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.

What were you doing 15 years or so ago? I can’t tell you what I was doing at exactly this moment back then, but I can tell you that it is when I started working on getting CGM access for all Australians with type 1 diabetes. Back then, CGM was relatively new here. It was only used by people with type 1 diabetes and, just as now, the out-of-pocket expenses were significant. But, we knew that there was emerging evidence to show that this tech was life-changing, and we knew that there was no time like right then to start discussions about what a funding scheme would look like. 

When I talk about the slow burn of diabetes advocacy, this is what I mean. We’ve had wins along the way, but until this morning, it’s understandable that a lot of adults with type 1 diabetes felt quite forgotten with the subsidies that were available.  

But today we’re celebrating. In a big way. We started working on the announcement yesterday when we heard that there would be an announcement today – #CGM4All was moving from just being a hashtag to a reality if the Coalition was returned to government. Within hours of this morning’s announcement, the ALP said they would match that promise. 

Isn’t bipartisanship a beautiful word?

Breaking it down, what does this mean? It means that nothing changes for people who already have access to fully-subsidised CGM and Flash GM through the NDSS CGM Initiative. For those of us who have missed out up until now, the Initiative will be expanded; we will have access to the scheme, and there will be a co-pay. Details are sketchy around that, but the announcement is that the maximum out-of-pocket expense will be $32.50 per month. Right now, those on a subscription for Dexcom G6 would be paying $330 per month. 

So, this is a lot less!

By the way, we’ve been here before. Back in 2016, we had bipartisan support for introducing CGM funding. At the time, the ALP promised funding for all people with type 1 diabetes who met the criteria which was firmly based on clinical need. The Coalition’s promise was for kids, which is exactly what happened when the first iteration of the NDSS GCM initiative became a reality in April 2017. There have been further expansions – for people with diabetes planning for pregnancy and while pregnant, and for those holding a healthcare card. But not for everyone

Back to those first meetings fifteen years ago – this was the dream. #CGM4All. 

With my Diabetes Australia hat on, I can say I am incredibly proud of our advocacy work. I look to the dedicated people who I’ve sat in meeting after meeting after meeting with, modelling different scenarios, workshopping proposals, celebrating the wins, and commiserating the frustrations. 

And with my person with diabetes hat on, I can say that alongside the tears of joy I shed this morning when the bipartisan support was announced, there was relief and gratitude. 

#CGM4All people with type 1 diabetes.  Oh, happy day!

Comment: there are definitely others with diabetes who benefit from CGM technologies. I’m not done until access is equitable. Today I’m celebrating. But then…then it‘s back on the advocacy trail looking at how to support other cohorts. 

Disclosure

I am the Head of Communities and International Affairs at Diabetes Australia. 

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.

Someone asked me the best question the other day and it was this:

‘What is a really important characteristic or personality trait to have if you live diabetes?’

I thought about it for a while. The first thing that came to mind was resilience. The never-ending nature of diabetes means that staying power, strength, plenty of flexibility and being able to push on and through is needed to deal with just the day to day. 

And so, resilience was the answer I gave. 

But I haven’t been able to stop thinking about that question, and I think that I have a better answer. 

Curiosity. 

Being curious is not only important, but it leads to some of the best outcomes and opens doors to aspects of diabetes that I may have otherwise missed. 

It has served me well. Being curious about how others with diabetes were interacting and the opportunities they were creating to build communities is the reason that I delved into the world of online diabetes peer support. I asked a lot of questions to learn about collaborations between industry and advocates to see how our expertise was bring recognised and utilised. From there, I was able to develop those same sorts of activities locally that also had a global bent.

As an advocate, being curious about the experiences and knowledge of others with diabetes living in different places around the world has meant that I have a far broader understanding of the challenges, the successes, the things that work well and the things that don’t, and the health systems of people in the global diabetes community. It has meant that I look far beyond my own perspective, instead learning and asking about others. It is one of the reasons that I am so often invited to participate in advisory groups or facilitate discussions and other initiatives. Those doing the inviting are aware that my knowledge and understanding will never just be that of what’s going on in the Australian sector – I will be able to point them to people in the global community who can provide wider and more diverse experiences. 

I have frequently referred to diabetes as a petulant toddler, but I think that acting like one, with regular sprinklings of ‘But why?’ is often a perfect response when a diabetes therapy is offered. 

