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The fiction new releases section at Readings Books in Carlton is on the lefthand side, right as you walk into the store. It’s often the first place I stop on my frequent visits to my favourite local bookstore. 

On Sunday night, as we wandered in after grabbing a coffee and bigne San Giuseppe at Brunetti’s across the road, I turned left as we walked in. I slowly wandering around the high table in the middle of the section before turning my attention to the shelves along the wall, book covers facing outwards, enticing browsers to read them. 

That’s when I saw this:

Click image for more details.

I quickly picked it up, opened it to a random page about a third of the way in and realised quickly that one of the characters had diabetes. That was enough for me to buy the book. 

I spent the Monday public holiday wrapped in quilts, slurping tea and whizzing through the book. I couldn’t read it fast enough!

After finishing, I searched online and found an interview with author, Sascha Rothchild, where the book was referred to as ‘diabetes noir’, a genre where tales such as Reversal of Fortune (which is based on a true story) and other death-by-insulin crime thrillers, along with a few episodes of Law and Order, neatly fit. Perhaps ‘insulin noir’ would be a better label.

It turns out that the author’s husband has type 1 diabetes, and that was the catalyst for her writing a book featuring a character with diabetes. I’m not going to give anything away, other than to say that it was diabetes that hooked me in, and it was diabetes that saw me turning pages at lightning speed, even though I could see just where the storyline was headed. 

The details about diabetes are accurate, and only mildly sensationalist. Really, only one aspect is slightly overplayed, but I willingly overlooked that because it was necessary to the narrative. There were certainly some very clever diabetes observations that wouldn’t be out of place on any given day in the DOC, such as the protagonist commenting on how, when finding out about someone with diabetes, random strangers insist on sharing their own ‘worst case scenario’ stories, which inevitably involve someone losing a limb and being blind, and what the bedside table of a PWD might look like.

This isn’t really the story of a person with diabetes, and diabetes is not the main character. But it threads its way through it, popping up now and then in a way that, for this reader with diabetes, kept my attention throughout. I suspect for people not familiar with diabetes, or new to the diabetes world, it could be a little chilling and unsettling, but probably not for anyone familiar with the story of Sunny and Claus von Bülow.

Obviously, I’m desperately keen to hear what others with diabetes think of the book. I know I can’t be the only PWD drawn to narratives about diabetes to see just how we are represented in literature and on film. 

So, please go read it. It’s available everywhere online and from bookstores. It’s also available to download and as an audio book. Ask your local library to get a copy in if they don’t already have it. And then get in touch so we can have an informal book group chat about it. I’m sure that we’ll have lots to say!

Stress impacts diabetes in different ways. And of course, everyone’s response is going to be different. 

Before Loop (which now feels like almost a lifetime ago), the effect of stress on my glucose levels was tricky and unpredictable. At times, it would make me high. Other times, I’d be in Hypotown (the town no one wants to visit) for hours, without any respite. The clever Loop algorithm tidies most of that up for me these days. 

But when it comes to diabetes, stress doesn’t only impact what I see on my CGM trace. It’s far more than that. Loop can only do so much… Insulin automation doesn’t mean diabetes automation. And it certainly doesn’t mean life automation. 

Let me talk about how it’s affected things in the last couple of months …

To some, it might look as though I have become lazy about my diabetes management. I have run out of insulin in my pump more times than I care to admit, scrambling to find my spares bag to refill the canula. I ignore the alerts, silencing alarms and putting the task that needs to be done out of mind. 

I’ve let the batteries on my pump and RileyLink wear almost right down. In fact, the batteries have got to the point where they are so crucially low Loop has stopped working. Even the Red Loop Of Doom on my Loop app hasn’t been enough to swing me into action. 

I’ve almost run out of insulin. I never do this. Ever. I have a system that works for ordering new scripts to make sure that there is always at least two weeks’ supply, and then back up plans for my back up plans. And yet, there I was, staring down the last few drops of insulin in a penfill. I don’t use insulin pens. I use vials. But I’d run out of vials and was using a penfill that I have for absolute emergencies. 

This had become an emergency. 

Same goes for pump consumables. I was reduced to searching the depths of my diabetes cupboard and discarded handbags looking for an infusion set, desperately hoping that there was at least one, somewhere, that would do the trick before I had to knock on the door of my neighbour, asking her to tide me over.

