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The last time I was in Stockholm was seven years ago for the 2015 EASD Conference. This year, as I walked to the conference centre from the train, everything about the venue flooded back. ‘Here we go again,’ I thought. Except this time was different.

I wrote this about #EASD2015:

‘There is much mention of the ‘patient perspective’ and on Monday there was an entire symposium dedicated to it. Unfortunately, there wasn’t an actual ‘patient’ on the panel, which surely is weird...But despite the limited presence of PWD in the official programme, there are a lot of satellite events and activities taking place.’

One of those satellite activities was the first ever #docday°. It was in a musty, overheated, overcrowded back room of a co-working cafe, and it brought together a rabble of diabetes advocates from around the world who had somehow made their way to EASD. I think most of us were there with Roche or Johnson and Johnson for one of their blogger events.

But #docday° was different. This one was completely about and by people with diabetes, showcasing community and peer support. People shared their advocacy efforts and what they were doing in their own networks to support people with diabetes, and shared ideas about how others could do the same. Despite being all about diabetes, we were not welcome as a group at the biggest diabetes conference in Europe.

Fast forward seven years to this week, and the same spirit from the first #docday° event was visible. But this time, it was on stage as part of the scientific program at the conference. The #dedoc° Symposium was on the first day of EASD and it set a tone of inclusion and collaboration, making a very clear point that people with diabetes have a rightful place here, at professional conferences.

Adding to the #dedoc° symposium were the #dedoc° voices – diabetes advocates from across the world – participating fully in the conference. This is the largest scholarship program in the world for diabetes advocates and they made sure they were seen and heard! Everywhere! You only needed to walk the corridors of the conference to see the voices collaborating, not only with each other, but with health professionals, researchers and industry. Social media coverage of the EASD is dominated by the constant stream of ‘reporting back’. And almost evert single health professional I spoke with at the conference knew about #dedoc° and supported our very clear mission of #NothingAboutUsWithoutUs. How amazing is that?!

#dedoc° is all about inclusion. That’s why we can, hand on heart, say that we welcome advocates from around the world to become a #dedoc° voice. But it’s more than that. Our events are open to everyone, including our symposia at diabetes conferences. At EASD, our session was the only one that was live streamed to everyone and anyone via our socials channels. No one needed a costly registration to get inside the Stockholsmassan or another way in. Everyone could see Andrea Limbourg speak about some incredible work from advocates in Indonesia, France and Ireland, and Jeff Hitchcock explain how Children with Diabetes managed to keep supporting families of kids with diabetes throughout COVID, and Tom Dean share details of the brilliant #DiabetesChat and how he has embraced the idea of providing a truly welcoming platform for diabetes friends from around the world to gather on Twitter Spaces for a weekly chat. And Bastian Hauck tell the story of that overheated room for the first #docday° and how what happened on that afternoon planted a seed for a global movement of people with diabetes. #dedoc° provides a platform to elevate others. It’s a privilege to be part of it. 

If you missed the #dedoc° symposium at EASD, here it is!

Disclosure

My travel and accommodation were covered by #dedoc°, where I am employed as Head of Advocacy. Thanks to EASD for the press pass.

How are two separate Twitter incidents in the DOC related when one was started after someone without diabetes made some pretty horrid comments about diabetes and the other was a conversation diminishing the whole language matters movement to something far less significant and important than what it is truly about.  

Let’s examine the two. 

EXHIBIT A

Sometime over the weekend, someone I’d never heard of came out with some pretty stigmatising commentary about diabetes. This person doesn’t have diabetes. But hey – joking about diabetes is perfectly okay because, why not? Everyone else does it. Jump on the bandwagon!

She deleted her original tweet after several folks with diabetes pointed out just how and why she was wrong. And also, how stigmatising she was being.

In lands where all is good and happy, that would have been the end of it. We would have moved on, lived happily for a bit, until the next person decided to use diabetes as a punchline.

But no. She decided to double down and keep going. It was all bizarre and so out of touch with what the reality of diabetes is, but perhaps the most bizarre and startling of all was her declaration that there is no stigma associated with diabetes. Well, knock me down with a feather because I’m pretty sure that not only is diabetes stigma very real, but I’ve been working on different projects addressing this stigma for well over a decade now. 

EXHIBIT B

At the same time this mess was happening, there was a discussion by others in the DOC about being called a person with diabetes versus being called (a) diabetic. I’m pretty sure it was a new conversation, but it may have been the same one that played out last month. And the month before that, and a dozen times last year. Honestly, to me, this conversation is the very definition of bashing my head against a brick wall. If you’ve played in the DOC Twitter playground you would have seen it. It goes something like this:

‘I want to be called diabetic.’

‘I don’t care what others say, I like person with diabetes.’

‘Why should I be told what to call myself?’ 

‘I am more than my diabetes which is why I like PWD.’

‘My diabetes does define me in some ways, which is why I like diabetic.’ 

(And a million variations on this. Rinse. Repeat.)

I have no idea why it keeps happening, because I’m pretty sure that at no time has anyone said that people with diabetes should align their language with guidance or position statements to do with language. I’m also pretty sure that at no point in those statements does it say that people with diabetes/diabetics (whatever floats your boat) must refer to themselves in a certain way. And it’s always been pretty clear that those adjacent to (but not living with) diabetes should be guided by what those with lived experience want.