Asking ‘But why?’ has meant that I’ve never accepted the status quo or simply done what I’ve been told. I know it has driven HCPs to distraction in the past, but it has helped tailor care to what I need and centres me and my diabetes in conversations. 

Even before that, being curious about how a HCP operates, the way they engage and their interpretation of person-centred has resulted in me connecting with the absolute perfect HCPs for me…and leaving the ones that were not.

Being curious about different technologies was the starting point for me to investigate further and learn from others and ask questions to work out just how those technologies might work for me. I’m not just talking Loop. It was that curiosity that had me seeking out the few people using pumps in Australia back in 2000 to find out just what it meant to wear one. The questions I had couldn’t be answered simply by reading what the pump companies had to offer. I was curious about the realities of pump therapy.

I’ve also come to appreciate curiosity as a trait in others. My own endocrinologist is curious in her approach and the way that she conducts our consultations. Her ‘How are you?’ at the beginning of consultations isn’t a perfunctory question. She uses that as a launching pad to get a good idea of just where I am at, and then listens as I guide the discussion. When I spoke with her about Loop, for example, she wanted to learn more – not dismiss it as a dangerous endeavour. I have appreciated that desire to understand more and her own curiosity because I know it means that 

And the most wonderful GP I ever saw (damn him for moving to bloody Darwin!) had never seen an insulin pump the first time I walked into his office. He asked me about it, but better yet, the next time I saw him, he had read up and had more questions. His curiosity helped expand his own comprehension of diabetes, and I was so grateful that he thought like that. 

Being curious means that there are always more questions to ask, different options to investigate and keeps my desire to learn active. It’s meant that I’ve never settled, always intent on finding out more or difference options. I am curious and I search for curiosity in others because there is still so much about diabetes that I need to understand. Undoubtedly, the best way to do that is when my mind is open and I am curious, and I am around people who have that same open-minded approach.

Click on the tweet to read how others answer the same question. I tweeted it this morning and there have already been dozens of great replies.

Just a few weeks ago, this happened:

Because, for some people, seeing a stranger ‘doing diabetes’ is all it takes to jump right on in and offer a piece of wisdom, when really, the right thing to do is simply look away and say nothing. My response is generally quite brusque, leaving no room for misinterpreting my complete and utter lack of interest in furthering the conversation. 

That experience, along with another intrusion from a stranger yesterday had me wondering why some folks think it’s fine to be so insensitive, and curious about how other people deal with this sort of crap.

Somewhat serendipitously, I stumbled across Up To Us, an art exhibition which is ‘Bringing women together to design the world we want’. The works I’ve already seen shared online all look great – centring women in a way that brings awareness to issues and problems that are relevant to women. But it was the artwork contributed by Unsolicited Advice Project that grabbed my attention. I mean, look at this!

The Unsolicited Advice Project is the creative brainchild of two Australian artists. Their website explains their work like this:

As chronically ill and disabled people, we receive a lot of unsolicited advice. We know people mean well, but it often feels dismissive, unproductive and condescending. There are ways to have more productive and empathetic conversations, and they probably look different for everybody. 

Oh, but isn’t that right?!

You can read all about the The Unsolicited Advice Project here and follow on Instagram here. There is an absolutely hilarious Instagram stories ‘unsolicited advice generator’ effect that you can have a play with too, which churns out advice that is representative of the sort of ‘Have you tried…?’ rubbish that people like to offer.

I’ve taken to stopping people as soon as they utter the three words: ‘Have you tried…?’ because their offerings will be from one of two camps. 1. Something I know about and am possibly already doing; or 2. A meme from Dr Oz Mehmet or Dr Mark Hyman or it involves some ‘wellness hack’ that I have absolutely no interest in hearing about. 

I love what The Unsolicited Advice Project is. I love the way it is using art as advocacy to highlight an issue that so many people with chronic health conditions face frequently and which often adds am additional burden to just getting on with our lives. I love that as people walk through the exhibition and see this, they start to understand how unwelcome many people find this sort of unwanted and uncalled for advice. I love how this might make people think twice about diabetesplaining the health condition I self-manage and inevitably know more about than they do. I love that it might discourage people from seeing diabetes as something for which there is a quick fix.

And I love the idea of this as a conversation starter for the broader community about how to engage people with chronic health conditions or disabilities in ways that generate respect, and are led by the community. 

Follow Diabetogenic on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Read about Renza

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

Archives

Twitter

%d bloggers like this: