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I’m not alone in being fascinated by artificial intelligence and how it can be used in day-to-day life, including day-to-day life with diabetes. Every day there is more and more published about how it can be applied in healthcare and there’s a lot to be excited about.

Of course, it has its limitations. When I asked ChatGPT to manage my diabetes for the day, the response I got was disappointing:

I’m sorry, but as an AI language model, I’m not capable of managing your type 1 diabetes or any other medical conditions. Please note that managing diabetes requires careful monitoring of blood sugar levels, regular medication administration, and attention to dietary and physical activity habits, among other things.

Not really useful – and just a little patronising! – but I guess managing a chronic health condition that requires minute-by-minute consideration, frequent complicated mathematical calculations and constant monitoring is complex. If only there was some sort of technology that could automate aspects of diabetes and reduce its daily burden. Oh… wait!

But I wondered what ChatGPT might put together if I asked it about the importance of community and lived experience engagement in diabetes advocacy and here is what it said. (I’ve copied and pasted the exact response from my prompt, with my edits in italics.)

Prompt: Is it important to centre lived experience in diabetes advocacy efforts? Thank you!

Diabetes is a chronic illness (condition) that affects millions of people worldwide, and its impact on daily life is often underestimated. While medical professionals (and researchers) have made great strides in understanding and treating diabetes, the experiences of people with diabetes are often overlooked in discussions of the disease. (True, AI friend. True.) This is why centering lived experience in diabetes advocacy is so important. (This! A thousand times this!)

Lived experience refers to the unique perspective of an individual who has experienced a particular issue, such as diabetes. When it comes to diabetes advocacy, lived experience is critical for a number of reasons. Firstly, people with diabetes are the experts on their own experience. (Damn straight we’re experts! Louder for people in the back!) They understand the daily challenges and obstacles that come with managing this chronic illness (condition). By centering their experiences, we can gain valuable insights into what needs to change in the healthcare system and broader society to better support people with diabetes. (Twenty-one years of advocacy summarised in that last sentence!)

For example, someone with diabetes might be able to provide important feedback on the design of medical devices, such as insulin pumps or continuous glucose monitors. (Oh, hells yes!) They might be able to identify usability issues that would be missed by a team of engineers who do not have diabetes themselves. By incorporating the experiences of people with diabetes into the design process, medical devices can be made more user-friendly and better meet the needs of those who use them. (We can point to the brilliant folks who have developed open source AID systems to demonstrate this point! )

Secondly, centering lived experience in diabetes advocacy helps to promote empathy and understanding. When we hear firsthand accounts of what it’s like to live with diabetes, we are better able to put ourselves in someone else’s shoes and understand the challenges they face. This, in turn, can lead to more compassionate and effective care. By understanding the daily realities of life with diabetes, healthcare professionals can provide more personalized and patient-centered care. (Yes we can!)

Similarly, when policymakers hear from people with diabetes about the impact of policies on their lives, they are better able to make decisions that take into account the needs and experiences of those who will be affected. (I believe there might be a hashtag for this. Something like #NothingAboutUsWithoutUs) For example, if a policy change would make it more difficult for people with diabetes to access affordable insulin, those with lived experience could explain the real-world consequences of that change and advocate for alternative solutions. (Hello to the incredible community advocates who instantly busied themselves, organised, lobbied, donated their time and put in the hard yards to kick start advocacy efforts that resulted in a 6 month reprieve for Fiasp remaining on the PBS here in Australia!!)

Finally, centering lived experience in diabetes advocacy can help to reduce stigma and raise awareness. (Absolutely! Look at the amazing advocates who have been writing and speaking about stigma FOR YEARS, which resulted in it being put on the policy and research agenda!) Diabetes is often seen as a disease (condition) that can be managed with diet and exercise alone, which is not always the case (never ONLY diet and exercise – there’s a lot more to it!). By sharing their experiences, people with diabetes can help to dispel myths and misconceptions about the disease. They can also raise awareness about the emotional toll of living with a chronic illness (condition), including the fear and anxiety that can come with managing blood sugar levels. (YES! Effectively explaining the emotional toll or living with diabetes needs to come directly from those with lived experience. Cosplaying diabetes is a very poor substitute to hearing from those actually doing diabetes.)

