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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.
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.
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!)
Just what is the emotional labour associated with living with a life-long health condition like diabetes? I’ve been thinking about it a lot this week, firstly because I was asked to give a talk about it to a group of researchers to help them understand barriers they may experience with getting participants into their research. It was a great discussion, with plenty of questions and hopefully a new understanding of the burden diabetes unleashes on us. And then, I thought about it when I was feeling the weight of that burden – more so than usual.
The emotional labour of living with diabetes is a complex, often invisible force, shaping our lived experience in profound ways. It’s the mental and emotional effort we put into the never-ending demands of the condition. It’s accompanied by an inner dialogue that asks if we’re doing enough, trying enough, feeling enough, being enough. It comes on top of the physical labour of doing diabetes, which in itself, is significant. It’s an ever-accruing emotional toll of being perpetually alert, constant decision making and wondering how those decisions might impact our immediate and long-term health and wellbeing. The emotional resilience required to do diabetes each day is an additional burden of itself, the sum of all these parts equalling an unforgiving weight that, at times, just feels too damn heavy to carry anymore.
But it doesn’t end there. Living with diabetes is an act of advocacy in itself, even if that advocacy is for ourselves alone and whether we use the word or not. Some people who take on advocacy issues and causes, leading efforts, participating in them, speaking about them. Whether involved in advocacy as a paid day job, consulting-type role, voluntarily, or a hybrid version (me), all of it adds to the emotional labour of diabetes.
Of course advocacy can be energising – striving for better healthcare, pushing for more understanding, and campaigning for supportive policies are endeavours close to our hearts and seeing efforts result in stunning outcomes bolster our energy levels. Working together with others with diabetes to change our communities is motivating. But it can also be exhausting. Each act of advocacy draws from our already limited reserves. The constant need to explain, to justify, to fight for our rights and needs can lead to burnout, leaving us feeling drained and disheartened in a fight that seems unending.
That’s where I spent a lot of this week: drained, disheartened, devastated and frequently teary with the weight of advocacy casting a long, dark shadow.
I know that this is something people with diabetes speak about, and the mental health of diabetes is finally on agendas, but it still needs to be said that being adjacent to diabetes, or being a champion for mental healthcare doesn’t offer a true understanding of just what it feels like. The best allies I know are the ones who recognise this gap in understanding and do all they can to ensure they don’t add to it and try to learn by stepping back and not overshadowing our voices or efforts.
One of the ways people with diabetes have attempted to deal with this labour and resulting burnout is to build peer communities and networks. Solace from the weight of diabetes can be found in others with shared experiences in sanctuaries where our struggles don’t need to be explained but they are deeply understood. These are safe spaces where we exchange stories, share tips, and buoy each other’s spirits. These communities become a wellspring of support and encouragement, where our emotional labour is shared, and our advocacy efforts are collectively bolstered. Safeguarding those spaces is essential if we’re to draw strength from them rather than find ourselves being overwhelmed by them.
In recent years, I’ve found myself becoming more and more selective about where I find that support. Twitter was probably the first to be left behind as I no longer found it a safe space. I’m reminded of that any time I venture back an innocent tweet about my own diabetes choices is attacked from some low carb bro. I replaced the openness of social platforms with closed group chats of others with diabetes, knowing that the support was there without the risk of trolling. Those chats provide the light to guide my way through the shadows.
This week, with the heaviness of all that is diabetes weighing me down, it has been difficult to find that light. The networks I have are always there, but even that is sometimes not enough when everything is overwhelming. Hosting this week’s #docday°, and hearing from advocates from around the world doing incredible things wasn’t enough to help me see clear. I thought of how to push through this, and I don’t have an answer. Except this: One of the things we do so well in our community is lift each other up because our community and other people with diabetes are everything. And so, even while I am feeling weighted down, I can focus on that. And hope that in amplifying and cheerleading my peers with diabetes and their efforts, I’ll rise too.
Two community things you should know about…
Spare A Rose, Save a Life is continuing to accept donations here. Thanks to amazing advocate Tinotenda for driving this year’s campaign.
Sign and share this petition and read the consensus statement initiated by a group of #dedoc° voices which is calling for uninterrupted insulin access in humanitarian crises. Congrats to Lucia for coordinating this work.