AND it’s also been pointed out countless times that it’s not about single words. It’s about changing attitudes and behaviours and addressing the misconceptions about diabetes. And yet, for some, it keeps coming back to this binary discussion that fails to advance any thinking, or change anything at all. 

Is there a great discussion to be had about person-first versus identity-first language? Absolutely. And looking at long-term discussions in the community there are some truly fascinating insights about how language has changed and how people have changed with it. But does it serve anyone to continue with the untrue rhetoric that people interested in language are forcing people with diabetes / diabetics (your choice!) to think one way? Nope. Not at all. It’s untrue, and completely disingenuous. 

These two seemingly separate situations are connected. And that is completely apparent to people who are able to step back and step above the PWD / diabetic thing. People who know nothing about diabetes keep punching down because they think diabetes is fair game. And people with diabetes are the ones who are left to deal with these stigmatising and nasty attitudes.

I woke this morning to this tweet from Partha Kar. 

I was grateful for the tag here because the frustration Partha has expressed mirrors the frustration I am feeling on the other side of the world. 

I don’t know why this keeps coming up, I really don’t. I honestly do think that most people understand that we talk language in relation to stigma and to discrimination and to access. That was how it was addressed at the WHO diabetes focus groups earlier this year. That is how it was addressed at the #dedoc° symposium at ATTD. It is how the discussion flowed in last year’s Global Diabetes Language Matters Summit. Most understand that these issues are far more pressing.

If people want to keep banging a drum about the diabetes versus diabetic thing, that’s fine. But I reckon that many of us have moved well beyond that now as we seek to address ways to change the way people think and behave about diabetes so that we stop being the butt of jokes or collateral of people punching down on Twitter. 

This morning on ABC Melbourne’s Conversation Hour, the topic was how people are using the internet to self-diagnose mental health conditions using TikTok. Apparently, HCPs are seeing more people claiming to have undiagnosed mental health conditions based on videos they’ve seen on the app. 

The question being posed in the discussion was this: Are Dr Google and TikTok helping raise awareness of mental health conditions or misleading millions of viewers?

Oh’, I thought. ‘We’re having this conversation. AGAIN’, as the hosts were engaged in a bit of pearl clutching and assumption-making. I couldn’t help but roll my eyes at the suspicion and cynicism I was hearing. Sure. It might be a different health condition and a different social media platform, but haven’t we been doing this for years? For DECADES?

Yes. Yes, we have. 

The gist of the discussion today was questioning just how safe and sensible it is for people to use TikTok videos as a basis of self-diagnosing ADHD and other mental health conditions. The people in these videos are sharing their experiences and their symptoms, and others are recognising what they see. As a result, increasing numbers of people are heading off to their GP or a psychologist in the belief they have ADHD. Are these videos a good thing? Or is it misleading and dangerous? 

There were stories of lived experience – people sharing how they had seen something on social media and used that as the springboard to find answers to health questions they have. And others explaining how difficult it had been to get help in the first place, often after having been dismissed for years. 

Social media doesn’t exist in a vacuum. Even if someone does self-diagnose – correctly or incorrectly – they still need to see a healthcare professional to find the right treatment and care. That’s certainly the case when it comes to diabetes. So much of what I have learnt about different treatments or devices has come directly from the community, but in almost all cases, I then need to see a HCP to actually access that new therapy. I can’t write myself a prescription if I want to try a new insulin. In most cases, new tech also needs a HCP sign off, especially if you want to access subsidy programs. 

I’ve come to learn that a good healthcare professional is one who considers Dr Google a colleague rather than a threat. Those who grimace and dismiss someone who walks into their office with the announcement ‘I’ve been googling’ is really just admitting that they believe they are still the oracle of all information; information to be disseminated when they decide it’s time and in the way they believe is right for the individual. 

We have moved on from that. 

And surely we have moved on from the idea that social media is evil and highly distrustful. I’ve been writing and speaking about this for over ten years. In fact, in 2013, I wrote this in a post‘The diabetes social media world does not need to be scary and regarded with suspicion. The role of HCPs is not under threat because PWD are using social media – that’s not what it’s for. It is just the 2.0 version of peer support.’

I so wished that the discussion I listened to this morning had started with a different framing. Instead of highlighting how social media in healthcare could be problematic, they could have emphasised just how empowering and positive it can be for people to recognise themselves on social media. How seeing those stories and hearing those experiences normalise what we see in ourselves, and how they can help us find the right words for what it is that we have been thinking and direction for what to do next. 

It’s not social media and online health discussions that are going to make HCPs redundant. Rather, it’s their refusal to understand just how important and useful these sorts of communications and communities can be. In a post in2016 I referred to it all as a ‘modern day kitchen table’. Sure that kitchen table now looks like a TikTok video, a Twitter discussion or an Instagram reel. But learning from others living similar lives isn’t new. And neither is searching for answers using something like Dr Google. It’s sustaining. And for so many, essential.

