate, not an influencer. 

In my mind – and of course this is just my own assessment – influencers are building a brand for themselves, while advocates are more focussed on community. There is NOTHING wrong with building a brand – we all do it to a degree. But the advocates that I met and followed when I first started hanging out in the DOC were the ones that were truly all about community. They’re the ones I engage with now.

I don’t know any advocates who have made a squillion from their advocacy work. I don’t do sponsored posts here (or on any other of my socials). If I have been given product and then choose to write about it, I mention that in my wordy disclosure statements at the end of posts (and frequently throughout them as well), but I have never received money for what I have written, even though I am contacted almost daily with offers. I am a freelance writer, so I get paid to write elsewhere, but that’s my side hustle, writing is my job, and I should be paid for that. 

No one has to call themselves an advocate – because of course that’s fine! – but I am saddened when those of us who do use the word are criticised, or considered to be ‘above our station’. (Ugh – just writing that makes me feel sick. Aussies baulk at class systems.) 

Being an advocate doesn’t mean that I think I speak for others. I have never heard another diabetes advocate share their story with the message that they are representative of everyone. It also doesn’t mean that the issues that are important to me MUST be important to others – or that they’re the most important issues. I like to think that many of those issues that I’ve spent 20 years advocating for – access to healthcare, drugs and technology; PWD being recognised as experts in our care; respect from HCPs; the importance of using language that builds us up, rather than tears us down; working to diminish diabetes stigma; the philosophy of ‘Nothing About Us Without Us’; highlighting the need for more research about women’s health and diabetes – are universally acknowledged as issues that, if addressed and improved, can mean better outcomes for others with diabetes. But, these are my things and #YDA(dvocacy)MV. 

Last week, I attended the Shifting Gears Summit which was coordinated and hosted by the Consumers Health Forum of Australia*, and the word ‘patient leader’ was used a lot. I realised that I was bristling with the term leader, not necessarily because I object to it, but more because I know how others would react if we started using it widely. I wonder why I feel that way. I happily and easily acknowledge many diabetes (and other health condition) advocates as leaders in what they do, knowing that they too may cringe with the label. 

And yet, others working in the healthcare space are considered leaders – and usually, quite rightly so. We recognise HCPs, policy makers, hospital administrators, researchers and industry representatives as leaders in what they do, however the term seems to not be quite so comfortably applied to those of us with lived experience. But surely our experience and our role should be equal when all stakeholders are engaged. Otherwise, are we just there as window dressing? When an HCP offers their opinion on a diabetes issue, it does not necessarily mirror that of all HCPs, and yet no one questions their right to share that opinion. But despite this, they will be identified as leaders in their field. Why is that not also afforded to diabetes advocates?

It is definitely worth noting that I have rarely, if ever, seen, heard or had pushback from the HCPs I’ve worked with at the term advocate, or even leader. In fact, on a number of occasions I have been horribly embarrassed with the words – the very kind words – that have been used to introduce me. I’m always very touched that they see me in that light, but I am horrified at how other people with diabetes might react to their words. Why do some people with diabetes (myself included) want to distance ourselves from these descriptors?

Is it because in most cases people who are doing the sort of work we do are unpaid volunteers? Or is it because the status of the ‘patient’ is considered below that of others working in the healthcare space? Is it because there is no formal qualification needed to become an advocate?

Whatever it is, I don’t think we do ourselves any favours, or any favours in the endeavour to ensure the lived experience voice is considered as important – if not THE most important – in discussions about diabetes. In fact, that sort of rhetoric does nothing more than keep us in our place – that of a measly patient who can do no more than share their own tales of woe. When we say, or are told, ‘You’re only telling your story’, that devalues the contribution of advocates. It’s already hard enough to be heard, but then to be told that our story doesn’t mean much is offensive and harms us. I would never think to tell another PWD that, and it saddens me that others do.

