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I have a diabetes friend called Andrea. She lives in France and I’ve known her for close to 15 years now. She once told me a hack that she thought Podders should know. I didn’t heed her advice and should have. So, in the spirit of #PayItForward (RIP, Bastian), I’m sharing it here.
Every pod user will be familiar with the pod scream of death. Maybe you have never experienced it yourself, but I expect you will have been told of all the impossibly inappropriate places a pod decides to play the music of its people.
Hopefully, it will be a rare occurrence, but there’s no mistaking the high-pitched scream that emits from a device that usually makes no other noise than a gentle, reassuring clicking sound when delivering insulin.
For me, it inevitably happens when the eight-hour grace period has lapsed and I’ve ignored all the countdown warnings. Be better than me. Don’t do that.
Silencing the piercing alarm is usually easily remedied. A sharp needle shoved into a small hole on the back of the pod usually does the trick. There’s something magical about the peace that prevails after the screaming stops.
The other day, I was working in my office at home, and was startled by the high-frequency shriek. I looked up from my computer screen and started counting hours backwards. Why was the bloody thing screaming at me? I’d changed it only the evening before. I glanced at my phone which showed a beautiful green loop, and tilted my ear towards the pod on my right arm that seemed happily doing its pod thing. It certainly wasn’t shouting at me.
I stood up, looking around for the source of the noise. The banshee wail was coming from the cardboard box on a shelf in my office – the box where my pods rest before being sent off for recycling. (Podders – you do all know about the recycling programme, right?)
I pulled the box down and looked inside. There were about 25 spent pods in there, and one of them was not happy. I worked my way through them, until I found the offending noise maker, and shoved a needle into its back.
I then looked suspiciously at the others in the box and realised that any of them could start screeching at any moment. What if they were influenced by the non-compliant noisy one? What if they decided to do the same thing at 3am? I dumped each of the pods onto my desk and stabbed the lot of them .
And while doing so, I remembered my clever friend Andrea telling me that she always disables the old pod when she’s doing a change. For this exact reason. ‘Smart,’ I thought. ‘I’m going to do that, too.’
Reader, I did not do that, too. I waited until an old pod threw a tantrum because it didn’t like being in the box with other pods and decided to share its big feelings.
In the spirit of sharing diabetes hacks, I am passing on Andrea’s smart advice: disable your pods before you pop them in the recycling box. Do it once you’ve filled up your next pod and you have a sharp needle right there to do it. Make it part of your pod changing process. Don’t leave it until you are frantically trying to silence the little sucker. Future you will thank you. That’s what I’m doing now.
And this is just another reminder of how the most important things we learn are from our friends with diabetes who know all the tips and tricks to make diabetes that tiny bit easier to manage.
I’ve been in India this week for the annual Udaipur T1D Summit. This year, we took the summit to Jodhpur and once again, brought together dozens of people with diabetes, clinicians, researchers, industry stakeholders and policy makers.
One day, we all travelled to Nagaur, a city about three hours out of Jodhpur. We visited a T1D clinic in a district hospital, and attended a day camp for children and adolescents with T1D and their parents. This was for me, undoubtedly, the highlight of this visit to India.
The vast majority of the discussions were in Hindi and the local language. I understood nothing of the presentations other than the occasional words in English that cropped up from time to time. Afterwards, many of the people in the room spoke with me in English, and I had some lovely conversations with children and teens with diabetes, and their parents. I spoke with two young girls and they told me what they liked doing, about school and what annoys them about diabetes. A tiny toddler sat next to me and she was far more interested in the beaded bracelets on my arm than diabetes and really, who can blame her? Diabetes doesn’t compare to bright friendship bracelets! And I spoke with a remarkable young woman who I truly believe is going to change the world. She told me she wants to be a polo player, and I have no doubt that at some point I will find out that she is competing on national and international stages. She told me about how she feels about living with diabetes and her optimism and hope have stayed with me for the last few days. If only every newly diagnosed child with diabetes could connect with someone like her!
Parents spoke with each other, always keeping an eye on their children, but secure in the knowledge that in this room, everyone was looking out for each other.
I watched advocates who have become friends lead the activities, and I was in awe as they managed to show just how much peer support can mean. Jyotsana needs her own TV show – her enthusiasm and spark as she rallied the children was infectious. And Nupur and Snehal, ever calm and grounded, know exactly when to step in and when to step back. And then Prashanth rallied the children to do their injections together before they ate lunch, watching over each of them, and offering words of encouragement and words of reassurance. Worlds frequently collide in the diabetes advocacy space, and these incredible advocates are also #dedoc° voices. They are as confident and comfortable standing on stages at international professional diabetes conferences and in front of community groups. This is community at its best and most powerful.