On November 14, the world will literally light up in blue to celebrate World Diabetes Day. And here in Melbourne, an event highlighting one of the most important issues in diabetes today will be held. The entire event will be dedicated to how the global diabetes community is coming together to work to #EndDiabetesStigma. And you can be there!
I’m delighted to be sharing the hosting seat with Dr Norman Swan, physician, journalist and host of Radio National’s Health Report. A veritable A-Team of people from the international diabetes community will be part of the event, sharing their experiences of diabetes stigma and why efforts to end it are so necessary and timely. There will be representatives from the global lived experience community, diabetes organisations and health professionals and researchers. You really don’t want to miss it!
For those able to attend in person, you’ll have a chance to catch up with diabetes mates. Any chance for opportunistic peer support is a great thing and I’m so pleased that I’ll be seeing diabetes friends that I’ve not seen for a very long time.
This isn’t only for Melbourne locals. There will be a livestream for people around the world to watch, share and be part of on social media. It’s free to attend and will be a great opportunity to see the diabetes world come together on a day dedicated to us!
Diabetes stigma is a hot button topic in the diabetes world. It has been for some time. I wrote just last month how stigma was one of the most talked about issues at ADA. That week, we also launched an Open Letter from the Diabetes Community, asking health professionals to join us in our call to stop diabetes stigma.
And behind the scenes, for all of this year, another exciting, BIG, project has been hatching and I’m so excited to share it today.
Earlier this year, in an unprecedented show of unity and determination, a group of 51 experts from 18 countries joined forces to pool our lived, research and clinical experience to address diabetes stigma and discrimination. Together, we’ve reviewed the scientific evidence and established an international consensus on 49 Statements of Evidence and Recommendations. The full report on this review has been submitted and is currently under review.
Excitingly, the group also reached a consensus on a Pledge dedicated to bringing an end to diabetes stigma and discrimination. And that’s where you come in! Everyone can sign to show your commitment stop the ingrained negative judgments, stereotypes, and prejudices that influence attitudes about diabetes, and contribute to the stigma so many of us face. This isn’t just for the community. We know there is sometimes an echo chamber as we say the same things to each other, over and over. We also know that while diabetes stigma is indeed prevalent within our community, we also need to tell the story of its harm outside the diabetes world.
Well, here’s an easy way to do both. Please sign the pledge and share details across your social platforms. You can sign as an individual, and we’d also love for you to see if your place of work, school, community group, hospital, church, sporting team, favourite cafe…basically anywhere that is likely to come into contact with people with diabetes (i.e. literally everyone!) would be interested in signing too.
This is a true community effort, with involvement from stakeholders from across the diabetes landscape, across the world. You won’t see logos anywhere, because this for and about all people with diabetes. The names of the people involved in the work so far is on the website.
Are you with us?
A few weeks ago, I saw a post on LinkedIn from Nick Dawson. Nick was around Twitter health communities a lot when I first joined and it was great to read his post and take a wander down Twitter’s memory lane.
The feeling of nostalgia was strong. I don’t remember joining Twitter, but I do remember when I started actually using it to connect with others with diabetes from around the globe and how my diabetes world suddenly seemed infinitely bigger. No longer was I constrained to only people in my own networks, or even my own country. I was a global citizen in the diabetes online world. And it felt great.
Twitter became the cornerstone of a lot of my own advocacy and connections online. I never missed a weekly #DSMA tweet chat, expertly moderated by Cherise Shockley. The rapid fire hour of diabetes power often included hundreds of people. Dana Lewis’ #HCSM weekly chats brought together from different health communities, opening my eyes not only to different healthcare struggles, but also to solutions that helped me with my own diabetes. I used Twitter to find people who were doing incredible things that elevated the voice of people with diabetes. It was on Twitter that I followed along with the first Roche blogger summit that brought together US social media pioneers. I used those sorts of events to shape the Australian Social Media Summit that was held at the end of 2012, coordinated by Diabetes Victoria, bringing together Australian diabetes social media folk and Kerri Sparling from the US.
I was part of the team that started the weekly #OzDOC tweet chats in July 2012, working with Cherise to help get things started close to home. Around the same time, the first #GBGoc tweet chat happened and the first #dedoc° chat, #FRDoc and #ItDOC followed soon after. Back then, those chats were brilliant at highlighting local issues, but by and large, they were indeed global.