We don’t have to label ourselves in any way we don’t feel comfortable, and we can describe ourselves and what we do in diabetes how we would like. I’ll keep throwing around the word advocate, and use it to describe myself. And continue to elevate the people with diabetes in the community who I see as being advocates, too. 

*DISCLOSURE

I received a scholarship to attend the CHF Shifting Gears Summit after applying through an open submission process. Registration was paid for by CHF. I was not paid to attend.

Click to be taken to a great Twitter discussion about advocacy in the DOC

Every year on International Women’s Day, I write a post about the incredible women in the diabetes world doing remarkable things for the community. I’m going to link to some of them at the end of today’s post because they highlight some truly brilliant women making a difference in the lives of so many, and their stories should be told, and contributions shared. 

But today’s post isn’t about that. Today’s post is more about the way that women in diabetes often get treated. I should point out that a lot of what I’m writing about isn’t unique to diabetes. It’s seen time and time again in healthcare, and in health communities. But my space is the diabetes world, and that’s what I write about, so here goes. 

So-called ‘women’s issues’ continue to be under-represented in research. Those issues and concerns are dismissed and ignored, and women are simply told to ‘deal with it’. Sexual function can be as relevant for women as it is for men with diabetes, and yet, do a search using the words ‘sexual dysfunction and diabetes’ and you’ll need to scroll a long way into the 32,000,000 results before women are mentioned. 

I have sat on panels and been spoken over, and sat in audiences as I’ve watched women be spoken about and over. Last year, I spoke in a session at an international conference and then was the only PWD in the panel discussion at the end of the presentations and the chair (a male HCP) answered all questions directed at me. 

Conference organising committees continue to be majority male, and award lectures seem to be more frequently given by men – and white men at that.

I sat in an online conference last year and was astonished to see that the woman whose contribution to one of the most significant advancements in diabetes tech in recent years was minimised. Thankfully a number of women in the audience corrected the misconception, and then had to deal with having mansplainers tell us all the ways in which we were wrong. (Spoiler: we were not wrong.)

I have heard so many mothers (and sometimes fathers too, but usually mothers) of kids with diabetes tell stories of being dismissed when they took their kid to the GP with symptoms of diabetes. They were told that they were imagining things, and there was no need to investigate further.   

Remember the furore we saw when the IDF dared to focus women for WDD a few years ago? So many fragile egos were hurt because the challenges unique to women were centred in this ONE campaign.  

I’ve been called a girl in meetings (still, at 47 years old), and seen the same happen to other women – women who are professional, qualified, experienced and absolute leaders in their fields.

And then there are the words used to speak to and about when, because of course, I’m going to talk about language. 

I asked about this on my Facebook page the other day and these were some of the words and phrases that women who had called out shitty behaviour from men were called:

Angry. Aggressive. Hysterical. Dramatic. Attention-seeking. Pushy. Loud. Hormonal. Over-sensitive. Too much. Shrill. Strident. Opinionated

We’re told to calm down, moderate our words, and when we dare call out crap, we are gaslit and belittled, and told that we need to chill out.

How often do you see the same language used to describe men when they are calling out crap? It’s more likely they will be identified as brave, assertive, progressive …

In our own diabetes online community, it is fascinating to see how often this happens when women share experiences or lousy experiences, or simply have an opposing view. I have never believed that everyone needs to get along, but look at how comments, subtweets, even direct messages work and you will see the gendered language that is used to scorn and dismiss women. The label of the ‘angry woman’ is alive and well when a woman stands up. For extra credit, the ‘angry old woman’ tag adds some ageism to the sexism.

These words are used to minimise, dismiss and silence our voices. And it works. The number of women I know who have stepped away from support communities because of the way they have been spoken to or about is significant.

I usually like to use this day as a chance to celebrate women, because we deserve to be celebrated. Our contributions to the diabetes world are significant. The diabetes community has been fashioned by amazing women doing amazing things. 