This is one part of diabetes burnout for me – the way that I deal with my diabetes tasks. It’s not feelings of resentment that I must do those tasks; it’s not feeling distressed that I must do them. It’s not even feeling a paralysis about doing them. It’s simply not caring enough about them to take the time and energy to engage my brain and actually do it. 

I know that when I am stressed, something’s gotta give, and for me, that’s always been doing diabetes. 

I cannot tell you how much having automated insulin delivery sweeps up a lot of it. Forgotten boluses get sorted by Loop. Sure, it may take a little extra time and mean a bit of extra time above my upper range limit, but if I don’t engage, Loop will bring me back in range soon enough. 

The low-grade nausea I’ve been living with for the last month means that eating is sometimes difficult, but I don’t even need to think about what that means for glucose levels, because Loop mostly does it for me. 

And sleep! Sleep the gift that Loop keeps giving has been interrupted, not by diabetes, but by waking stressed. Or, as has happened twice in the last week, with a splitting headache, so painful that the throbbing has woken me from a deep sleep. Pre-Loop, sleep disturbances would wreak havoc with my glucose levels (often because most of the time those disturbances were because of my glucose levels). But now, as I see the upward spike start because I’ve been woken in the middle of the night and glucose is being dumped because apparently, I’m now up and awake, Loop kicks in with an ‘I don’t think so’, and that spike is shut down quickly.

But the nausea is debilitating physically. And being woken in the middle of the night is exhausting. And the stress is leaving me feel a little hopeless all around, to be honest. Teary, emotional, tired. And burnt out. 

Many years ago, after a couple of periods of intense burnout, I did a smart thing and found a psychologist to help me. Together, we learnt to identify the triggers that precipitated burnout. This has truly become one of the most powerful tools in my diabetes emotional wellbeing arsenal, because learning when I am heading down the slippery slope of burnout, and realising it’s coming, has meant that I’ve been able to address it before I get so deep into that dark space, it becomes challenging to come back from. 

So, right now, I know this is happening. I can feel the stress and the physical manifestation of it, and I can see how it is influencing my diabetes. Today, I spoke with my psychologist – in a way waving a white flag of surrender knowing that I need someone else to come in and help me through this, because I can’t do it myself. 

The win is that I’ve seen it and I’ve recognised it. The win is I’m seeking help. The win is that I’ve caught it before I’m plunging to dark depths (I hope). 

It’s not a win that I’m feeling this way. It’s not a win that this level of stress has started to affect so much, including my diabetes. It’s definitely not a win that I’ve reached the point where I’m staring down the path to diabetes burnout despite the reason being un-diabetes-related stress. 

But that’s how it goes. Diabetes becomes part of it. Of course it does. Because diabetes is always part of it. Always part of everything. Always hand in hand with whatever else is going on. Stress and diabetes leading to burnout. One of the few equations in diabetes that I can count on.

I saw this image by illustrator Alessandra Olanow and thought it perfectly summed up what is going on inside my head right now.
(Click to be taken to Instagram for details.)

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. 

One day during one of our lockdowns (honestly, can’t remember which one), I was taking a government mandated walk to fulfil another government mandate – supporting local businesses when possible. Living where we do means there were always a variety of cafes to visit to fulfil this mandate.

I was with Aaron and possibly one of the pups and we were walking along our street, happy to be outside the confines of our house, masked to the max and looking forward to some inane conversation with a barista as our coffees were being prepared. Small pleasures made for big excitement during those long and seemingly never-ending lockdown days. 

There was a woman walking towards us, so we exaggeratedly smiled with our eyes and murmured hello, because that’s what everyone did when only eyes were visible, and we were all desperate for human interactions. 

‘Are you Renza?’ she asked me. Surprised, I said yes. (I was also impressed she knew who I was considering I was wearing a mask.) 

Look, I am hopeless at the best of times when it comes to recognising people. In fact, I have the double hopelessness of forgetting names AND faces. But turns out, in this case, it wasn’t my absentmindedness to blame. We’d never met before; she recognised me from here. She had stumbled across Diabetogenic when she was newly diagnosed and doing the unthinkable and Googling diabetes. 