Throughout ATTD I got to repeatedly tell an origin story that led us to this year’s #dedoc° symposium. I’ve told the story here before, but I’m going to again for anyone new, or anyone who is after a refresher.

It’s 2015 and EASD in Stockholm. A group of people with diabetes are crowded together in the overheated backroom of a cafe in the centre of the city. Organising and leading this catch up is Bastian Hauck who, just a few years earlier, brought people from the german-based diabetes community together online (in tweet chats) and for in person events. His idea here was that anyone with diabetes, or connected to the conference, from anywhere in the world, could pop in and share what they were up to that was benefitting their corner of the diabetes world. I’ll add that this was a slightly turbulent time in some parts of the DOC in Europe. Local online communities were feeling the effects of some bitter rifts. #docday° wasn’t about that, and it wasn’t about where you were from either. It was about providing a platform for people with diabetes to network and share and give and get support.

And that’s exactly what happened. Honestly, I can’t remember all that much of what was spoken about. I do remember diabetes advocate from Sweden, Josephine, unabashedly stripping down to her underwear to show off the latest AnnaPS designs – a range of clothing created especially to comfortably and conveniently house diabetes devices. It won’t come as a surprise to many people that I spoke about language and communication, and the work Diabetes Australia was doing in this space and how it was the diabetes community that was helping spread the word.

I also remember the cardamom buns speckled with sugar pearls, but this is not relevant to the story, and purely serving as a reminder to find a recipe and make some.

So there we were, far away from the actual conference (because most of the advocates who were there didn’t have registration badges to get in), and very separate from where the HCPs were talking about … well … talking about us.

Twelve months later EASD moved to Munich. This time, Bastian had managed to negotiate with the event organisers for a room at the conference centre. Most of the advocates who were there for other satellite events had secured registrations badges, and could easily access all spaces. Now, instead of needing to schlep across town to meet, we had a dedicated space for a couple of hours. It also means that HCPs could pop into the event in between sessions. And a few did!

This has been the model for #docday° at EASD and, more recently, ATTD as well. The meetups were held at the conference centre and each time the number of HCPs would grow. It worked! Until, of course COVID threw a spanner in all the diabetes conference works. And so, we moved online to virtual gatherings which turned out to be quite amazing as it opened up the floor to a lot of advocates who ordinarily might not be able to access the meetings in Europe.

And that brings us to this year. The first large international diabetes conference was back on – after a couple of reschedules and location changes. And with it would, of course, be the global #dedoc° community, but this time, rather than a satellite or adjacent session, it would be part of the scientific program. There on the website was the first ever #dedoc° symposium. This was (is!) HUGE! It marks a real change in how and where people with diabetes, our stories and our position is considered at what has in the past been the domain of health professionals and researchers.

When you live by the motto ‘Nothing about us without us’ this is a very comfortable place to be. Bastian and the #dedoc° team and supporters had moved the needle, and shown that people with diabetes can be incorporated into these conferences with ease. The program for the session was determined by what have been key discussions in the diabetes community for some time: access, stigma and DIY technologies. And guess what? Those very topics were also mentioned by HCPs in other sessions.

There have been well over a dozen #docday° events now. There has been conversation after conversation after conversation about how to better include people with diabetes in these sorts of events in a meaningful way. There has been community working together to make it happen. And here we are.

For the record, the room was full to overflowing. And the vast majority of the people there were not people with diabetes. Healthcare professionals and researchers made the conscious decision to walk into Hall 118 at 3pm on Wednesday 27 April to hear from the diabetes community; to learn from the diabetes community.

If you missed it, here it is! The other amazing thing about this Symposium was that, unlike all other sessions, it wasn’t only open to people who had registered for ATTD. It was live streamed across #dedoc° socials and is available now for anyone to watch on demand. So, watch now! It was such an honour to be asked to moderate this session and to be able to present the three incredibly speakers from the diabetes community. Right where they – where we – belong.

DISCLOSURE

My flights and accommodation have been covered by #dedoc°, where I have been an advisor for a number of years, and am now working with them as Head of Advocacy. 

Thanks to ATTD for providing me with a press pass to attend the conference.

I frequently say that these days, I do hardly anything when it comes to diabetes. I credit the technology behind LOOP for making the last four-and-a-half years of diabetes a lot less labour intensive and emotionally draining than the nineteen-and-a-half years that came before. 

It’s true. Justin Walker’s assessment that his DIYAPS has given him back an hour a day rings true. (He said that in a presentation at Diabetes Mine’s DData back in 2018.)

The risk that comes with speaking about the benefits of amazing newer tech or drugs is that we, unintentionally, start to minimise what we still must do. I think in our eagerness to talk about how much better things are – and they often are markedly better – we lose the thread of the work we still put in. But our personal stories are just that, and we should speak about our experiences and the direct effect tech has in a way that feels authentic and true to us.

And that’s why accuracy in reporting beyond those personal accounts is important. Critical even. 

Yesterday, the inimitable Jacq Allen (if you are not following her on Twitter, please start now), tweeted a fabulous thread about the importance of getting terminology right when reporting diabetes tech. 