But it has also been shaped by women being silenced, reduced and curtailed. And that also needs to be recognised.

Previous International Women’s Day posts:

2020 – Strident women

2019 – Interweb jumble – the IWD edit

2018 – The women

2017 – Hear me roar

2016 – The F word

(Here it is in pink!)

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’t.do.this.anymore, 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.

By the weekend, after last Friday’s post expressing the terror I felt reading headlines regarding death rates, diabetes and COVID-19, I’d moved from scared and sad to angry. Diabetes reports in the media are always fraught, and this was no exception.

I took to Twitter, because it’s as good a place as any to scream into the void and lighten my chest from what was weighing heavily on it. You can read that thread here. Or you can just keep reading this post. I wrote about the processes that I have been involved in for getting a story about research from the lab/researcher’s desk out into the general sphere.

So today, I am going to address a number of different stakeholder groups with some ideas for your consideration.

To communication and media teams writing media releases about diabetes research:

I know that you want your story in the press. Many of you have KPIs to meet, and measures of success are how frequently you get a headline in a well-known publication. I know that you often are the ones trying to make dry numbers and statistics compelling enough to get the attention of health writers and journalists.

But please, please don’t tell half stories. Don’t only present the scary stuff without an explanation of how/what that means. And when you provide explanatory information in the hope that the journo you’re pitching to will pick up your story and run, don’t revert to lazy, over-simplistic explanations that have the potential to stigmatise people with diabetes.

To health writers and journalists:

You have a tough job. I get that. Pages need to be filled, angles found and content that will grab the attention of a news-hungry public must be written. But remember, if you are writing about diabetes, it is highly likely that a lot of people reading what you write are people affected by diabetes. Your words are personal to us. When you talk about ‘diabetics dying’, we see ourselves or our loved ones. Please write with sympathy and consideration. Don’t use language that stigmatises. Don’t use words that make the people you are writing about feel hopeless or expendable. Don’t forget that we are real people and we are scared. Are your words going to scare us more?

To anyone asked to comment from an ‘expert’ perspective. (I am not referring to PWD asked to comment from a lived-experience perspective here, because no one gets to tell you how to talk about how you are feeling. Tone policing PWD is never okay, especially when it comes to having a chance to explain how your emotional wellbeing is going…)

Thank you for trying to break down what it is that is being discussed into a way that makes sense to the masses. If you are asked to be the expert quoted in a media release, ask to see drafts and the final version of the release before it goes out. Consider how your words can be used in an article. It’s unlikely that you will be called for clarification of what you have said, or to elaborate, so be clear, concise, non-stigmatising and factual. Also, and I say this delicately, this isn’t about you. You are providing commentary from a professional perspective on a news story about the people who this IS about . The fallout may be tough, and the topic may be contentious, people may not like what you say, but when that becomes a focus, the story shifts away from the people who really matter here. I am begging you to not do that.

I am frequently asked to provide comment for media releases, sometimes as a spokesperson for the organisation where I work, other times from a lived experience perspective. I always insist on seeing the final draft of the release. And yes, this has been my practise since I was burnt with a quote I’d approved being used out of context and painting my response in a different light to how it was intended. I also insist on seeing the words that will be used to describe me. For me personally, that means no use of the words such as suffered, diabetic, victim, but as PWD we can choose those words to suit ourselves.

I am also more than happy to be the bolshy advocate who clearly lays out my expectations about overall language used. I send out language position statements. I know that comms, media and writers don’t always appreciate this, but I don’t really care. It’s my health condition they are writing about, and the readers will not be as nuanced about those affected with diabetes. If they see something, they take it at face value. I want that value to be accurate and non-judgemental!

And finally, a point on language (because, of course I am going here). Many pieces that have been written in the last week have dehumanised diabetes, and people with diabetes.