She said some very lovely and kind things, and said she was really glad she’d found the blog because it helped her feel less alone. And then, after we had a little chat about diabetes and diabetes things, we each continued our hour out of the house. Once again, a lovely little demonstration of the value of shared lived experience – interactions which will delight me forever.

It never gets old. 

There are countless examples of this sort of support in the diabetes community. Just a couple of weeks ago on Twitter, there was a gorgeous discussion as a back and forward chat happened organically. It started with a tweet about how it’s okay to feel that we don’t need to be diabetes superheroes, and ended up with a group of women tweeting about body image, and appreciating what our bodies were able to do, even as they bear (and we wear) the blemishes and scars of diabetes. 

The conversation focused on truths of diabetes, with each person in the exchange sharing something about their own reality. These are the snapshots and glimpses of diabetes that are often missing for the glossy marketing materials, social media influencer posts and ‘you can reach the stars’ articles in diabetes magazines. 

At one point, the only way I could respond to the familiar tales that were being tweeted from women across the world with such generosity, was ‘I am with my people.’

Despite decades of people with diabetes explaining the value of peer support, and ever-growing research showing how important it is, it’s still up to newly diagnosed people to stumble across others with diabetes thanks to a simple Google search. I don’t know that peer support can be ‘prescribed’, but surely there must be a better way to make sure that people – whatever stage of their diabetes life – at least know that there is a global community out there of people who will ease their isolation and whose stories will help give their own shape and understanding. 

But I guess until then, we hope that Google, or whatever other search engine someone uses, will point to blog posts, vlogs, online communities, Twitter chats and other virtual gatherings. Because who knows just where those cyber connections and chance encounters will lead. 

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.

Diabetes and menopause – there are two things that have an image problem! Diabetes’ image problem has been discussed a bazillion times on here and is well documented by others. 

And menopause? Menopause is middle-aged women; women who are past their prime and ready to settle down with a pair of slippers and a good book. Women who are a hot mess rather than just hot. Angry old women who are, at best, easily ignored, at worst, are given labels such as the incredibly sexist and derogatory ‘Karen’ thrown at us, especially if we dare demand attention for issues that are important to us. Oh, and we are invisible, apparently.  

Well, fuck that. I am none of those things. I am as loud and out there and determined as I have always been. Sure, I like the idea of settling in for the night with a good book and a cup of tea, but I’ve been like that since I was in my twenties. And the anger isn’t new. Being radicalised as a kid does that to you, and I fairly, squarely, and gratefully credit my mother for it. 

Turns out that my attention now is being turned to an issue that is one of too little research, too little attention, and too little available information that is relevant, evidence-based and engaging. And that is diabetes and menopause, and perimenopause. 

Yes, I’ve written before about before. Missed it? Well, here you go: This time; this time and this time.

If you jump on Twitter now and search the words ‘diabetes’ and ‘menopause’ you’ll find a number of discussions which have been started by people with diabetes who are desperately looking for information to do with the intersection of these two topics. As well as information, people are asking to be pointed to examples of others who have been through it and are willing to share their stories. At the recent #docday° event, the inimitable Dawn Adams from IRDOC gave a rousing talk about why we need to focus more on this issue. (Follow Dawn on Twitter here.)

Here’s the thing: I still get diabetes and pregnancy reminders from my HCPs despite being 48 years old and very clear that having a baby right now (or ever again) is not on my to-do list. Been there, done that, bought the t-shirt and have an almost fully formed adult to show for it!

And yet despite that, I still get reminders about how important it is to plan for a pregnancy, take birth control to prevent it, and make sure that I take folate. Cool. That’s really important information. For women planning to get pregnant (and the birth control bit is important for women looking to avoid it).

But more relevant; more targeted; more person-centred for me is information about perimenopause and menopause. 

Just over twenty years ago, when I was looking for information about diabetes and pregnancy, there wasn’t a heap of it. There was, however, a lot of research about it. What we really needed were resources for people with diabetes who wanted information that didn’t look as though it had been written and illustrated in the 1980s. We wanted the evidence-based materials that didn’t scare us. And so, working with other women with diabetes who were the same age as me, and looking for the same sort of information, we made it happen. The diary I published online when I was pregnant added to other stories that were already there. It was hugely reassuring to know that I could find others who were sharing stories that either mirrored my own or suggested the path that mine might follow. 