She was referring to a tweet sharing a BBC news article which repeatedly labelled a hybrid-closed loop system as an ‘artificial pancreas’. Jacq eloquently pointed out that the label was incorrect, and that even with this technology, the wearer still is required to put in a significant amount of work. She said: ‘…Calling it an ‘artificial pancreas’ makes it sound like a cure, like a plug and play, it makes diabetes sound easy, and while this makes diabetes less dangerous for me, adopting a term that makes it sound like it can magically emulate a WHOLE ORGAN is disingenuous and minimises the amount of time and effort it still takes to keep yourself well and safe.’ 

Jacq’s right. And after reading her thread, I started to think about the time and effort I had dedicated to diabetes over the previous week. 

This weekend, I spent time dealing with all the different components of Loop. For some reason my Dexcom was being a shit and all of a sudden decided to throw out the ‘signal loss’ alert. After doing all the trouble shooting things, I ended up deleting the app and reinstalling it, which necessitated having to pair the transmitter with the app. This happened twice. I also decided it would be a good time to recharge my Fenix (Dexcom G5 transmitter) and reset it. 

I ran out of insulin while at a family lunch, necessitating some pretty nifty calculations about how much IOB was floating around, and what that meant in terms of what I could eat from the table laden with an incredible spread of Italian food. 

Saturday night, Aaron surprised me with tickets to the Melbourne Theatre Company and in our usual shambolic fashion, we were running late, which meant a little jog (don’t laugh) from the car park to the theatre. I was in high-heeled boots and a skirt that scraped the ground. The degree of difficulty WITHOUT diabetes was high. As I less-than-daintily plunked myself in my seat, I looked at my CGM trace, trying to decide if the 5.5mmol/l with a straight arrow was perfect or perilous, and did a bit of advanced calculus to work out if the audience would be serenaded by the Dexcom alarm at some point in during the 90-minute performance. I snuck in a couple of fruit pastilles under my mask, and surreptitiously glanced down at my watch every ten minutes or so to see if further action was needed. It was. Because that straight arrow turned into double arrows up towards the end of the play.

I spent two hours out of my day off last week for a HCP appointment, as well as several hours dispersed throughout the week trying to work out if there would be any way at all that I might be able to access a fourth COVID boosted prior to flying to Barcelona at the end of the month. 

And that doesn’t include the time spent on daily calibrations required because I’m still using up G5 sensors, the pump lines that need replacing every three days (and checked on other days), reservoirs that need refilling (when I remember…) and batteries that need replacing. Or the time set allocated to daily games of ‘Where is my Orange Link’. And the brain power needed to guess calculate carbs in whatever I am eating. (And you bet there are clever people who no longer need to ‘announce’ carbs on the systems they’re using, but the other tasks still have to happen.) It doesn’t include the time out I had to take for a couple of so-called mild hypos that still necessitated time and effort to manage. 

Short of a cure, the holy grail for me in diabetes is each and every incremental step we take that means diabetes intrudes less in my life. I will acknowledge with gratitude and amazement and relief at how much less disturbance and interruption there is today, thanks to LOOP, but it would be misleading for me to say that diabetes doesn’t still interfere and take time. 

Plus, I’ve not even started to mention the emotional labour involved in living with diabetes. It is constant, it is more intense some days. There are moments of deep and dark despair that terrify me. It is exhausting, and no amount of tech has eliminated it for me. 

The risk we face when there is exaggeration about the functionality and cleverness of diabetes tech is that those not directly affected by diabetes start to think that it’s easy. In the same way that insulin is not a cure, diabetes tech is not a panacea. Setting aside the critical issue about access, availability, and affordability, even those of us who are privileged to be able to use what we need, still probably find a significant burden placed on us by diabetes. 

This isn’t new. Back in 2015 when Australia was the launch market for Medtronic’s 640G, it was touted as an artificial pancreas, and I wrote about how troubling it was. I stand by what I wrote then:

‘Whilst this technology is a step in the right direction, it is not an artificial pancreas. It is not the holy grail.

Diabetes still needs attention, still needs research, still needs funding, still needs donations. We are not there yet, and any report that even suggests that is, I believe, detrimental to continued efforts looking to further improve diabetes management.

All of us who are communicating in any way about diabetes have a responsibility to be truthful, honest and, as much as possible, devoid of sensationalism.’

It’s why I frequently plead that anyone who refers to CGM or Flash GM as ‘non-invasive’ stops and stops now. There is nothing non-invasive about a sensor being permanently under my skin and being placed there by a large introducer needle. Tech advances may mean we don’t see those needles anymore, and we may even feel them less, but they are still there!

We still need further advancements. We still need research dollars. We still need politicians to fight for policy reform to ensure access is easy and fast and broad. We still need healthcare professionals to understand the failings of technology, so they don’t think that we are failing when we don’t reach arbitrary targets.

We still need the public to understand how serious diabetes is and that even with the cool tech, we need warm hands to help us through. We still need the media to report accurately. And we still need whoever is writing media releases to be honest in their assessments of just what it is they are writing about.  

Keep it real. That’s all I am asking. Because overstating diabetes technology understates the efforts of people with diabetes. And that is never, ever a good thing. 

Amazing. But not an artificial pancreas.