Words such as fatalities, patients, sufferers, diabetics, ‘the dead’ have all been used to describe the same thing: people with diabetes who have lost their lives. Break that down even further and more simplistically to this: PEOPLE. People who had friends and family and colleagues and pets. People who had lives and loves and who meant something to others and to themselves.

I refuse to reduce the #LanguageMatters movement to the diabetic/person with diabetes debate, but here…here I think it is actually critical. Because perhaps if ‘people with diabetes’ was used by the media (as language position statements around the world suggest), it might be a little more difficult to divorce from the idea that those numbers, those data, those stats being written about are actually about PEOPLE!  (Of course, PWD – call yourself whatever you want. Because: your diabetes, your rules and #LanguageMatters to us in different ways.)

People. That’s the starting, middle and end point here. Every single person with diabetes deserves to be written and spoken about in a way that is respectful. Those who have lost their lives to this terrible virus shouldn’t be reduced to numbers. Data and statistics are important in helping us understand what is going on and how to shape our response, but not at the expense of the people…

Sometimes it feels as though discussions in the diabetes are seasonal. Like clockwork, we see the same conversations happen at the same times. Without missing a beat, almost as soon as a scientific conference is over, someone will comment about how difficult it is for PWD to get to conferences (true, however this year, #dedoc° voices could have assisted a number of the people who were stating that), and then there are discussions about disclosure by PWD who are fortunate to attend, even though pretty much every advocate I know who attends these sorts of things does a stellar job of disclosing. 

And of course, the nature of the first big meeting of the year, ATTD, means that there inevitably will be noise about the gap in technology access. And you bet this is a discussion that we need to be having on regular rotation. 

After attending my first ATTD, I wrote a piece about the complete and utter dichotomy of being at a conference that was only talking about the latest and greatest in technology while, at the same time, whilst the community was in the midst of its usual Spare a Rose month of fundraising. I struggled to balance the idea that we were talking about automated insulin delivery at the same time as urging donations so people could just get insulin!

Today, I’m revisiting the piece I wrote after last year’s ATTD, where my worlds of diabetes technology and language matters merged, and combined this with the over-representation of those at the super-dooper-tech-y end of the diabetes technology spectrum. (‘Super-dooper-tech-y’ is, obviously, a very technical term.)

I don’t for a moment think that meetings with a strong tech focus should end, or that those who are innovators in technologies should take a seat and let others speak. I don’t believe that at all. I will be forever grateful to the pioneers who continue to push the envelope and make things better for people with diabetes. But I do think that we need to ensure that there is equal attention to those who – by choice or because of their circumstances – are not walking around with an algorithm driving their diabetes.

If we truly believe that all diabetes stories matter, then we need to hear from people doing diabetes in every way possible. Perhaps if we make more of an effort to find and hear those stories, we will stop minimising our experiences, and starr seeing that whatever we are managing to do is truly enough…

DISCLOSURE 1 (for ATTD 2020) 

I was an invited speaker at #ATTD2020, and my registration was covered by the conference organising committee. My airfare and part of my accommodation to attend ATTD was covered by Lilly Diabetes so that I could participate in the DOCLab advisory group meeting which took place on Friday, Saturday and Sunday. Other accommodation was covered by DedocLabs (I am an advisor for the #dedoc° voices program) and Novo Nordisk (I am a member of DEEP). I have not been asked to write or speak about any of the activities I attended, or anything I have seen at the conference. 


We all do a good job at undermining ourselves at times. We use a four letter word that diminishes what we are doing, and limits the value of our experience and expertise. That four letter word is ‘just’.

In diabetes, we hear it all the time: ‘Oh, I just have type 2 diabetes’ as though it is insignificant and doesn’t have any challenges. ‘I’ve lived with diabetes for just a couple of years’ because we think there is only currency in decades of living with the condition, when really any length of time with diabetes is meaningful.