One of the activities during the day is a ‘Wall of Hope’. I asked one of the event organisers translate the words on the post it notes. It came as no surprise to me that in the wishes and hopes and dreams of these young people, diabetes didn’t feature. They wrote about wanting to be doctors and teachers and work for the government. Many wrote about wanting to have happy lives. One said ‘I want to be strong like my mother and then I want to be a doctor’. I got a bit wobbly with that one!
There are some universal truths about T1D. I’ve come to learn that after decades of working in the diabetes space and spending time with others with diabetes. We are all different and we all carry diabetes in different ways. Our experiences vary based on diverse, complex and multiple factors. There absolutely is no one size fits all for diabetes.
But there is one constant that I have seen and continue to see ant that is the power of peer support. Spending time with others living with diabetes is life changing. The shared language of diabetes connects people in ways that make sense only to those of walking our own diabetes path.
One of the organisers of the event told me that me being there was important for the families and for the kids with diabetes. She looked surprised when I told her that it was important for me to see them. I learn from each and every other person with diabetes I come across and feel energised and connected. We all leave with out batteries recharged from the energy in the room.
Living with diabetes was never meant to be a solitary endeavour. It makes it so much easier when we have others who ‘get it’ because they’re living it too. That’s the superpower of community.
Disclosure
The Udaipur T1D Summit is a collaboration between Friends of Mewar (a charity run by Princess Padmaja Kumari Parmar who lives with T1D), the William J Clinton Foundation and Breakthrough T1D. I work at Breakthrough T1D as Senior Director, Global Responsibility.
During the World Health Assembly in Geneva in May, there was an interesting shift as the days of the meeting progressed. I am always on high alert about the language used at these meetings (remember the ‘adherence’ event last year?), and this year, there was a definite shift in the words used when referring to people with lived experience of the health conditions discussed in different sessions.
Lived expertise started popping up, used by session chairs and moderators. This didn’t just happen by chance. For some time now, bolshy advocates (hand raised and waving…bolshily) have been stressing that what people with lived expereince bring to the table is indeed expertise. No one else can do it, and it is an essential part of any discussion.
During one of the audience discussions, I made the point of highlighting the importance of framing what people with different conditions bring as expertise. I emphasised that there is no one else capable of bringing that perspective and knowledge. The following day the moderator from that session introduced speakers with diabetes as having lived expertise. One of my colleagues reached over to me and tapped me on the arm: ‘Look at that! She’s changed her language from yesterday’s session’.
This shift is reflected in the new Meaningful Community Engagement framework used at ALIGN-T1D, where there is the clear acknowledgement that lived experience is expertise. (Disclosure: I work in the Global Responsibility team at Breakthrough T1D, the secretariat of ALIGN-T1D). It’s not just a framework document – it’s genuinely embedded in the project’s work and governance structure, and similarly, more broadly throughout the whole organisation. Can I tell you the utter joy I feel when colleagues without diabetes are the ones spearheading this language change rather than it being the person with diabetes! I see them doing it not only deliberately, but because they mean it.
Lived expertise in the diabetes context
I think for some people with diabetes it might take time to come around to using the moniker ‘expert’. I wrote years ago about how some people feel the term ‘advocate’ is loaded, and how not everyone who engages in advocacy feels comfortable adopting the label. I imagine for those people, coming on board and referring to themselves as experts might be a stretch. I’m curious as to why, and I wish that the imposter syndrome or whatever it is that is holding them back disappears so they can recognise the skill and expertise they bring.
While everyone with diabetes has expertise in their diabetes, we also need to recognise that there are expertise and skills that are learned. If we genuinely want lived expertise to be valued in the same way as other forms of expertise, we need others to understand that too. Otherwise, we see tokenism flourish as ‘anyone with diabetes will do’
For example, my expertise as a diabetes advocate lies in the areas upon which I have lived experience and also laboured experience. (For more about the four Ls of experience, please see this incredible piece in Diabetologia last year, led by Linxi Mytkolli with contributions from other #dedoc° voices from around the world.) With that knowledge, I know that I absolutely have expertise in what it means to live every day with T1D: the relentlessness, decision-making, stigma, language, healthcare interactions and the countless ways diabetes intersects with the rest of life because I have lived that reality for decades and spent years examining and articulating those experiences through my advocacy and writing. I don’t have expertise in living with T2D, or T1D and experiences that differ significantly from my own. That’s why I say no far more than yes when asked to act as a community representative.