Advocacy is a slow burn. I say those words every day. Usually multiple times. I say it to people with diabetes who are interested in getting into advocacy, not to scare them off, but so they understand that things take time. I say it to established advocates. I say it to people I work with. I say it to people in the diabetes world who want to know why it takes so long for change to happen. I say it to healthcare professionals I’m working with to change policy. I mutter it to myself as a mantra.

Slow. Burn.

But then, there are moments where there is an ignition, and you realise that the slow burn is moving from being nothing more than smouldering embers into something more. And when that happens I can’t wipe the smile of my face and I start jumping up and down. Which is what I was doing in my study at home at 2am, desperately trying to make as little noise as possible so as not to wake my husband and daughter who were sounds asleep in other rooms off the corridor. 

The World Health Organisation conducted the first of its two focus group sessions for people with diabetes yesterday (or rather for me, early this morning), and I was honoured to be part of the facilitating team for this event. In the planning for the questions that would be discussed in the small break out groups, the WHO team had gone to great pains to workshop the language in the questions so they were presented in a way that would encourage the most discussion possible.  That was the start of those embers being stoked.

I think that the attention to how we framed the discussion points meant that people thought about their responses differently. 

The topics last night were about barriers to access of essential diabetes drugs, healthcare and technology. Of course, issues including affordability, health professional workforce, ongoing training and education were highlighted. These are often the most significant barrier that needs to be addressed.

But the discussion went beyond this, and time and time again, people identified stigma and misconceptions about diabetes as a significant barrier to people not being able to get the best for their diabetes. It certainly wasn’t me who mentioned language (at least not first), but communication and language were highlighted as points contributing to that stigma.

This recurring theme came from people from across the globe. It was mentioned as a reason for social exclusion as well as workplace discrimination. There was acknowledgement that perceptions of diabetes as being all about personal responsibility has affected how policy makers as well as community responds to diabetes – how serious they see the condition. 

In the discussion about diabetes-related complications, the overall language had been changed from ‘prevention’ to ‘risk reduction’ and this was recognised in many of the discussions as a far better way to frame conversations and education about complications. This isn’t new – it was a recurring theme when a focus in the DOC was the hashtag #TalkAboutComplications. I wrote and co-wrote several articles about it, including this piece I co-authored with the Grumpy Pumper for BMJ

The direction the discussions took were a revelation. No. It was a revolution!

So often at other events and in online debates when language and communication has been raised, conversation has been stalled by people pushing agendas about wanting to be called ‘diabetic’, as if this is the first and only issue that needs to be resolved. That didn’t even come up last night because the people who were highlighting the implications of language understood that when you look at the issues strategically and at a higher level, those details are not what matters. 

What matters is looking at Communication with a capital C and understanding its influence. It elevated the discussion so far above the ‘it’s political correctness and nothing more’ that it would have been ridiculous to drag the discussion back to that level. 

For years, there has been push back regarding communication because people have not stood back and looked at impact. That has changed.

When I wrote this four years ago highlighting that diabetes’ image problem diabetes – all those misconceptions and wrong ideas about the condition – has led to fewer research dollars, less understanding and compassion from the community, more blame and shame levelled at individuals … it was to emphasise that the repercussions have been significant. 

Thankfully as more people started stepping back and considering big picture – health systems, policy, community education – I could see that there were shifts as some people stopped talking about political correctness and started asking what needed to be done to really move the needle. It seems that’s where the very, vast majority of people were during the WHO focus group 

This diabetes #LanguageMatters movement stands on the shoulders not of the people who have elevated the issue in the last ten years (although those contributions have been massive!) or the position papers and guidelines that have been published (although those have certainly aided the discussion in research and HCP spaces), but rather, the people in the diabetes community who, for years, knew that language and communication was a driving factor in our care. People like those in the (Zoom) room yesterday.

Looking for more on #LanguageMatters

Click here for a collection of posts on Diabetogenic.

The Diabetes Australia Language Position Statement (Disclosure: I work at Diabetes Australia and am a co-author on this statement.)

The Diabetes Language Matters website which brings together much of the work that has been done globally on this issue. (Shout out to diabetes advocate Jazz Sethi for her work on this.)

DISCLOSURE

I was invited by the WHO Global Diabetes Compact team to be part of the facilitators at the Focus Group on Advancing the Lived Experience of People Living with Diabetes. I am happily volunteering my time. 

Gosh, it’s been a hot minute since I last did one of these. The whole point of Interweb Jumble posts on Diabetogenic is to highlight anything that has caught my interest in the online diabetes world, write about initiatives I’ve been involved in, and, most importantly, to elevate the great work being done by others living with diabetes. Building folks up and promoting their amazing efforts has been at the heart of what I do, so I’m always happy to share what others are doing.

Grab a coffee, tea or shandy, (Don’t. Don’t grab a shandy), and read on.

Diabetes Chat

YES!! There is a new place to congregate online, in a different format, and with this one, you get to hear people’s voices. (Sorry to everyone who had to endure my 7am Aussie accent last Tuesday!). This is a new initiative that’s been set up by three DOC folks – Tom from the UK, and Chris and Sarah from the US, utilising a new feature on Twitter called Spaces. It’s a terrific way to host an online peer meeting, creating yet another time and place that is BY people with diabetes, FOR people with diabetes. There is a weekly guest who gets put through their paces with terrific questions from the hosts and those listening in, and an open mic chat time as well. 

It’s super impressive to see people from all over the globe participating. It reminds me a little of the DSMA tweetchats which are very welcoming and open to all, regardless of where you live around the world. 

Search #DiabetesChat on Twitter for more.

dStigmatize

The team at diaTribe has once again tapped into one of the important issues, and much spoken about topics in the diabetes community and developed a terrific new website addressing diabetes stigma. It’s called dStigmatize and you can find it here

I’m delighted to see Diabetes Australia’s work on stigma and language highlighted so prominently on the site (disclosure: I work at Diabetes Australia and have been involved in this work), including the videos from last year’s Australian National Diabetes Week campaign, which have been viewed hundreds of thousands of times. 

Seasons of…diagnosis

New research out of Finland asked if more people were diagnosed with type 1 diabetes during colder months. You can read the paper here.

And a discussion on Twitter about it here.  

HypoRESOLVE podcast

The HypoRESOLVE comms team created a new podcast to showcase the incredible work of this researchers involved in the project, with a strong emphasis on how people with diabetes are involved in the project. I was delighted to host this podcast and speak with some truly remarkable clinicians and researchers as well as other people with diabetes who are on the projects Patient Advisory Committee. (Disclosure – I am on the HypoRESOLVE PAC. PAC members are now paid an honorarium for our time working on this project, however we were not at the time of recording or working on this podcast.)

Here is the most recent episode (on Spotify). 

Better engagement with PWD = better services

Great paper from a team out of the UK looking at how connecting with the lived experience expertise of people with diabetes, health professionals and diabetes health services can improve service delivery. 

One of the co-authors is one of the GBdoc OG, Laura (@Ninjabetic1 on Twitter), and it’s great to see her name back in the diabetes world, contributing to this important discussion. 

And the DDA podcast…

The Danish Diabetes Academy developed a podcast out of their Winter School that featured Postdocs who had participated in the academy speaking with others in the diabetes world to discuss who academic researchers work to ensure their research reaches and benefits those they are researching. I was so honoured to be invited to be interviewed for their first episode and answered questions about how communication is important when engaging people with diabetes to be part of the research process. You can listen here.  

Language Matters for Portuguese speaking friends with diabetes!

The latest in the Diabetes #LanguageMatters stable is this document out of Brazil. Always terrific to see more and more statements coming out, highlighting the importance of language and communication in diabetes. 

Thinking of starting on an insulin pump?

If so, the awesome Grainne at Blood Sugar Trampoline has you covered with this post. It is truly one of the most measured pieces I’ve read about things to consider if you are on the path to starting an insulin pump. The gushiness and superlatives that many of us resort to when banging on about how much we love our pumps are replaced with sensible, and practical advice and suggestions. If this is where you’re thinking of taking your diabetes management, Grainne’s piece is a must read.

Who doesn’t want to come to ATTD!? 

#dedoc° voices is back and heading to ATTD in April this year, and applications are still open if you would like to be considered as part of the program. Successful applicants will be granted access to the entire ATTD program, giving them an opportunity to share what they see and learn with their networks. Make your submission count – this is a competitive process and success is more likely for those who take the time to provide details of how they will be involved in the program. Details here

(Disclosure: I am an advisor to the #dedoc° voices program. I do not receive any payment for this role.) 

World Health Organisation

In March, the World Health Organisation, through the Global Diabetes Compact, is hosting a two-day focus group for people with lived experience of diabetes. If you’re interested in getting involved, there is an expression of interest process you can complete here

Also from WHO is this survey which is asking people with diabetes how to improve messaging and communication. You only have until 28 Feb, so get onto it now! (Disclosure: I was a volunteer consultant in the development of this survey) 

Massive kudos to the Global Diabetes Compact team who are doing an absolutely stellar job engaging with the community. Always so terrific to see!

A diabetes sea shanty…

You’re welcome.

(Follow @TypeWonDiabetes on Instagram here.) 

People with diabetes and their involvement in research

An end of year delight was this article that I co-authored making it to publication. The article is about how to better involve people with health conditions in research (which really seems to be something I’ve been very focussed on recently!). 

Spare a Rose – last push

February still has a last few days which means that Spare a Rose isn’t over yet. You can still donate and contribute to this year’s total and support people with diabetes in under-resourced countries through the Insulin for Life program. 

It seems fitting that for my first post for the year, (happy 2022, friends!), I look at how diabetes #LanguageMatters is, (once again), colliding headfirst with COVID communications. 

It’s the age of Omicron, and we are repeatedly, almost obsessively, reassured that this particular strain of concern of the virus we’re all completely sick of (and, for many, sick with) is mild. Mild. Mild. Mild. 

And all I can think about is how damaging that word has been in diabetes communications, and, it seems, it’s quite problematic in COVID circles too.

Mild suggests that something is inconsequential; that it is minor; that it is easily resolved. Mild doesn’t consider the emotional toll and worry people might be feeling about being exposed to a virus that is spreading like wildfire.  

When we talk about mild hypos in diabetes, we’re referring to those pesky hypos that are fixed with a few jellybeans and a couple of profanities. It’s a wham-bam-thank-you-ma’am low that is done and dusted in a few minutes. It’s a quickie. 

Except anyone who lives with diabetes knows that is not necessarily the case. So-called mild hypos can be worrying and stressful and cause anxiety. They can impact on how people feel about their diabetes and confidence. 

Calling them mild has meant that these types of hypos are dismissed, and seen as something that, as well as being easily resolved, can be easily prevented. That’s not how hypos work, and framing them that way can lead to people with diabetes being blamed for not doing what they should have to prevent them, or that they are not something that needs attention.  

Talking about the effects of Omicron is important. It’s good to know that, in general, early results are showing that Omicron is causing less severe illness, despite being highly transmissible. But a mild dose of a serious virus that still has so little known about it isn’t unimportant. It may be less dangerous than previous strains, but it can still be serious. 

There is a flow on effect to defining Omicron as mild. It can mean that it’s not being taken seriously, and people are, perhaps, not being as cautious as they could be. Anti-vaxxers are using this definition as ammunition to further shape and spread their unhinged views, and ignore simple public health efforts, such as wearing a mask and maintaining physical distance. I know this group doesn’t need any help in pushing back against evidence-based measures that clearly help stop the spread of contagious diseases, but I’ve seen them bleat with delight ‘OmiCrOn iS mILd’ as part of their deranged rants, because that’s what they keep seeing and hearing. 

Sadly, calling something mild has led to lousy planning (some would say sheer incompetence) by the government and government agencies. It’s this planning that is needed to help people properly prepare and protect themselves and their community. 

I wonder if we were to ask people what their stress levels are like as they can’t access rapid antigen tests, or can’t afford to pay for them if, by some miracle where the planets have aligned, they find somewhere that has a hidden stock somewhere. And how they’re feeling as supermarket shelves are emptying, lines for PCR tests thread around (many) blocks, and their workplaces are needing to close because so many people are home from Omicron. 

I’m guessing if they were asked, the answer wouldn’t be ‘mildly stressed’. Nor would they necessarily rate the situation in which we find ourselves as ‘mildly inconvenient’.

Mild doesn’t mean insignificant. Anyone who waits for daily numbers and has seen hospitalisation, ICU and death rates climbing knows that. Families of people who are seriously ill, or who have died know that. People like me who have spent the last two years doing everything I can to protect myself because I’m so terrified about getting COVID know that.  

Communication around COVID has been a disaster from the beginning. And two years on, it hasn’t improved. Because here we are: less than two weeks into the new year, and about a month into a new variant and it’s as though we haven’t learnt a bloody thing about how and why words matter when speaking about health. 

Over the course of this year, I have been involved in a number of diabetes-related initiatives and events organised by the World Health Organisation. I remember the first email I received inviting me to be involved in an event because I was impressed with the communication about diabetes. There was a clear commitment to centring the lived experience, and it seemed that whoever was coordinating the project had an excellent understanding of the condition. I wasn’t sure if anyone involved was living with diabetes themselves, but I was certain they were working with people with diabetes to help shape the messaging. The most recent event, just last week, was coordinated by someone in the diabetes community – someone I’ve met in person and interacted with online for some time, and someone who is an excellent communicator with an in depth understanding of the global diabetes stage. 

And so, you would think that with all this diabetes intel and track record of great engagement that I would be surprised when the WHO made a spectacular blunder on Twitter yesterday with its efforts for World Diabetes Day. 

Except, I wasn’t surprised. At all. Because I know exactly how it happens. It’s the very definition of the left hand not knowing what the right hand is doing, and it’s all too common when comms teams don’t work with the teams focusing on lived experience. 

September marked twenty years I’ve worked in diabetes organisations in Australia. On top of that, I’ve been involved with the IDF for the last decade, as well as other diabetes organisations and companies around the globe. And in that time, I’ve seen some absolute clangers – clangers of which I first became aware once someone had hit share, and people with diabetes were, quite rightly, baying for blood. I’m not going to mention any, but I can tell you that I am still in therapy for a campaign that involved clowns, sharks, and spiders. Sigh.

It’s a horrible feeling when the community fury starts, and it’s directed at something you feel you should have been ahead of it or stopped it from happening in the first place. 

It’s also horrible to be put in a position of seeing this happen and not knowing what to do about it, or rather feel that whatever you do, it’s going to cause trouble. At the IDF Congress two years ago, sitting on stage in a panel with the newly minted IDF President, I was put in that position. After the President used a stigmatising image in his presentation, I had two options: sit there and say nothing or call it out. Option A would have resulted in people with diabetes not understanding how I could let it go. Option B could have resulted in furious IDF powers that be and me never working with them again. 

Option B was the only thing I could do. I knew that. But I cannot tell you the fear I felt as I spoke out on that stage, or afterwards. I barely slept that night, terrified at what was going to happen. Before the sun was up the following morning, I sent my boss, the CEO of Diabetes Australia, a message asking for an early breakfast meeting, linking him to a tweet with video of what had happened the evening before. In the back of a cab through the still-dark streets of Busan, I was so worried that I was going to be told that I handled it the wrong way and that I shouldn’t have said anything publicly. But that’s not how he responded. 