And we are all about minimising our experience when it comes to the treatment of our diabetes. ‘just use diet and exercise to manage my type 2 diabetes’ or ‘I’m just on tablets’ or ‘I’m just on injections twice a day’ or ‘I’m just on MDI’. The list goes on and on. And on.

I realised just how ridiculous we have become with this when I heard myself, during a conversation with a fellow Looper, ‘Oh, I just use Loop’. (More on that later…)

At the Ascensia Social Media Summit at ATTD we spoke about this, specifically how there is almost a stigma within the diabetes for those seen to not be using the shiniest and brightest and newest of technologies. It seems that some people almost feel embarrassed if they are not constantly updating their technology toolkit with the most recently launched product.

The idea that anything that we are using today is ‘yesterday’s technology’ is wrong. Blood glucose monitoring can’t be ‘yesterday’s tech’ if it is what most people are using to track their glucose. And syringes and pens can’t be considered the ‘old way to deliver insulin’ when that is how the vast, vast majority of inulin-requiring people with diabetes get insulin into their bodies. Plus, every single one of us using a pump must be able to deliver insulin this way because machines break.

Somewhere in discussions about our treatment technologies, we seem to have forgotten that, actually, not everyone wants to be using the latest kit. And that is okay. There is a spectrum of diabetes technology, and as long as we are on it somewhere and managing our diabetes the way that works best for us, then elephant stamps all around!

There is clearly an over-representation of people at one end of that spectrum dominating on and off line conversations. Spend a couple of hours in a diabetes Facebook group and it would be a reasonable assumption that most people are wearing pumps and CGM. But that’s not true.

And it could appear that DIYAPS is the way to go for most people with T1D, when the fact is that numbers are relatively low. It’s hard to estimate exactly, but there may be somewhere between 2,000 and 3,000 worldwide how have ‘built their own pancreas’. That is just a drop in the type 1 diabetes ocean.

It’s fantastic for those of us interested in this technology to be able to (virtually) congregate and talk amongst ourselves. I learn so much from my peers in these groups – just as I have with all aspects of life with diabetes. The lived experience continues to trump any other way of learning about diabetes.

Of course, that doesn’t mean that we shouldn’t be talking about technology used by limited numbers. Of course we should. We want others to know about it so they can make an informed choice about whether it may be right for them.  We want our HCPs to know about it and to support those of us using all sorts of technologies and treatments.

Where it becomes problematic is when there is the misconception that this is the norm. Or when those not using the newest technology feel that they are wilfully doing diabetes the ‘old way’. It’s unfair to think for a moment that those who are not using the tech ‘don’t care’ enough about themselves – especially when decisions are made based on a very good understanding of what is available and what they have decided works best for them.

So, back to my ‘Oh, I just use Loop’ comment. It was directed to someone far more technologically advanced than me; someone who runs all sorts of other programs alongside their DIYAPS. They generate lots of reports and make lots of changes and seem to have far more bells and whistles than I even knew were available.

I nodded as they told me all they were doing and then, when they asked me how I manage my diabetes, I answered that I just use Loop. I heard myself saying it and stopped and corrected myself. ‘I meanI use Loop. It works for me. Perfectly.’

We don’t need to make excuses for doing diabetes our own way. If we truly have choice (which I know is not always the case), and we have made the choice based on what we believe to be the best possible treatment and technology for us at that moment, then surely that’s a great thing. We shouldn’t ever be made to feel less committed to our own health and wellbeing. That’s not how it works.

DISLCOSURE 2 (for ATTD 2019)

I was invited by Ascensia to co-chair the Diabetes Social Media Summit at ATTD (#ATTDDSMS). I did not receive any payment or in-kind support from them for accepting their invitation. I have co-written a piece for the blog, however this was not edited (apart from inevitable jet-lag-induced typos) and all words are those of mine and the piece’s co-author. You can read that piece here.  

My head is firmly in the language space at the moment, thanks to a big piece of work I’m involved in. So, I’m sharing this post from last year. I remember being frustrated during a session at ATTD last year where a roomful of diabetes advocates were acknowledging how stigmatising and damaging language could be – and equally, how positive and positively powerful it could be, too. My frustration was because despite some pretty insightful tweets going out from people at the event I was in, the online discussion pivoted it all to being about the diabetic/people with diabetes debate (despite this NOT even being discussed in the session), and then how some people with diabetes don’t even care about the words used. 

So, twelve months on from first publishing this post, some people do occasionally call me Blossom. I’m okay with that. It’s my decision. And as a person with diabetes I get to decide how I talk about diabetes, just as every other person with diabetes can. I’m pretty sure that’s been my personal opinion about diabetes language matters for more than decade now: it’s our diabetes. We get to talk about it however we want. 


These days, it’s impossible to be at a diabetes conference and not have at least one conversation somewhere about language. Sometimes there are sessions dedicated to the topic on the program, but that wasn’t the case at ATTD a couple of weeks ago – a conference solely devoted to advancements in diabetes technology and treatments.

But despite there not being a session about language, it was still a hot topic. My eagle eye was trained when walking through the exhibition centre for examples where diabetes is misrepresented or the language used stigmatises people living with the condition. And in sessions, I immediately heard terms that suggested that we are misbehaving because the results of treatments aren’t living up to their promise. (A new one: I heard the statement ‘People with diabetes on <therapy> were not performing as expected’ which now makes me think that we are being trained, watched and judged by pageant mums/moms.)

At the Ascensia Diabetes Social Media Summit (more on that another day), there was a discussion about language and diabetes-related complications. This event was a follow on from the one we had at the Australia Diabetes Social Media Summit, and took the initial conversations and expanded it with a new group of PWDs.

Once again, as the discussion unfolded, it was clear to see that the PWD in the room all had experiences where the language they were faced with had impacted negatively and positively. One person commented that early on in their diagnosis, a health professional had addressed diabetes-related complications by saying ‘If you are diagnosed with a diabetes-related complication it will not have been your fault.’ What an empowering way to begin the discussion about complications, care and risk reduction!

I’ve been talking about language for a number of years. Some may call me a one trick pony and, honestly, that’s fine. My appetite for the subject matter has not diminished one bit despite more than a decade of speaking and writing about why language is so important and holds such power.

Language is not a one dimensional issue. Additionally it does not necessarily have a ‘right way’ to do it – especially when looking at it from the perspective of the person living with diabetes. The work I have been involved in has never been about policing the words used by people with diabetes, but rather how words used by others affect us.

It’s why the piece Grumps and I wrote for BMJ  was important – it targeted healthcare professionals, explaining to them why the words and language used around diabetes-related complications needs to not make us feel hopeless. Because that is what can happen and when we feel that way, it is all too easy for diabetes to seem just too big and too hard and too much.

I have frequently written about how diabetes can become so overwhelming, that it can leave us unable to attend to even the most basic and mundane of diabetes management tasks. I myself have been paralysed by the detail and demands of this health condition. I understand that there are times when a conversation about language is not possible, because, quite frankly, there is a lot more to deal with. I know that there have been moments when even though I can hear judgement and blame in the words being directed at me, all I want to do is find a way out of what feels like a hole. I’ve heard others say that they have felt harshly treated by HCPs, but simply didn’t have the capacity to try to deal with that because there were other things higher up on the list.

And I am sure that there are people who simply wouldn’t even know where to begin if the words and language being directed at them were disempowering and negative.

But that is exactly why language matters. It is for the people in those situations – for me when I was in that situation – that we need to get the way we communicate about diabetes right.

I am so sick of people trying to delegitimise the language discussion, or, even worse, reduce it to something that is insignificant. It frustrates me when the discussion returns again and again and again to the diabetic/PWD debate. As I said at the Ascenisa event at ATTD when we were discussing the annoying way some try to redirect meaningful discussion back to this single issue: ‘You can call me Blossom for all I care, language is about far more than this.’

And I think that while it is critical that we acknowledge that sometimes the language issue isn’t going to be a priority for some (by choice or otherwise), it seems unfair – and a little counter-intuitive – to diminish its importance, or criticise those of us trying to keep it on the agenda and actually do something about it.

(Click for original tweet)

DISLCOSURE

I attended the 2019 ATTD conference in Berlin. My airfare and part of my accommodation was covered by DOCLab (I attended an advisory group meeting for DOCLab), and other nights’ accommodation was covered by Roche Global (I attended the Roche Blogger MeetUp). While my travel and accommodation costs have been covered, my words remain all my own and I have not been asked by DOCLab or Roche Global to write about my attendance at their events or any other aspect of the conference. 

I wrote a post a while ago called ‘You Do You’, (and revisited and expanded on it here). It’s where I wrote about how everyone should have the freedom to do diabetes whichever way they see fit. I’m pro-choice in all aspects of life*, especially when it comes to PWD choosing their own management tools.

And I think that people with diabetes should have the choice to BE the people we need to be. And the people we are. I touched on this on my post on Monday when I spoke about how I felt intimidated online because my opinions and thoughts, and the way I addressed issues, were not everyone’s cup of tea. I felt that I was being called out for being myself. And that wasn’t okay.

No two people with diabetes are the same; no two people with diabetes will have precisely the same management ideas and preferences, and no two people with diabetes will react and respond to situations in exactly the same way.

THAT IS OKAY.

Diabetes is messy, frustrating, weird, annoying, amusing (rarely, but sometimes), scary, boring and a whole lot of other adjectives. And how we react and respond to it is our own business and no one else’s. You BE you, because you have the right to do that.

You have the right to be as loud or as quiet as you want.

You have the right to be as bitter and angry as you need to be in the moment.

You have the right to celebrate and be joyful about your diabetes.

You have the right to call out things that upset you just as much as you have the right to commend the things that make you satisfied.

You have the right to step away from groups, situations, people who upset you.

You have the right to disagree with others. Having an opposing view does not mean that you are attacking another person.

You have the right to have an opinion on what you see in the world of diabetes – even if it is happening on the other side of the world. I was incredulous when it was suggested that I shouldn’t question something happening in a healthcare system of which we are not a part. (I may not use the healthcare system in the US or the UK or Italy or anywhere other than Australia, but I am allowed to comment on what I see being done in those places.)

You have the right to be passionate and not be told that is a character flaw.

You have the right to be emotional because diabetes is real in a way that only makes sense to those of us who are living with it or have a loved one living with it. I don’t know how to take the emotion out of this, so you bet I will be emotional at times. I don’t get to clock off at the end of the work day and not think about it.

You have the right to use the words and language that works for you when talking about your own diabetes and if anyone tells you that #LanguageMatters is actually preventing PWD from doing that, tell them to fuck right off. It’s not. It never was. It never will be, and anyone who says it is has missed the point of the whole movement.

You have the right to use the word ‘fuck’ or whatever else you want to use. Profanity helps some people and we shouldn’t be told to wash out our mouths if others don’t like us using those words. (Sorry, dad.)

You have the right to be the sort of advocate you want to be. Or to not be an advocate.

You have the right to share your experiences – even the ones that don’t shine a particularly positive light on health systems or HCPs. No one – NO ONE – should silence us when we turn to our peers to seek support, or talk about what is going on in our diabetes lives.

You have the freedom to talk about your own diabetes, especially in the diabetes online community which we created for this very reason – to be able to share our experiences, learn from each other, support our peers and build each other up.

So, this? This is me being me. This is me standing up and not going quietly. This is me saying that I will be the person with diabetes I need to be, because it’s the only way I can be true to myself and true to my community.

*Except vaccinations. I don’t believe in choice there.

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