These days, it’s super easy to find stories about pregnancy and diabetes. You don’t need to search too hard to find and follow diabetes pregnancies on Instagram, from pregnancy announcements through to delivery announcements and every twinge, craving and diabetes concern in between.

Less so menopause. Look, I get it. What’s the cute, good news story here? With pregnancy stories, there is a baby at the end – a gorgeous, cooing baby! There is nothing like that with menopause. Despite that, I think there are stories to tell and share. And a community to provide support and lived experience advice. 

Right now, there is a chorus of people in the diabetes community who are calling out for this information and talking about the topic. I’m willing to bet that a lot of us were the ones who, twenty years ago, were calling out for decent diabetes and pregnancy info. 

I’m not a clinician and I’m not a researcher. I don’t write grants for studies about menopause and diabetes that suddenly put this topic on the research agenda and start to help grow an evidence base. But what I can do is generate discussion and create a space for people to share their stories, or ask for information in the hope that others will answer the call.

The ‘The Diabetes Menopause Project’ isn’t really a thing. It’s a community cry to generate that discussion and some lived experience content. There are some great pieces already out there and I can’t tell you how many times I’ve pointed people to those blog posts and articles. But there needs to be more, and they need to be easier to find. 

And so, to start with, here is what I do know is out there. If I’ve missed something, please let me know and I’ll add to it. At least then there is an easy one stop place to find the limited information that is out there. Get in touch if you have something to share. 

The Big M – More Taboo Subjects, from Anne Cooper. 

Type 1 and the Big-M – a five-part series from Sarah Gatward about her personal experiences of type 1 diabetes and menopause from Sarah Gatward

Managing Menopause and Type 1 Diabetes – also from Sarah Garward, published by JDRF-UK

Menopause + Type 1 Diabetes – Ginger Viera’s writing for Beyond T1

I hosted a Facebook live with endocrinologist, Dr Sarah Price where, amongst other issues, we discussed diabetes and menopause

Research!! This journal article looks at the age menopause occurs in people with type 1 diabetes 

I don’t know what I was expecting, but I was thinking that diabetes conferences in the time of COVID would be different to pre-COVID times. But really, apart from some people wearing masks, less kissing the cheeks of strangers and sharing vaccination status (‘How many times have you been boosted?’), there wasn’t all that much the differed from the last face-to-face conference back in February 2020.   

I realised that on day 2 as I walked through the barely light streets of Barcelona from my hotel to the conference centre that the idea and demands of ‘conferencing hard’ hadn’t changed. The 6.30am breakfast was still alive and well, scheduled so that there was time for another morning session before the actual sessions started. It makes for a very long morning which is what I said walking out of my fourth meeting for the day and seeing it was still only 10.30am. 

Also the same is the way conference session timetablers still manage to clump all the sessions I want to go to in the same time block! I barely made it to any sessions anyway, (project and collaboration meetings made it difficult), but when I did have a spare half hour there were always several concurrent sessions I wanted to be in. 

And in the same way, there is a magical equation applied to room allocation that results in the most popular sessions being given the smallest rooms, so that people are crowded in and then overflowing – something that has always been a problem but seems even more of an issue in COVID times. 

The Exhibition Hall remained a playroom for HCPs with ever brighter and flashier booths all vying for attention. In what is starting to resemble a Las Vegas casino room, blinking lights, interactive boards, and promising giveaways keep attendees away from sessions and focused on shiny work of overpaid marketing and PR firms. They earn their coin – There were queues outside the Exhibition Hall each morning, and the booths were jam packed throughout each day.

I had one of the most confusing and weird experiences ever in this Exhibition Hall at the Abbott stand. I’d been given a heads up that they were giving away dummy Libre 3 sensors on the stand, so I wandered over to see what the buzz was all about. All around the massive booth that had prime position right at the entrance of the hall were giant interactive screens. Attendees were invited to work their way through a six-question survey to test their knowledge on Freestyle Libre 3. 

After I got my score, I walked up to one of the Abbott staff and we had this encounter:

Me: ‘Hi, I’ve just done the survey and I was wondering if I could get a dummy sensor, please.’  

Abbott staff: ‘I’m sorry?’

Me: ‘Oh, um… a demo sensor?’

Abbott staff: ‘We don’t give away demonstration sensors. Health professionals can register to have one sent to them.’ (She was eyeing the N/P label on my badge.)

Me: ‘Okay, well we can talk about that another time, but for now, what is the sensor that is being offered to people finishing the survey thing? A dummy sensor?’

Abbott staff: ‘Oh no. we don’t have dummy sensors. We have … (pause for effect) … glamour sensors.’ She wandered off to get me one while I stood there stunned at what I had just heard. 

Look, I know I spend a lot of time working in the space of diabetes and language, but this one had be absolutely floored. Glamour sensor? I turned to my friend Andrea who had watched this entire encounter and we both mouthed in astonishment ‘Glamour sensor?’

The Abbott rep returned and handed me a box that looked suspiciously like it contained an engagement ring, which I thought was lovely if not a little forward considering we’d only said half a dozen sentences to each other.

I thanked her and opened it and there inside was this:

I sighed. There was my glamour sensor. A fun little token of love from the device company that makes a bloody good product…that is unaffordable to the vast majority of people with diabetes who could benefit from it. I get the excitement though. It is very sexy. It’s tiny and obviously I desperately want it to come to Australia NOW so that we can have access to it. Thank you and please. But is the fanfare and theatre around it at a diabetes conference all that necessary?

Which brings me to another thing that is exactly the same. As I get swept up in the excitement of new technology much like anyone else, I have another focus. And that focus is horribly annoying for whichever rep asks if they can help me when the see me lurking with intent at their booth.  ‘Nice kit,’ I say to lull them into a false sense of security, letting them think I am just like any other admiring punter wandering around. And then: ‘When is it coming to Australia?’ The answers are always the same – no matter who I am speaking to and no matter which company they are from. It’s a variation on ‘No idea; maybe I do know, but I can’t tell you; you’re a long way away; there aren’t many of you; stop asking me.’

Also slightly gimmicky, but absolutely for the right reasons, was the demo Omnipod give away at the Insulet stand. Here, anyone could simply head up to the stand and ask for one, and Insulet would make a €5 donation to Spare a Rose for Ukraine. I can’t really complain about this seeming like a stunt when it’s going to a cause very, very close to my heart…!!

One of my favourite things that was a throwback from pre-COVID conferences was seeing groups of people with diabetes – many there as part of #dedoc° voices – wandering around together in packs, comparing notes, and supporting each other. That is something that certainly hasn’t changed, other than for those packs to be more recognisable and more welcome. Definitely a good thing! And something that I hope to see a lot more of in coming meetings.  

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.

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’ve always thought that being pushed out of my comfort zone is a good thing. There’s something to be said about feeling uncomfortable and being stretched outside the boundaries of familiarity. 

And so, with that in mind, I jumped on a plane and flew to Barcelona for ATTD. If you read my last post, you’ll know it was nowhere near as easy and flippant as that last sentence sounds. 

A lot of the stresses I had before I left ended up amounting to nothing. There were no endless queues at the airport, or crowds who didn’t understand keeping 1.5 metres apart. Almost everyone was wearing a mask. Security was even more of a breeze than usual (apparently laptops and other devices don’t need to be removed from carry-on luggage anymore), and, requesting a pat down rather than walking through the full body scanner was met with a nod and a smile.

Everyone wore masks boarding the plane and most seemed to leave them on throughout the flight. This isn’t something to treat lightly. The first flight alone was almost 15 hours long! My mask was removed only while drinking and eating, staying on snugly while I slept. 

While there were no formal requirements for a supervised COVID test to enter Spain or return to Australia, my daily tests did cause 15 mins of countdown anxiety. One evening, someone messaged me to tell me that she had tested positive. We’d had a breakfast meeting the previous morning. I calmed my initial response (which was to freak out and burst into tears) by remembering that we’d all been masked up apart from the minutes we were eating.

When I arrived in Barcelona, I had been cautioned of convoluted arrival procedures and extra queues to check health and vaccination status. Before leaving, I’d had warnings and reminders from the airline and friends already there to make sure I’d completed my online Spain Travel Pass because the QR code would be needed. Except, it wasn’t. Passport control took under than 90 seconds. And my code wouldn’t scan for the woman checking my pass. ‘Where are you from,’ she asked me. When I said Australia, she laughed and told me just to go get my bag. (Clearly, she wasn’t up to date with our COVID numbers…)

Luckily, the people I spent most of my time with were all on the same page as me when it came to masking. We were not the norm. Most people were not masked up. I realised that when I walked into a hotel restaurant to meet someone a couple of hours after I arrived, and again as I walked into the conference centre on the Wednesday afternoon. As I stood on the stage to welcome everyone to the #dedoc° symposium, I was grateful to be greeted by a sea of masks with fewer than ten people in the packed crowd choosing to not wear one. And a couple of them searched in their bags for one after I and first speaker, Dana Lewis, thanked people for masking up. 

I have to say it did surprise me to see so few healthcare professionals wearing masks, and eagerly reaching out to hug or shake hands when we met. I actually was okay with giving people I know a hug, but we always asked first. I adopted a weird kind of hopping around to avoid people I don’t know too well as they approached, instead extending my elbow. 

I went into last week with a very clear idea of how I was going to, at all costs, avoid people. I’ve held tightly onto health measures (masking, distance, lots of hand washing, meeting people outdoors) since the pandemic began, and there was no way I was going to be partying like it was Feb 2020 just because I was back in Spain. 

But there was a moment that I did throw a little caution to the wind. The evening I arrived, after my first meeting, I got in the elevator to the rooftop of the hotel where I was staying. It was the same place all the #dedoc° voices were, and they were having an informal meet up on the roof. I walked out, and a few of them – the ones I know well – screamed and charged at me. And instead of freezing and freaking out, I teared up and was happy to just be enveloped by them all. I was wearing a mask and, in that moment, that as enough. 

Since I have returned home, I’ve been asked dozens of times what it’s like travelling and being at a conference again and how I coped. The answer isn’t straight forward. 

Travelling again was terrifying. I didn’t enjoy being in transit at all. I struggled with there being so many people around me. And I was uncomfortable with the unpredictability of the whole situation. But I focused on the bits I could control and did my best to just deal with it. 

Being at a face-to-face diabetes conference was in equal measure exhilarating and difficult. Being able to have in real life conversations with people about their advocacy and how they have been going is different to messaging or Zooming – it just is. Bumping into people in conference centre hallways starts conversations that absolutely wouldn’t have happened otherwise. And it’s those conversations that often lead to collaborations and new projects. I predicted in my last post that the muscle memory of a real-life conference would return without much effort, and I was right. 

The equation for me is this: the good outweighed the bad. The moments of joy and delight dwarfed the moments of terror. The feeling of being part of something – that truly global diabetes community of truly incredible diabetes advocates and healthcare professionals and researchers – returned with a fierceness I wasn’t expecting. I felt at home and where I belonged, and the moments of anxiety – sometimes almost paralysing – were overcome by knowing that. And the peer support was immense. I didn’t realise just how much I needed that contact again.

I’m not going to be rushing back to the same conference and travel schedule I had built in 2019 – it’s not sustainable in so many ways. And there is a lot of risk assessment going on. I won’t be at ADA this year, but EASD is on the cards. Carefully chosen meetings with clear goals and plans are worthwhile.

The world is definitely a different place. But within those differences is the comfort of knowing that the diabetes world – the diabetes advocacy community – has absolutely not stopped doing what it does best. As I stood in corridors speaking with people and plotting and planning, or took the stage to chair a session, or caught up with people after hours on rooftops, I realised that it’s going to take a lot more than a global pandemic to stop the passion and dedication and determination of those who have one thing in mind and one thing in common: improving lives of people with diabetes.

DISCLOSURE

My flights and accommodation have been covered by #dedoc°, where I have been an advisor for a number of years, and am no working with them as Head of Advocacy. 

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

Before the world changed, I was in Qantas’ top five per cent of travellers. They told me this in an email, as though it was worth celebrating – they actually used the word ‘congratulations’ in the opening paragraph. To me, it just represented all the time I spent on aeroplanes. In 2019, I did ten long-haul flights for work and one for pleasure. I couldn’t tell you how many domestic flights I took but suspect it would be close to fifty. I had a tally at one point of the number of airbridges I’d walked but stopped counting when I got to 100 because I was feeling sad about it. 2020 was shaping up to be the same, but then that global pandemic thing happened and grounded pretty much all flights in and out of Australia. And me along with them. 

But before then, I was what you would call a seasoned traveller. I could pack in ten minutes, while going through my mental checklist to make sure I had all the diabetes supplies I’d require, as well as regular-people things. I was brilliant at calculating future time zone gymnastics so I wouldn’t find myself woken at 3am with an expired sensor or empty pump reservoir. 

I had my airport routines timed down to the minute. I knew I needed a cab at my house exactly 60 minutes before a domestic flight. That would give me enough time to breeze through the express security aisles, walk straight into the Qantas Business Lounge, order a takeaway coffee, walk to the gate, and get on the plane, just in time to watch the Qantas safety video that (lied) told me there was good coffee onboard. 

International flights needed a little extra time. I’d arrive at the airport no more than 90 minutes before flight time. Speed through the First Class check in (no, I was not flying first class, but Platinum status – thanks to all the flying – meant I was treated as though I was. At least until I boarded the flight!), dive for the shortest e-passport queue and speed-walk through duty free and find a window seat in the First Class lounge and wait for my flight to be called. 

I was that person at the airport who could tell which queues were moving quickest, understood that unpacking laptops/phones/removing jewellery PRIOR to getting to the front of the queue kept things moving, knew the best seats in the lounge, was recognised by lounge staff (the Qantas Business domestic lounge baristas knew my coffee order; I could easily get a pre-flight massage in the international lounge). Flying was tedious, tiresome, and far too frequent, but I had it worked out.

Right now, I’m at the airport, about to board an international flight for the first time since I returned home from ATTD in Madrid in February 2020. Getting to this point has been stressful. 

I’m terrified of people and I’m guessing there will be some on the plane with me. I don’t like my new passport photo. I’m beyond terrified at the thought of being away from home. I’m scared about getting COVID and not being able to return home. I’m confused about COVID requirements. I’m concerned about diabetes being a shit while in transit, even though that’s really not something I’ve had to contend with in the past. I’ve been worried all week that I’ve forgotten how to travel!

It took me forever to work out what to pack. I checked, double checked and triple checked diabetes supplies, packing them, and then unpacking them over and over. I couldn’t work out which charging adaptors I needed. I finally shut my suitcase, (after spending an age deciding just the right one to use), which I know has far too many changes of clothes, but I’ve lost the knack of throwing together a ‘conference capsule’ of just the right things to wear for just the right number of days. 

I couldn’t remember the layout of the airport – I walked by the elevator for the lounge and somehow found myself at a deserted part of the airport before I realised I was lost. I was worried about crazy-long airport queues but was pleasantly surprised at the efficiency of the whole check in process, so probably didn’t need the extra hour I gave myself to make sure I wasn’t running late.  

I feel like one of those people at airports who holds up everyone else because they don’t know when to have their passport ready and open at the right page, or their shoes off, or to unload everything from their pockets before going through the scanner. You know, one of those people that used to drive me to despair back before the world changed. 

As it turns out, the whole process of getting through security and passport control was effortless. My pump, CGM and OrangeLink were barely noted during the security pat-down. The only difference with 2022 travel as compared with 2020 travel is that I’m sporting a pink mask and had to show my vaccination certificate. I walked into the Qantas Lounge and was greeted with a ‘Welcome back’, and I nearly burst into tears. 

I can see my plane out the window from the lounge (I still remembered where the best seats are!) and have had my last Melbourne coffee for a week. I managed to deal with a little hypo (thanks to all the extra steps from getting lost!) without too much drama. It all feels oddly familiar and completely alien at the same time. 

In just over 25 hours, I’ll be in Barcelona. A real life conference seems so strange still, but I have a feeling that muscle memory is going to be strong there, and being around an incredible network of diabetes advocates (follow the #dedoc° voices!) is going to be an endless source of support and inspiration. Through it all – the anxiety and the stress of getting to this point – I’m so excited! Let’s see what ATTD 2022 has in store!

New passport!

DISCLOSURE

My flights and accommodation have been covered by #dedoc, where I have been an advisor for a number of years, and am no working with them as Head of Advocacy.

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

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