In conclusion, centering lived experience in diabetes advocacy is essential for improving the lives of people with diabetes. (100%) By incorporating the perspectives of those who have firsthand experience with the disease (condition), we can gain valuable insights into what needs to change in the healthcare system and broader society to better support people with diabetes. We can also promote empathy, understanding, and awareness, ultimately leading to better care and improved outcomes for people with diabetes. So, let us listen (yes – do!) to those with lived experience and work together (and be led by PWD) to create a more inclusive and supportive world for people with diabetes.

-End

ChatGPT managed to pull together the case for centring lived experience in diabetes advocacy in 30 seconds. This is thanks to decades of work from advocates from around the world who continue to live, sleep, eat and breathe the #NothingAboutUsWithoutUs mantra. And this is really promising to me, because it seems that if AI has learnt this is true, then there’s hope for everyone else out there to reach that point too!

When I look back over 2022, it’s been a year of remarkable highs. From improved access to diabetes tech in Australia, extraordinary community alliances for initiatives such as spare a rose for Ukraine, and community-based activities reaching new heights, I feel that I can say goodbye to the year feeling that big things happened! And so, a little Interweb Jumble of this year’s highs. As well as some endings and new beginnings…

Tech access in Australia

After almost fifteen years of advocacy, Australians could celebrate with the introduction of CGM for all people with type 1 diabetes in what must be one of the most equal and simple access programs around the world. I’ve written before about the hoops required PWD need to jump through to get access to tech – even when it should be simple. With the NDSS CGM Initiative, there is one hoop and one hoop only – a form signed, and signed once only, by an HCP. 

As if that wasn’t enough, some sort of miracle occurred, and Omnipod was added to the NDSS. I have been involved in discussions about Omnipod for well over a decade now, trying to massage models of access to fit a system that simply didn’t comply. Congrats to the Omnipod Australia team, and truly remarkable community engagement to make funded Omnipod a reality for Australians with type 1 diabetes. 

These celebrations are all worthy, but it’s always worth remembering that there are still huge numbers of people with diabetes who would benefit from tech and are not eligible. Those cohorts need advocacy and community support to make it a reality, and I can’t wait to see just how that all rolls out – hopefully sooner rather than later. 

And now we turn to NZ…

Great to see efforts increasing in New Zealand so our friends across the Tasman have access to funded CGM. Just before I flew to New York, I presented (virtually) at the ‘Transforming Lives: 100 Years of Insulin’ event held in New Zealand Parliament about community, grassroots and organisation advocacy to make the dream a reality. 

#LanguageMatters keeps going from strength to strength. 

The language matters movement has continued to grow, with new statements and documents launched across the world. I spoke at so many different events and webinars about language and communication and how to do better. Every little improvement, every little step towards reducing stigma is a step in the right direction. 

The Diabetes Language Matters website is a brilliant resource that pulls together what’s going on around the world in one place. Massive kudos to Jazz Sethi for coordinating this work and keeping it updated – which is more than impressive when you consider just how far reaching the movement is now!

Ah, so that’s what you look like in real life?

As the world opened up again, and international travel slowly returned, face-face conferences started up again. It was with a mixture of fear, anxiety, and excitement that I jumped on a plane for my first international flight after a long time to chair the first ever lived experience symposium at ATTD. What a treat to be back around peers with diabetes who I’d only seen through Zoom screens for well over two years. I was just thrilled people recognised me without the rainbow bookshelf as my background.

#dedoc° spearheads lived experience presence at diabetes conferences

The #dedoc° voices program meant that most diabetes conferences had a visible, vocal, and very real lived experience presence not only roaming the corridors, but also on stages, in meetings and across social media more than ever before. It was truly remarkable to see people from across Europe, Asia, Africa the US, and Australia dominating social media leader boards, and building networks for collaborations, many of which are already delivering. See the #dedoc° website for more.