By that evening, I’d spoken with the IDF President, as had a few others, and together, we planned to pen an article about the how language can stigmatise diabetes. It was published the following year in The Lancet, and you can read it here

Last year, I stuck my head about the parapet when a state-based diabetes organisation in Australia (one for which I worked for 14 years) got things wrong when they were putting together an event with last year’s Australia of the Year (who has, I’m sad to say, been very stigmatising about type 2 diabetes since he stepped onto the diabetes stage). It was uncomfortable for me to write about the disappointment I’d felt seeing the language being used in promotion for the event, but I found myself in the same situation as I’d been at the IDF Congress the year before. I knew I had to say something. Because staying silent isn’t an option, no matter how uncomfortable it might be. 

I look at the way the comms team at Diabetes Australia operates now and the incorporation and focus on lived experience means that we run campaigns like this year’s stigma campaign and last year’s diabetes burnout campaigns. (And yes, I am completely biased because I work at Diabetes Australia, but this integration is something that means our messaging is far more hit than miss.)

Perhaps the thing that organisations need to reflect upon when something like this happens is just how easy it is to avoid doing it again. Despite yesterday’s clumsy efforts, WHO is already a long way there to doing better next time. It really is simple – work with community advocates, because there are always people who are keen and willing to be involved (hand raised!). And identify the people in the organisation who can help shape messaging and get it right. The WHO has those people there already meaning that it can happen straight away. (And for organisations that don’t, employ those people now.)

It’s been a while since my last diabetes in the wild encounter. It makes sense. I’ve barely left my house for the last 20 months and I’ve not really been frequenting the places where I would usually have those happenstance meetings – cafés and airports. Gosh, remember airports? Remember the queuing and the waiting and the frustrations and the delays and the cancellations? Anyway, I digress…

It shouldn’t surprise me that it was a café that provided the setting for my accidental encounter with another person with diabetes. I was working away, happy to not be in my house, even happier that someone kept bringing me outstanding caffeine. Happiest because I knew that every single other person sitting there was fully vaccinated. 

I was doing the sort of work I do best in a café – editing. I get into a zone, concentrate on the task, and just read and edit in a super-efficient and fixated way. I don’t get distracted by anyone around me, and the noise becomes a reassuring beat that I work to. I completely block out anything on around me. 

Including the fall rate alert on my Dexcom app. Anyone who uses Dexcom knows that this is a particularly urgent, loud and unforgiving wail. It cuts through absolutely everything. I absentmindedly nodded in the general direction of my phone when I heard it, but didn’t make a move as I was totally focused on rewriting a particularly sticky sentence. (Probably like every bloody sentence in this post…) 

And so, I didn’t notice a woman sitting nearby get up from her chair and walk in my direction. I didn’t notice her stop right at my table. In fact, it wasn’t until she cleared her throat and said ‘Excuse me’ that I looked up, realising there was someone right there. She was fixing her mask behind their ears at the moment I looked up at her, my eyes focusing away from my MacBook. I blinked a few times and smiled, and then reached for my own mask before realising it was already on my face. I exaggerated my smile, so I was smiling with my eyes. 

There was a slightly awkward moment as I waited, because, look, I’ve forgotten how to engage with people. I probably should have said ‘hi’, but I’ve really lost the art of chatting with people. How do conversations start? So, I was thankful when she introduced herself. And then she asked, ‘Are you okay? I heard your Dexcom a couple of times. I just wanted to check you are okay.’

And that was how I broke my streak of having conversations about diabetes with other people with diabetes I’ve never met before. 

Turns out, I’ve missed it. Really, missed it.

We spoke for a while, sharing the usual things, comparing notes about which HCPs we see, and talking about which tech we are using. She is about to start looping, so I answered a heap of questions, remembering that I need to not be too evangelical and gushy about it. I toned down my ‘It’s the best thing I’ve ever done for my diabetes’ (because it is) by adding ‘But, of course it’s a learning curve and can be tricky.’

We told self-deprecating stories about how crappy our attitudes to diabetes have been at different periods. We shared our Covid-19 vaccination stories and compared when we’d be getting boosters. And we spoke about how we felt every time diabetes was mentioned in connection to Covid-19. 

Through it all my Dexcom kept squealing and I ignored it because I just wanted to slurp up a diabetes conversation with someone in real life, where all we really had in common was diabetes. It felt like a therapy session, a confession, and catching up with a long-lost friend all in one fifteen-minute encounter. 

When our conversation ended, she turned to return to her seat, and I settled back, searching for the sentence I’d been working on. But before I could do that, she turned back towards me and said, ‘I read your blog. I’ve seen you here before…well, used to see you here before Covid…and I wanted to say something. It’s really lovely knowing that there is someone like me who comes here.’ 

And then I cried. Because I remembered just what it is to connect. How real it feels. It’s why I started this blog in the first place – because I wanted to meet others just like me. Well over ten years of writing about diabetes, twenty years of diabetes advocacy, and that feeling of connecting never gets old.

Lots more diabetes in the wild stories on this blog post from earlier this year.

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