My work – my laboured experience – means that I bring expertise around diabetes language, stigma, peer support, community engagement, advocacy and strategic communication. I have sat on numerous advisory boards and steering committees and, over time, developed the skills and expertise to lead and chair these groups. After spending years of acting as organisation spokespeople, I have expertise in media engagement and messaging. If I was asked to lead the design a diabetes registry or epidemiological study, I’d say no – that’s not where my expertise lies.
The problem with recognising lived experience as lived expertise is that there remains the issue of tokenism. If people’s expertise and skill as advocates or advisers or community representatives are overlooked, and anyone with diabetes is considered suitable, then we diminish the expertise they bring. To be involved in decision-making and advisory processes means having the confidence to push back, to challenge assumptions, to ask difficult questions and to recognise and overcome the real and perceived power imbalances that often exist in these spaces.
I will always say that people with diabetes should be centred and involved in all aspects of diabetes, but perhaps the caveat to that there needs to be consideration to match the right person with the right expertise to the right role. And that shouldn’t be surprising. After all, we readily accept that executive leadership positions, policy roles and research leadership roles require specific expertise and experience. Lived expertise should be treated with the same respect.
Recognising lived expertise means changing the questions we ask about who is involved in projects, advisory groups and decision-making processes. Instead of asking, ‘Do we have someone with diabetes at the table?’, we should be asking, ‘Whose expertise do we need?’ and ‘What experiences, skills and perspectives are missing from this discussion?’. Those are very different questions, and they lead to very different outcomes.
It also means being prepared to invest in people. We would never expect researchers, healthcare professionals or policymakers to become experts without mentoring, support or opportunities to develop their skills. The same should apply to lived expertise. If we want meaningful engagement, we need to support people to build confidence, gain experience and develop the skills needed to contribute effectively.
I’ve started this post a dozen times over the last ten days as I’ve tried to put together a personal reflection on the life of my friend Bastian Hauck. If you’re in the #dedoc° or broader diabetes community, you will undoubtedly have seen some truly beautiful messages and tributes. What more can I say that hasn’t already been said?
What I really want to write about is my friendship with Bastian in all its glory, which to be honest wasn’t always glorious. He referred to me as his sparring partner because I was the one who challenged him and pushed him to think in different ways. I was the one who asked him to stop and take a beat before making a decision. I was the one who told him when I thought he was out of line. I was the one who asked him to listen and try to see others’ perspectives.
When we’d speak, regardless of who called, the first thing I’d hear from him was a question. ‘Renza?’ he’d say. I don’t know who else he was expecting, but the inflection in his voice rose. Making sure I could hear him. ‘I’m here,’ I’d say. And we’d talk.
Our ‘quick chat?’ messages that preceded calls were lies. It became a habit to send each other a message as soon as we eventually hung up with the minute count of our call. ‘58 minutes!’ I’d write. ‘Why can’t we have quick calls?’ ‘Let’s not change that,’ he once replied.
Bastian was one of my closest friends. Despite living on opposite sides of the world, I spoke to him more than any of my friends nearby. Thanks to crazy travel schedules, we’d see each other four or five times a year. But it was in between those in-person catch ups that we’d spend hours talking about #dedoc°. I can’t count the number of times we’d talk each other of ledges after some particularly annoying incident. He’d explode over an encounter with someone and want to start an all out war with them. ‘Don’t give it air, Bastian,’ I’d urge him. He’d rant and rage and tell me in detail what he intended to do to make the situation right and confront them. I’d ask if it were really worth the effort. Eventually, he’d calm down. Just in time for me to blow up at the nastiness of online interactions, and then it would be my turn to rant and rave. And he’d tell me not to worry about them and remind me of my advice to him: ‘Don’t give them air’.
One of the last messages I sent him asked ‘How have we managed to do this for so long and just get things done?’ What I didn’t add was: ‘How do I keep getting things done now?’
A year after he met, he came to Melbourne for the 2013 IDF Congress, and had dinner at our home with a group of global advocates. He spoke frequently about that dinner, mostly because the following day he was taken to the outer suburbs of Melbourne to see kangaroos. Monique Hanley, if you’re reading this, you were a hero to him for organising that trip!
That was one of the things about Bastian. He held on to those sorts of memories and shared them over and over. Kangaroos? Just jumping around the place? And he got to see them? Amazing! I can’t tell you the number of times I heard him say ‘And the next day after dinner at your house that wonderful woman Monique took us to see Kangaroos’. ‘I know, Bastian’, I’d say. ‘I was at the dinner. At my house. I introduced you.’
Our stories in the diabetes world have been so intertwined. This week people keep sending me photos of us on stage at different conferences, the #dedoc° logo behind us. ‘Bastian, make sure the #dedoc° branding is there. Bright. We want people to know it’s #dedoc°,’ I’d say. ‘We want people to hear the stories, Renza,’ he’d reply. ‘Yes…but also that #dedoc° made that possible’. My comms hat is never far from planted firmly on my head. It annoyed the crap out of him. I didn’t care.
And people have sent me videos and recordings of interviews and podcasts we did together. I snapped those shut before they started. Because how is it possible that Bastian’s voice – that voice I’d hear three or four times every week at the end of the phone – is now only there in old recordings?
I regret every time I told Bastian to talk less. ‘You don’t need to go over that again,’ I’d say as we were prepping for a #dedoc° symposium at one conference or another. ‘Get off the stage and let the speakers speak!’ But he just wanted to yell from the rooftops about the #dedoc° community and how far we’d come. And the allies who helped us there. And mostly the incredibly #dedoc° voices who were family. He couldn’t stop talking about it!
We’d do EASD TV each year and when we finished our interview he’d always ask me ‘How do you do that soundbite thing?’, referring to the succinct way I’d answer a question, with grabs that I knew would make it to the promo for the video. I’d laugh and tell him, ‘By saying as few words as possible, but making those words count. Fewer words, Bastian. Say less!’ Now I wish I’d let him ramble on and on.
The last time I saw Bastian was in Vienna last year at EASD. It was not an easy conference. We were managing a difficult situation at #dedoc°. He and I disagreed on how to deal with it, and I returned home feeling frustrated, angry and exhausted. ‘Renza, you need to step back from this one,’ he said. I knew he needed to feel in control of something – anything – at a time when so much of what was going on in his life was big and scary and way beyond his control.
And so I did. I stepped back. And there were a couple of months where when spoke and sent messages there was, undeniably, a discomfort in our words. It didn’t last long. He recognised the tension. He apologised, I did too. I think we both knew that we couldn’t waste time being wary around each other. There was too much to do. There was not going to be enough time. We were trying to steer #dedoc° to safe waters.
And there’s a sailing analogy, because there always are in conversations with Bastian. He wound in the fact that he was a sailor into every conversation he could. ‘When I was on the big boat last summer in Copenhagen…’ he would begin. And I’d try not to laugh because it wasn’t enough for him to mention he had a boat. He had to mention that he had a big boat, suggesting (rightly) the existence of a small boat. God forbid he said it out loud at a conference or in a room with our beautiful friend Amin. He and I would glance at each other, or send a message, desperately trying to not laugh. Amin…one of Bastian’s closest friends. My heart breaks for him too right now.
It was the weekend before last that I spoke with Bastian for the last time. ‘It will be a quick conversation.’ I was told by his friend who was organising the call. ‘I understand,’ I said, thinking that perhaps we would actually have a short call. Maybe now was the time we changed things.
But Bastian had things he needed to say to make sure I understood what he wanted for #dedoc°. ‘Bastian,’ I interrupted. ‘You’ve done enough’. ‘Shut up, Renza,’ he pushed back. Now’s not the time to tell him to watch himself, I thought, so I listened. I listened to his voice and his words and took notes, interjecting only to promise to follow up.
And then it was time. ‘I’m sorry I didn’t come to see you,’ I said. He said he was too. I know he really wanted us to say goodbye in person. I couldn’t make it work. And I think that, selfishly, I didn’t know that I could face everything.
Instead, just as we had done countless times before, we said goodbye to each other on a phone call. ‘Thank you for everything’. I said. Or did he say that? Perhaps we both did.
And then I sat there, looking at the timer on my phone. Forty minutes. Our quick call, on the day he died, went for 40 minutes. I smiled through my tears. I guess we didn’t change it after all.
There’s an urge we have when someone we know dies. We desperately try to hold onto our connection to them. In a world of social media, we want to show the world that connection – how we knew the person. How we met them. How we existed within their orbit.
Bastian’s orbit encompassed so many people. How lucky we all are to have known him.
But his passing isn’t about us. No matter how many photos we have with him.
Bastian’s favourite saying was #PayItForward. It was one of the core principles upon which he built #dedoc°. It is why #dedoc° has always been a platform upon which others stand and shine. Bastian never wanted #dedoc° to be about him, or for #dedoc° to be the story. It was always about elevating others with diabetes. Making sure the platform was sturdy enough to hold as many as possible. That was how he wanted to #PayItForward.
This is the story of where that saying came from, in Bastian’s own words from a very old tweet.
Perhaps the best way to honour Bastian is to remember these words and look to how we can support others, just as he did for so many. And take a back seat while doing so.
Go well, my dear friend. Thank you for showing up.
There are some words that are very hard to write.
This post is full of those words, as is the announcement you can read in full below. I wrote those words over the weekend with such sadness and the heaviest of hearts.
There are few people in the diabetes community who don’t know the name Bastian Hauck. I’ve known Bastian for almost fourteen years now. We met at a European Bloggers Summit, hosted by J&J who, at the time, was the distributors of the Animas Insulin Pump. I don’t know why I was invited, but I am forever grateful I was there, because I met some of the most important people in my diabetes world at that meeting in Berlin.
Bastian was one of those people. He spoke about his adventures sailing around the world in a (small) boat. Not remotely relatable to me, but nonetheless, we became friends and since then, we have worked together in the diabetes advocacy space. The weekly #dedoc° tweetchat premiered the same week as the weekly #OzDOC tweetchats. (Remember those days?)
When Bastian started thinking about a program to bring people with a diabetes to diabetes professional conferences, he spoke with me about it at length. Any time we found ourselves in the same place, he’d share his thoughts and from there we tried to shape what would become the #dedoc° voices scholarship program. That program was launched in 2020, and since then, hundreds of people with a diabetes have been the recipients of a scholarship. The program is so precious and important, and it all happened because Bastian had an idea and didn’t stop working until he made it happen.
Bastian and I haven’t always agreed on things. In fact, there have been many occasions where we have come from polar opposite sides of an argument. In my role as an advisor to #dedoc°, I provide my advice, and he then does what he wants. Sometimes his decision ends up being fine, other times, he has realised that his decision was, perhaps, not the right one. I am pleased to say that I have screenshots of messages from him and videos of him saying. ‘Renza was right’. Damn, straight she was! (I write this knowing he is reading this and laughing/grimacing.)
Bastian’s big picture thinking will be his legacy. I’ve just used a word that he doesn’t like and has forbidden the #dedoc° team from using. But on this space, he doesn’t get to tone police my words. His refusal to stop until community is centred and valued is the reason that organisations such as ATTD, EASD and ISPAD now have dedicated roles for people with lived experience of diabetes. It’s the reason that so much global advocacy has happened the way it has – because the #dedoc° scholarship program provided opportunities for people to come together and build their ideas. This is, indeed, a legacy, and one of which I hope he is incredibly proud.
For the last few years, Bastian has been living with terminal cancer. During this time, I’ve listened to him share his experiences, his frustrations, details of his treatments, the positive moments. And, heartbreakingly, the moments where the news he has been given is incredibly confronting. Now is one of those times.
And so, please read the below message. It is for the #dedoc° voices and the diabetes community more broadly. It has been shared across #dedoc° channels, and I would encourage everyone to leave a message, if you’d like.
Our community has been built on the actions of giants, and one of those giants is Bastian Hauck. How fortunate so many people are to have benefitted from the community he has built and the opportunities he created.
Sunday is Feminist Christmas*. It’s the day that social media feeds turn pink and women get celebrated with morning teas (organised by women) and the lady folk are handed a cupcake (made by women) to shut us up and make us forget that women continue to live in a world designed and defined by patriarchy.
Isn’t that a joyful start to this article? I’ll wait while people shift uncomfortably and refer to me as an angry/difficult woman.
In the coming days in the diabetes world, you’ll see posts pointing to women in the diabetes landscape. These women are generally remarkable and doing great things. But oddly, rarely are the women whose faces appear on a social media carousel actually living with diabetes. A few years ago, I pointed out that while we should be recognising the clinicians and researchers improving our lives, women with diabetes are completely ignored.
So, a little hint to anyone who is putting together content for next week: don’t forget to also highlight the women with lived experience of diabetes who are actually doing so much of the work in our community. Those grassroots initiatives that continue to be life saving and life changing are very often powered by women with diabetes. And, as is often the case, these women do this work on a volunteer basis. All while managing a very demanding chronic health condition on top of all the other work women do.
In the meantime, you should all register for this year’s DiaLeb Annual Diabetes and Women Panel. This is the 7th year and I’m very excited to be on the panel with two remarkable women living with diabetes, and another two women with loved experience of diabetes. Be quick! It’s tomorrow!
Seriously, women with diabetes are brilliant. we deserve way more than a cupcake. But I’ll take one all the same if some bloke would like to organise it.
More on International Women’s Day at Diabetogenic
2023 – Deserving more than a cupcake
2019 – Interweb Jumble #34 – The IWD edit
*The brilliant Wilhelmina Stracke coined this term. You should follow her on Instagram.
So what has been occupying your minds over the first few weeks of the year? Well, for a while there (and still), mine was trying to understand the veritable PR disaster of the Adelaide Writers Week (AWW). Niche? Yes. Relevant to diabetes? Also yes. In a roundabout way.
Let me set the scene. A writers festival in Australia was cancelled after one of the speakers had her invitation rescinded. The simple explanation of this is that the speaker, academic and author Dr Randa Abdel-Fattah had made some comments on social media that were deemed controversial by the AWW Board. More concerning, they connected these comments with the shootings in Bondi in December last year, effectively associating Dr Abdel-Fattah with the shooters. I’m actually not here to comment on Dr Abdel-Fattah, other than to say her treatment was appalling. There has been a lot of commentary, and if you’re not from Australia (or are from Australia but somehow managed to miss it) simply google AWW for details of what happens when decisions are made without consultation or understanding of the affected community.
I specifically want to focus on one part of the whole saga and that is the decision makers responsible for the PR nightmare. The Board of the Adelaide Festival (who is also responsible for the AWW) made the decision without the support of AWW director, Dr Louise Adler AM or her team. Dr Adler, in a letter published in the Guardian after she resigned from her role highlighted that the board was ‘composed of individuals with little experience in the arts ‘, which lead to decisions being made without cultural context and an absence of understanding consequence.
Even before I’d read Dr Alder’s compelling and commentary, the conversations I was having with friends and family were homed in on the same themes. We knew that the other writers at the festival would withdraw from the festival, one by one. We knew that Dr Adler had been treated terribly. And we were waiting for the gaslighting that would come from the Board, and anyone else involved in the decision making.
We knew, because we are a family of artists. My husband is a professional musician. My daughter is studying writing and journalism and has a part time job writing for a local newspaper. I studied music at university. Our friends are musicians, composers, writers, film makers, makers and journalists. We’d had discussions with many of them about how the Board’s lack of understanding of the arts sector, the way the community would respond, and how the community would be impacted. The words I used were ‘They have no skin in the game’, and by that I meant that not only couldn’t they see what was coming, they could also walk away relatively unscathed. Their careers were unlikely limited by their involvement in the decision and even though the entire board resigned, I would bet that it hasn’t made a dent professional standing or income.
Yet it wasn’t the arts scene that was the focus of my thoughts when I considered the AWW board, the decisions they made, the lack of insight into community response or the inevitable and highly predictable fallout.
It was, of course, diabetes.
I found myself wandering around the house and on daily walks muttering ‘Nothing about us without us’ with a growing frustration that this lesson keeps having to be learnt the hard way.
It may be different communities and different contexts, but we’ve seen similar incidents play out just like this in the diabetes world for years. People with diabetes are not included in decision making processes. But then sit there, watching the fall out.
The process is the same. The positioning from the people making decisions is the same. Think about some pretty ridiculous diabetes decisions in recent years and think about who made them, and who wasn’t consulted. Think about the fallout from a particularly nasty diabetes campaign that adds to diabetes-related stigma. It’s with disbelief that I think back to campaign discussions when I was told outright that offending and upsetting people with diabetes when a campaign launched was the price to pay because we weren’t the intended audience, as if we would be magically shielded from the stigmatising messaging. And that it was an unintended consequence in efforts to inform the general public.
Those gaslighting me weren’t going to be in the firing line next time someone made some horrid comment about diabetes. It wasn’t their weekend that was going to be ruined when some smartarse in a supermarket queue or café said something about sugar causing diabetes or personal responsibility or how diabetes is a ticking time bomb.
When a decision is made that directly impacts people’s lives, surely those people should be in the room, at the table and have their voices heard the loudest. Surely. It’s so frequently not the case when diabetes decisions are made. It wasn’t the case when the AWW Board decided to cancel Dr Abdel-Fattah’s speaking engagement.
And so, the AWW was cancelled after almost all the writers on the program withdrew and the Board resigned. Interestingly, most of the Board members sit on other boards, so their status as ‘leaders’ and ‘decision makers’ doesn’t seem to be too impacted. Meanwhile, those writers have lost one of the few (and seemingly shrinking) opportunities to meet to share ideas and celebrate their community. Their incomes have been impacted. The chance to get their work in front of an audience has disappeared.
Nothing about us without us. It seems that this little catch phrase has been ignored too often, unless being used in convenient and cute attempts to demonstrate (usually lacking) community engagement. Instead, maybe it’s time to put us on boards and in leadership and decision-making positions. Maybe it’s time to actually listen to the people who know. Because our skin? It’s the one in the game more than anyone else’s. Raw, exposed and in the firing line.
It’s been a hot minute, hasn’t it. And by ‘hot’ I mean sweltering here in Melbourne. While my friends in the northern hemisphere are sharing snow photos, we’ve been dealing with days in the high 30s and 40s. (For my US friends – we hit almost 120°F this month. It was not nice.)
Anyway, now that the weather discussions are over, let me wish you all a belated happy new year. I’d like to say that I hope that your start to 2026 has been gentle and kind, but instead, picture me gesturing wildly at the world and shaking my head in despair.
I finished up 2025 feeling pretty damn exhausted and burnt out. But, really, who wasn’t feeling that way? There was a lot of good stuff that I could look back on, but the never-ending travel wore me out. I feel compelled to say that I know I am fortunate to do the work I do, and I love my job. Being able to work with people in the diabetes community who are making real change is a gift every single day. I would just be so happy if someone could find out a way for Australia to not be a 30-hour trip away from most of the places I need to visit.
I was lucky to have a three-week break over the Christmas/New Year period where I travelled no further than 5kms from my house, and I’ll have had a 10-week hiatus before I next find myself in an airport. Both of these breaks feel like a luxury!
But as we gear up for 2026, it’s undeniable that the global health world is in a mess and diabetes is not immune to that. I’m really pleased that some of my work will involve addressing issues that are important to people with diabetes. I’m beyond honoured to have been invited to give the Anita Carlson lecture at this month’s Psychosocial Aspects of Diabetes (PSAD) Conference (even happier that it’s being held in a regional city in my state and I only have to drive for an hour to get there!). I’ve called my lecture ‘Building Diabetes Healthcare from the Ground Up’ and it’s given me an opportunity to imagine just what diabetes healthcare could be if people with diabetes were actually centred and involved in its creation.
Next month the first Global Summit to End Diabetes Stigma is being held in Jaipur, India. Can you imagine hundreds of people with or working in diabetes coming together in one place to come up with meaningful and real strategies to end stigma? For disclosure purposes, this event is being funded via a grant from Breakthrough T1D (I work there), and I am involved in the planning of the event. It feels like a culmination of a lot of efforts highlighting the impact of stigma to get to a place where the diabetes world is ready to collaborate to end it. I’m so thrilled to be working for the organisation that has recognised that.
For me right now though, there is an overarching feeling that the world really is burning. While the US gets a lot of our attention, diabetes healthcare and access to insulin and care remains incredibly lacking in other parts of the world. As always, the most vulnerable in our world are impacted the most negatively. I don’t know about you, but a lot of the time I feel helpless.
Now it’s February, you may have once again seen that the annual Spare a Rose campaign has started. I think this is the fourteenth year of the campaign. I think back to what the diabetes community was like when Spare a Rose first started, and honestly, it feels very different to what we have today. I don’t know if a campaign like this would be started in today’s community. In fact, sometimes I find it harder and harder to find community and advocacy these days, as “influencer culture” takes hold.
And so, it’s worth remembering where Spare a Rose came from and the intentions behind it. It was a group of advocates in the US who wanted to give back somehow. I should point out that the advocates who started Spare a Rose had already given so much to the community. Many of them have taken a back seat to front-facing advocacy efforts but their legacies live on, even if fewer and fewer people see how they shaped the DOC. It’s diabetes advocates who have driven this campaign over the years and made sure that it has remained in the view of people with diabetes.
I have always loved the simplicity of Spare a Rose. The donation being asked for is small – US$5. For those needing a refresher, the idea is to give your loved one eleven rather than twelve roses and donate the saving to the campaign. In our house, we forgo flowers completely and recognise that empty vases are a small price to pay for making a donation to the value of a year’s worth of insulin.
I know that many are doing it tough these days. I also know that a lot of people who would have donated without a second thought in the past are unable to do so now due to changes of circumstances in so-called high-income countries.
But if you can support Spare a Rose by making a donation, please do. All funds go directly to the brilliant charity Insulin for Life, and each contribution makes a difference to a person with diabetes in a low-income country. If you can’t make a financial contribution, please share the website across your networks. Someone else in there might be able to donate. Every single dollar counts.
Click to donate!
My dad has always taken his parenting duties very seriously, and as such, he made sure that by the time I was ten years old, I had watched and rewatched all Marx Brothers movies to the point that I was able to recite the scripts word for word. I can’t tell you how many times I’ve watched ‘A Night at the Opera’, but it’s probably that movie and not twenty years of classical music training that means I can sing along to most of Il Trovatore.
My mum has never been a fan of the Marx Brothers. She’d roll her eyes while we were rolling around on the floor in fits of laughter, shaking her head and muttering that she simply didn’t understand what we found so amusing.
Does this mean she doesn’t have a sense of humour? Of course not, contrary to dad’s constant suggestion of as much. Mum regularly shares killer memes and jokes that are laugh out loud hilarious. It’s just that the Marx Brothers have never made her laugh (weirdo).
This showed me that people laugh at different things. One person’s funny bone tickler is another’s shrug of utter indifference.
One thing I learnt pretty early on when I started hanging out in the global online diabetes community is that humour is a really important coping mechanism for living with the condition. It makes sense, right? I mean, there are some pretty grim aspects of life with T1D, and having a laugh can lighten especially dark days, and help us keep perspective when things feel overwhelming.
Back in the OG DOC days, there were awards given to writers and people on social media, and one of the award categories was humour. I’ve tried to inject some humour into this blog over the years – you can be the judge how successful I’ve been. Read to the end and you’ll see I’ve linked to some posts where I tried to use jokes and humour to keep things a little lighter.
Sometimes, however, attempts at humour don’t land all that well. Or they land at the expense of others. And when that’s the case, I think we need to stop for a minute and check ourselves. Is it worth getting a laugh when you are punching down?
I don’t think so – especially because the result of punching down is often stigma. And we all know how I feel about that. Right? RIGHT?
None of this is new from me. I’ve been talking about how when people stigmatise any type of diabetes, we all suffer. I’ve been pretty blunt when calling out the T1D community for being outright nasty about people with other types of diabetes, especially people with T2D. The stigma we experience is a direct result of misinformation and ignorance about all types of diabetes. Contributing to it is not only nasty, but it is also voting against our own interests.
This post today has come about because over the last 24-hours a T1D Facebook group that I’m a member of has been embroiled in a fiery debate because one of the group’s moderators posted a meme that stigmatises type 2 diabetes. I’m not sharing the meme here, (because why would I add to diabetes stigma?) but I can describe it by saying that it highlighted a risk factor of T2D in a very stigmatising way. It was unoriginal, unamusing and unkind.
And it got messy. A number of people asked for the meme to be removed. Many were upset and found it offensive.
The moderators of the group doubled down. There were demands to scroll by and reminders that we were not there to ‘defend’ other types of diabetes. Comments pleading for the post to be removed were deleted and people were told they ‘Can’t take a joke’. I asked a few times for someone to please explain the ‘joke’, because I didn’t understand it. No one was able to do that. My comments were deleted anyway.
It astonishes me that the moderators of this group have chosen the hill they want to die on to be that it’s okay to stigmatise T2D and people should get over it if they don’t like it. They must have spent hours deleting comments and telling people to ‘get over themselves’. They repeatedly pointed out that the group is a T1D meme group with what seems an assumption that all people with T1D are happy for there to be nasty memes about T2D. Reassuringly, that’s not the case. A lot of people with T1D in the group are not impressed about the stigmatising posts and pop their heads above the parapet to let that be known.
A T1D meme page could be a source of joy, amusement, unity and some pretty clever humour, but instead, this group seems to regularly descend into bickering about what’s a joke and what’s just plain cruel, because many people with T1D don’t want to see T2D stigmatised or for misconceptions to be perpetuated. I’m one of those people.
And yes, I know that I can just leave the group. But one of the other things my dad, (and mum) taught me is that the standard you walk by is the standard you accept, and posting crappy, stigmatising, false and outright mean things about people with any type of diabetes is not a standard I accept. I call it out – regardless of who it is posting it.
I also want people to understand that these sorts of posts contribute to not just stigma about T2D, but to stigma about T1D as well. It constantly befuddles me that people who defend the right to be nasty and stigmatising about T2D are the same people who are up in arms when someone says something incorrect or stigmatising about T1D. The intellectual disconnect that can’t join the dots between the two issues is really something!
We can do better as a community. There are brilliant stories, jokes, and moments of wit that are truly hilarious, and we should be able to laugh about the shared absurdities and frustrations of life with T1D. But we can do it without throwing another group of people under the bus.
Want to see some truly funny things?
Watch Melissa Lee’s D-Parodies. Truly brilliant and hilarious.
Spoonful of Laughter from the team at dStigmatise brings comedians together to show how we can laugh about diabetes, and check stigma at the door.
Sam Morrison is one of the featured comedians on A Spoonful of Laughter and you can follow him, here.
Follow Brad Slaight! He’s hilarious.
Miss Diabetes manages to address some pretty serious issues around diabetes using her fabulous comics and artwork.
His Instagram handle is @type1comedian, and he’s damn funny! I’m not sure if any of Chelcie Rice’s stand up is online, but search for it and see if you get lucky.
And some questionable attempts of humour from me
Pancreas performance review (it’s really all about Effin’ Birds!)
My Lie on a Plate (rubbish influencers influencing rubbish)
Are you a diabetes expert? (This quiz has the answer!)
Diabetogenic 