By the community for the community

Spare a Rose returned this year with a new name (Spare a Rose, Save a Life) and a new charity partner. And once again, we saw people with diabetes dig deep and jump on board to be part of the campaign. With war breaking out in Ukraine at the end of Feb, the SaR team pivoted quickly and literally overnight with a new, refocused operation to support people with diabetes affected by the war. Over $400,000 was raised by the community, all through social media promotion, and so, so many with diabetes doing the right thing and getting behind it. 

And over November, #dedoc° led the charge for another community campaign – the Blue Balloon Challenge, which resulted in €100,000 donation from Medtronic to Life for a Child. If you want to see how amazing the community can be, all you need to do is see the hundreds of social media posts featuring blue balloons. It also is a great way to flag people who are doing things for others, uniting the community. Want to know who to follow? Follow those supporting community campaigns. 

New communities

I know I have written about the weekly Diabetes Chat before, but I’m going to do it again, because any initiative that is welcoming, inclusive and fun for people across the community deserves a mention. You just need to see how diverse the weekly participants are to know the agenda set by Tom Dean and others behind the scenes – and that agenda is to create a safe space for all. I was beyond thrilled to be asked to speak at one of the first Spaces events, and even more thrilled to meet Tom in person at the #dedoc° symposium at ATTD. I know a number of people who said that they returned to participate in DOC discussions because of the weekly Spaces Chat. How special is that? Details on the Diabetes Chat website.

Global happenings

The WHO Global Diabetes Compact Forum has continued this year, ending on a high with the team publication of an article about language. It’s really worth commending the WHO for the way they responded to earlier criticisms about diabetes comms. They listened and engaged the community and this year for WDD, delivered a brilliant campaign, and hosted a terrific Spaces event they kindly invited me to be part of. I feel really lucky to know James and the WHO team working in the area of diabetes and know that they are just warming up!

IDF Congress

The conference year ended with the IDF Congress in Lisbon, which saw the Young Leaders in Diabetes Program return to the force it once was with some of the most incredibly young advocates I’ve ever had the pleasure of meeting. I can’t wait to see what they get up to!

The greatest honour …

The high to end all highs for me professionally this year was giving the Living with Diabetes Stream Award Lecture at IDF and I was so pleased to be able to use the lecture to recognise the importance of lived experience, and share how #NothingAboutUsWithoutUs became the basis of my own advocacy.

But it wasn’t only those with lived experience that I acknowledged in my lecture. I took the opportunity of standing at the lectern in Lisbon recognising the incredible allies who have supported me, and others. I started with Greg Johnson, CEO of Diabetes Vic and then Diabetes Australia whose simple words ‘If we’re talking diabetes there must be people with diabetes in the room’ have resonated each and every day in my advocacy life. And then, I moved onto people like Jane Speight, Taryn Black, Partha Kar, Sof Andrikopolous, Nat Wischer, Tadej Battelino, Chantal Mathieu, Ann Morris, Marg McGill, and the late, great, and so, so missed Tricia Dunning, who have elevated the role of lived experience, making space on stages, handing over microphones and creating places so that people with diabetes are able to influence in real, meaningful and significant ways. It was an honour to look up and see many of those people in the audience.

… and a big decision 

In amongst all the highs, I decided it was time to make some big decisions. After twenty one years working in Australian diabetes organisations, I have decided that it is time for me to move on. Diabetes Australia has been my home for the last seven years, and Diabetes Vic (part of the Diabetes Australia family) launched my diabetes advocacy career fourteen years before that. My roles at both organisations have shaped my advocacy so much. They gave me a true understanding of the value of grassroots advocacy and just how vital community is in that advocacy. Greg’s words continue to ring in my ears, and I doubt there will ever be a time they don’t. And it’s those words that helped me make decisions about what I need to do next.

I walked into Diabetes Vic not knowing what diabetes advocacy was. I thought I’d spend six months doing the job while I worked out what I really wanted to do with my life after deciding that being a classically trained flute player really wasn’t it. 

As it turns out, diabetes advocacy and activism is what I wanted to do with my life for those six months, and the twenty plus years after that. And it’s what I want to keep doing now. In the new year, I’ll finish up at Diabetes Australia and then take on a role that will see me working beyond Australian borders, and, most excitedly, with a focus on community advocacy and engagement. I simply can’t wait.

But for now, I’m celebrating the big year that was in NYC for another couple of months, hugging my family, hoping for snow, visiting holiday markets, listening to jazz, and finding warm corners of historic hotels to write and drink tea. All while looking forward to bigger and brighter things to come.

DISCLOSURES:

I work for Diabetes Australia and have been involved in advocacy efforts for CGM for All.

I was invited by A/Prof Ben Wheeler from University of Otago and Te Whatu Ora Southern to speak at the New Zealand event about CGM funding and volunteered my time. 

I am Head of Advocacy for #dedoc°. Flights and accommodation for attendance at ATTD and EASD was covered by #dedoc°. Press passes were covered by the conference organising committees.

I am a volunteer for the Spare a Rose campaign. 

I am a co-author for the WHO journal article mentioned. I volunteered my time to be involved in this work. 

I was an invited speaker at the IDF Congress. I was also invited to speak at the Young Leaders in Diabetes Training Summit. I was not paid for my work with the group. Flights and accommodation were covered by the IDF.

Recently, I shared some good news that I was finally ready to release into the wild after sitting on for a few weeks. 

And so, a tweet and a LinkedIn post later, I’d happily shared that I’ve been invited to give the Award Lecture in the Living with Diabetes Stream at the IDF World Congress in Lisbon later this year. When I talk about standing on the shoulders of diabetes advocacy giants, two of the previous Awardees define community and advocacy. I still can’t believe that anyone would consider me to follow on from Riva Greenberg or Manny Hernandez, who gave the lecture in 2015 and 2019 respectively. 

I was overwhelmed by the messages of support and congratulations from friends and colleagues, many from the global diabetes community, a couple from my own workplace – by and large people who know diabetes. But also, from those without diabetes too who acknowledged how honoured I would be feeling to be recognised in this way. 

But there was one comment that stood out and that was from one of the most dynamic, influential, and impactful diabetes advocates I know, Dr Sana Ajmal.

Sana’s message was this: ‘Thanks for being unapologetically yourself! That’s what truly defines your activism. Looking forward to it!

I stopped when I saw it and read it a few times over. 

I often describe my style of advocacy as bolshy. Others have said I take no prisoners in my resoluteness. A former manager once said (I think affectionally) that I step off my soapbox only to climb onto my high horse. And I also accept that being unapologetically myself – and unapologetic in my approach – doesn’t always sit well. But Sara used the word so generously, which is probably not how everyone would see it…

I have been unapologetic in my attitude and determination. I’ve been unapologetic in the sheer doggedness I’ve employed over the last 21. I’ve been unapologetic for challenging the status quo and demanding that things change. I’ve been unapologetic in the issues that I have claimed are important to me. I’ve been unapologetic at sounding like a broken record and appearing a one trick pony when I’ve repeated over and over and over again that language matters, that peer support works, that people with diabetes have a right to be in the room and centred anytime diabetes is a topic of discussion. I’ve been unapologetic in the way I’ve challenged people – from HCPs, policy makers, diabetes organisations, industry – asking them to all do better for and by people with diabetes. I’ve been unapologetic in my fury against misogyny and the patriarchy in healthcare. 

I’ve been thinking a lot about what I plan to say when I give the Award Lecture at the World Diabetes Congress. I have decided on the theme of the talk, and it will come as no surprise to anyone that I’ll touching on successes and challenges of advocacy. When I get to thinking about what a massive enabler of my work in this space has been, there is something I keep coming back to and that is the remarkable leadership of remarkable people I’ve been fortunate enough to encounter. I’ve learnt so much from the advocates who came before me. The barriers they broke down to do what many of us now do, and the grace, confidence and, often, brazenness they needed to push through is nothing short of inspiring.

And it’s been the extraordinary curiosity and bravery displayed by those without diabetes. I will forever be grateful for the way those people never asked me to apologise, never tried to stifle my voice, never tried to centre themselves over the community and always – always – included lived experience and were led by our needs, willing to be uncomfortable when they were challenged. They are the leaders who understood our expertise and made sure it was included when diabetes was on the agenda. And understood how they could learn from it. They define the idea of diabetes allies!

I’m thrilled that I’ll have a chance to stand up at an international conference and talk about why #NothingAboutUsWithoutUs is the foundation of my advocacy and activism and how, most unapologetically, I’ll never change that.  

My new diabetes spares bag has my name on it.

I wrote a post many years ago taking the piss out of wanky ‘My day on a plate’ articles, or, as I renamed them, ‘My lie on a plate’. If you’ve ever read one of these (in Melbourne it’s a regular article in the magazine that comes with a Sunday paper) you’ll find some ‘influencer’ or celebrity who swears all they consume is hot water and lemon, steamed line-caught salmon, and organic kale and quinoa.

This is, obviously, the extreme of the ‘look how virtuous my eating is’ spectrum. Because that is what eating is all about, right? – virtue and honour and showing just how ‘good’ we are because we are all about fresh, healthy, green, CLEAN. (For the record, all food is clean. Unless it’s been dropped on the floor, and I’m not here to judge anyone’s commitment to the five second rule.)

I know I’m guilty of it too. I frequently share online the details of the food I’m making, planning to make later today, thinking of making in the future, eating, planning to eat later today, thinking of eating at some point. And that shared food is, inevitably, on the healthier side. Or the homemade side. Or the this-plates-up-beautifully side. I make hyper-lapse videos of the baking I do each week and share with friends and family and while it’s a little fun, there is a tiny part of me that knows how performative it all is. ‘Look at me in my kitchen whipping up some delectable goodie that is going to make its way into my kid’s lunchbox this week, because I’m not the sort of mother who would EVER deign to chuck in a fun size Milky Way!’

Really, I want to tell myself to fuck off sometimes! (And on the occasions my kid does get a Milky Way in her lunchbox she couldn’t be happier.)

As someone who does indeed love food, loves to cook and loves to share (online and IRL) my creations, I understand the allure of getting excited at asparagus season and only buying and cooking it at that time of year. But expecting everyone else to do that and judging those who don’t is pretty crappy. I know I’ve been guilty of it – if not explicitly, at least implicitly.

I’ve heard myself talk about how easy, quick and cheap it is to throw together soup, and how there is no need to do a fast-food run, because why would you need to when tossing together some onion, garlic, veggies out of the fridge, a couple of chicken legs and some small pasta (obviously in a Le Creuset pot because of course I am also wanky when it comes to cookware) and then sprinkling parsley on top and serving up with some crusty bread? 

Man, there are a lot of assumptions there (even if we take out the need for heavy French cast-iron cookware). There is the assumption of people having those things in the house, and the know-how of just how to throw it all together. There’s an assumption that people want to make soup. There’s an assumption that people want to eat it. 

It doesn’t sit right – and is also all shades of hypocritical of me to be this way – when you think about how very vocal I’ve been rallying against sectors of the community who like to badger people with diabetes about not eating carbs (or whatever other militant food rules they have), and criticise people who choose to eat in different ways. 

It is all very well to tell people to eat fresh, grow your own where possible, shop at farmers’ markets, eat only what is in season, consider food miles, shop local, buy good quality and make everything from scratch. And then to demand that if people absolutely must venture into a supermarket, the rule is they must only be allowed to show on the perimeter – where the fresh foods live, while also banging on about how processed foods, ready-made meals, pre chopped fruit and vegetables, frozen and tinned foods are inferior and if you are truly treating your body like a temple, you wouldn’t go near it.

I’m tired just typing that. And it’s so freaking ableist, privileged and full of presumptions to consider that this is the only way to think about food.

There is nothing wrong with buying prepared food – whether it’s prepared food for babies, kids, or grownups. Prepared meals are just as valid an option as meals made from scratch. Prepared cakes work just as well for a celebration as one that has been baked in your oven. Packet cakes and biscuits are a shortcut that make things easier. Some people may prefer the taste of pre-prepared foods, which is as good a reason as any for deciding what and how to eat. 

There is nothing wrong with purchasing pre-chopped fruit or vegetables. They are still fruit and vegetables, and a fabulous alterative for people who are in a hurry, really don’t enjoy chopping up foods, or find it difficult to wield a knife. Or for people who just grab a bag because that’s what they want to do! 

There is nothing wrong with using frozen or canned vegetables rather than fresh. They are convenient, more readily available in rural and remote areas, often more affordable, super easy to whip up, and full of nutrients. Sure, it looks gorgeous on an Instagram feed to show freshly picked tomatoes from the plant growing in your front garden, and then offer a step-by-step photo guide of how you turned it into organic-vine-grown-homemade-truss-tomato soup, but some Campbell’s tomato soup also works! And, hey, it was good enough for Andy Warhol…

For the record, it’s not just social media over-sharers who need to be reminded to check our privilege. Often, dietary advice from health professionals and health organisations seems to think that everyone has a community garden over the back fence, and the time, interest, and know-how to not only plant year-round crops, but also then prepare healthful meals with it. Processed foods are usually an afterthought and deemed not as good for you. Assumptions are made about cooking capabilities, cooking utensils, time and all the other factors that go into working out what to put on the table for dinner. 

We need to move away from the utopian world that looks through the lens of everyone having gone through a school with a Stephanie Alexander Kitchen Garden program, a dedicated cook at home who is able to do ‘All The Right Food Things’, a budget that never needs to consider the cost of food, and the idea that everyone is harbouring secret ambitions to win MasterChef, and living with grand delusions of Nigella Lawson (hand raised right now). Because that’s not the reality for most people. 

Some people seem to think that if you are interested in DIY Diabetes you must be looping.

This is not the truth. At all. In fact, a lot of people who are really interested in the whole movement have made a very conscious and well-informed decision to not DIY themselves. There are a multitude of reasons for this, but they can all be filed under the banner of ‘My Diabetes; My Rules’.

(Let’s get out of the way the critically important point that for most people, the concept of DIYAPS is not even an option. When struggling to access the most basic of diabetes technology and drugs, the very idea of building a DIY system to automate insulin delivery does not even figure into one’s diabetes management plans. However, I am talking about people who are fortunate to have the choice to loop or not to loop, and choose not to.)

Last week, I was invited by the Danish Diabetes Academy to speak at an event they were running about the Diabetes Do It Yourself movement. I’d been asked to speak about how and why Diabetes Australia had become the first consumer/patient organisation to develop and launch a position statement on DIY technology solutions. More on that another time.

The day opened with a presentation from Bastian Hauck, and he could not have set the scene better. To start with, he challenged everyone’s idea of just what technology is. He showed his brand of tech: a reusable insulin pen, a glucose meter, and an explanation that he usually uses CGM with it. No pump. No automation. No integrated system. No DIYAPS.

Does this make him a luddite or anti-tech? Does this mean that he has no interest in or idea of DIYAPS, or that he is suspicious and opposes it? Of course not. It simply means that at this point in time, he has worked out what works best for him and his diabetes, and that’s what he is using. Sounds pretty sensible to me.

Bastian also drew everyone’s attention to the point I made in the first paragraph of this post: pens (or syringes) and a BGL meter are what the vast, vast majority of people are using to manage their diabetes. The people in the room and those involved in DIY tech are a minority. A very privileged minority. And we must never forget that.

I actually think it’s great when we have people actively involved in the #WeAreNotWaiting world using a variety of management solutions because it means we don’t get caught up only hearing the perspectives and opinions of those who are looping. We can be an evangelical lot, and remembering that there are others doing perfectly well (and are perfectly happy) doing what they have been doing is important.

What we don’t need is people who really don’t understand the systems claiming the reasons they steer clear is because DIY systems are unregulated and therefore unsafe, or other motives that are pretty damn inaccurate. No one needs to justify why they have or have not adopted certain diabetes management options, but it would be good if they didn’t point to reasons that are not especially truthful, perpetuating claims that only serve to scare people. (And anyone who is using this last weekend’s FDA warning about DIY systems to claim that their concerns are warranted should read this post from Katie DiSimone for some context.)

For every Dana Lewis (who gave an overview of her own story, and a typically brilliant explanation of just what OpenAPS is and how it came about) there are others who simply are not interested. And that is perfectly fine!

One thing that both Bastian and Dana reminded everyone is this: ALL diabetes is DIY. It is 24/7 and we do it ourselves for day to day. Call it what you want – DIY or off-label diabetes – it’s just diabetes. And we have no choice other than doing it ourselves.

 

DISCLOSURE

The Danish Diabetes Academy invited me to speak at the Diabetes – Do It Yourself conference in Copenhagen. They covered by (premium economy) flight home from Copenhagen and three nights’ accommodation and expenses.

Schiphol International Airport is one of the busiest transit hubs in Europe. The train station and airport merge into each other and there are people everywhere.

It’s bright and early and I got off the train from Nijmegen where I’d been for the HypoRESOLVE AGM. A 6.28am train does not make me a happy lass, so I was dreading negotiating an airport that is quite manic before 9am on not enough coffee.

Dropping off my suitcase was easy and I had a boarding pass. Security was the only thing stopping me from sitting down and having more coffee. Standing in line, I started the familiar dance of getting myself ready to pass through the security area. I pulled my laptop from my bag, removed my Apple Watch and medical ID bracelet; my leather jacket came off and I unwound my scarf from my neck.

‘Good morning,‘ I said to the person directing the traffic to the different gates. ‘I can’t go through the full body scanner – I am wearing some diabetes devices that can’t go through. I think I’ll need a pat down.’

‘Not a problem,’ he said. ‘I’ll organise someone. You can have a full massage!’ He smiled cheekily at me.

‘Great,‘ I said. ‘A manicure and pedi would be wonderful too.’ 

He laughed and directed me through to the woman waiting to do my pat down.

I greeted her, still smiling. ‘I’m wearing medical devices. I have one on my arm,’ I signalled to my Dexcom. ‘And two here.’ I pointed to where my pump and RileyLink were comfortably housed in my bra.

She started to pat down my arm. ‘I can lift my sleeve,’ I said. ‘It’s a glucose monitor.’

‘Oh,’ she said, stopping for a minute. ‘You have diabetes?’

‘Yes, I do,’ I said.

‘So does my son. Type 1. He was seven when he was diagnosed. He’s eighteen now.’

‘I have type 1 too.’

‘Do you need to see my insulin pump?’ I asked as she resumed patting me down.

‘No – it’s fine,’ she said. ‘My son doesn’t use a pump. He’s a teenager. Diabetes isn’t the most important thing to him.’

‘It’s not to me either,’ I smiled at her. ‘It’s not all that much fun.’

I looked over to my travel companions who were making their way through security.

‘My friends over there also have type 1,’ I said. ‘Having friends who understand helps a lot.’

‘Like a diabetes club,’ she said. She had finished now and we were just standing there chatting.

‘Not a very cool one, and not really one that I want to be part of. But yes,’ I looked carefully at her. She had that look that I see anytime I connect with someone from our diabetes world. A bit of sadness; interest in talking to others who know, and hope. Always hope. ‘I hope your son is doing well.’

‘He is. He has some friends with diabetes. It does help.’

We said good bye and I was joined by my band of friends. And we went to get more coffee.

DISCLOSURE

My flight to Amsterdam and train travel to and from Nijmegen have been covered by the HypoRESOLVE project.

I’m in beautiful Nijmegen in The Netherlands for a couple of days for the AGM of the HypoRESOLVE project. We’re in the midst of a very busy time of meetings, updates, sessions about data and statistics (my jet lagged brain is doing its best to keep up!) and discussions about just how significant hypoglycaemia is to people living with diabetes.

Here’s what I wrote after the kick off meeting twelve months ago. The project has made lots of progress and there will be more about that as it all comes to hand. But in the meantime, here’s what happened back in May last year in Copenhagen when the project was launched. (My disclosures remain as per the end of this post.)

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I’m back from a very busy week in London and Copenhagen. I arrived back in the door at home exactly two minutes after Harry and Meghan got hitched, so I missed the whole happy occasion. If only we had some sort of magical way to see photos and videos and relive beautiful experiences like that. Oh well, never mind.

The main reason for my trip was for the kick-off meeting for Hypo-RESOLVE, a new four-year project focusing on better understanding hypoglycaemia. I’m there as part of the Patient Advisory Committee (PAC), which is made up of advocates from across Europe. Obviously, it is now legislated that an Australian also be included in any European diabetes advocate activities. I believe it’s called the Eurovision Law.

The project is made up of eight work packages, each led and staffed by leading European diabetes researchers and clinicians, and after seeing just who was going to be in the room, I suddenly was struck down by the worst case of Imposter Syndrome I have ever experienced. This didn’t get any better when I was told that the presentation I had been asked to give was not only for the PAC. No – it would be in front of all eighty project participants. I looked at the list of who I would be standing up and speaking to, and cursed the meme- and photo-filled presentation I had prepared, wondering if I could pretend to understand statistics and graphs, and add some to my slide deck to at least try to sound smart.

I decided to stick with what I knew (memes, cartoons, photos of weird hypo tales), and left the slide deck as it was, hoping against all hope that I would manage to keep myself nice, and sound as though I understood what I was speaking about.

I was asked to give a talk about the real life experiences of hypoglycaemia. Fortunately I have kept a pretty good record of the literal lows of my diabetes (which, incidentally, was the title of my talk). Thanks to the search function on Diabetogenic, I was able to easily pull together a number of stories about the lows I’ve had. This proved to be more useful than I realised because these days, lows are few and far between. Since I started Looping, I’ve not had the sort of low that has made me want to write about it and try to analyse what it all means in my diabetes life. In fact, I’ve not had any lows that have required anything more than a mouthful of juice or a couple of fruit pastilles to treat.

Reading back through my blog posts was actually really quite confronting, and I found myself getting emotional as I read details of terribly scary lows and how they had impacted on me – in the moment, and in the days following. As I read, I remembered the anxieties I felt about something happening while low that would seriously affect my family.

I’ve not asked them, but I wonder if the fact that I have so few hypos these days makes Aaron and the kidlet feel calmer about my diabetes. They still see me sucking on a juice box every now and then, but it is done without urgency, and without the look in my eyes that betrays the calm I used to try (and fail) to convey.

In my talk, I really tried to express just how significant hypos have been in my life with diabetes. I tried to explain that even once a low is ‘fixed’ there are often residual effects – effects far beyond just trying to work out what my glucose levels would do after playing the how-low-can-you-go-hypo-limbo.

I spoke about how the emotional fallout after a nasty hypo can be crippling, leading me to second guess every diabetes decision I made, wondering what I had done to cause the low in the first place – because that is the ongoing narrative of diabetes….we did something wrong to cause the hypo (or the complication, or the high, or the technology failure). And I really tried to explain how sometimes there are no answers, no matter how hard we look, or how desperate we are to find something to blame.

Of course I spoke about the language of lows and how the words we use impact on the way that hypos are considered. There is no doubt that ‘severe’ hypos are serious and need urgent attention and investigation, but so-called ‘mild’ hypos can be just as burdensome.

Obviously, everyone’s hypo stories will be different and I took great pains to clarify that I was speaking of my own experiences only. In the past, hypos have terrified, paralysed and alarmed me. I was afraid to sleep, I was afraid of lows when awake. I was scared I would have a particularly nasty low around my daughter and scare her. I am fortunate that my deliberate non-compliance has resulted in almost no lows, and feeling safer that I have ever felt before. My fear of hypoglycaemia is manageable these days, yet I don’t take for granted that it will always be like this. I still carry hypo food around with me – there is no point tempting the hypo gods by not being prepared!

I’ll be writing more about Hypo-RESOLVE in coming days. I’m so pleased to be involved in such an exciting and interesting project; I’m honoured to have been selected for the PAC. I’m beyond thrilled that PWD are included in the DNA of the project – right from the kick-off, not brought in at the last minute for comment when all the decisions have been made. And mostly, I am grateful that hypoglycaemia is being given the attention it deserves. I honesty hope that one day no one ever needs to feel the panic and fear that so many of us have come to know.

MORE:

You can read all about Hypo-RESOLVE in the  Innovative Medicines Initiative media release from last week announcing the launch of the project.

DISCLOSURE

My flights and accommodation to attend the Hypo-RESOLVE kick off meetings were funded from within the project. PAC members are volunteers on this project.