Twitter was the tool I used to take notes at conferences, live tweeting sessions to share with those not in the room, and then pulling the information together in briefing documents at works, and writing articles here and on other platforms. And Twitter was the channel where remarkable whole community events happened. Remember Kelly Kunik’s #IWishPeopleKnewThatDiabetes and those #DayOfDiabetes discussions? Or the groundbreaking and overwhelming community event that was #Simonpalooza? It was peer support on demand. There was no need to feel alone with your diabetes if you were on Twitter!
And then, I don’t know when, Twitter changed. Or I changed. Or the community changed. It became harder to find the people who had shone so brightly and made Twitter a place of support and community. I stuck close to old friends who never advertised the Twitter following count, because who cared? I learnt the difference between an advocate and an influencer. And I started to steer completely clear of parts of the community which was so alien to what it had been like when I first joined. #DSMA chats became less frequent because Twitter chats became kind of old hat. #OzDOC chats completely stopped because there hadn’t been a sustainability plan in place and there really wasn’t anyone to take over. Perhaps this was a reflection of how the community wanted to engage and what they…what we…wanted.
For me, most of the day-to-day reaching out I used Twitter for moved to being via private channels. And that worked fine and became the same lifeline that the public space Twitter had once been.
There have absolutely been some bangers recently that have made me remember how great Twitter can be. The weekly #DiabetesChat, using Spaces, launched a new community that, although based in the UK, was very much global. Tom and the organisers went out of their way to include people from other places around the world to be interviewed and lead discussions. I loved it straight away for the beautiful open and welcome feeling that was there and embraced it. #dedoc° isn’t really a Twitter based organisation, but the #dedoc° voices use it brilliantly, and diabetes conference are so visible because of their prolific sharing.
In the last few days, a new Twitter-like app called Threads has been launched and I tentatively signed up and had a nosy look around. It felt like Twitter in 2012. Friendly. Fun. Open. I’ve found Threads friends (thriends?) who I’ve not seen around the Twitter traps for years and have re-engaged. I’ve managed to steer clear from the parts of diabetes Twitter that I’ve actively avoided over recent years.
It’s not perfect. There needs to be an option for people to add ALT text to photos, because that’s not there yet. Apparently it is coming. (But, you know, accessibility should have been a first level consideration, not an after thought…) A desktop version would be useful – it’s annoying only having the option to type on a phone keypad. The lack of hashtags is annoying. (Just today, I went back and read the tweets from that first Australian social media summit by searching the hashtag. What a treasure trove!) Again, this is said to be on the cards. As is the capability to see only threads from people you’re following rather than the mishmash right now. Having said that, sprinkled in amongst the predominantly diabetes focused threads I’ve been seeing, I’m not too disappointed with the cat pics, recipes and book recommendations that I’m seeing a lot of. Also pleasing is that I’ve managed to avoid so much as a hint of the crappy, manipulative, misogynist side of the diabetes world that clouded my Twitter experience for a while before I worked out how to block it out completely.
Is this the future of Twitter? Over here on this new app? Threads feels like the nostalgia Nick wrote about. It really does feel like the ghost of Twitter past and I like it a whole lot more than the ghouls of Twitter present. Come and visit if you’re not there already. I’m @RenzaS and you’ll see me sharing diabetes stuff, pet photos, books. And asking people about their diabetes experiences to help me make sense of my own. I hope to see you there!
On day 2 of the American Diabetes Association Scientific Sessions, rushing between meetings, I overhead another attendee say this: ‘I’ve never heard so many people talking about diabetes stigma’. I turned to them, a bright smile on my face and said, ‘I know, right?’, (a phrase I only ever utter when I’m in the US).
Just a few hours earlier, Jazz Sethi and I had tweeted simultaneously, setting free an open letter from the diabetes community about diabetes-related stigma. You may have seen it; thousands of people have. And others have shared, commented and even translated it into different languages (I think we’re at 6 translations and counting). Here it is!
When we first asked advocates from the community if they would like to add their logo to the letter we were surprised by the quick response. Almost everyone we went to said yes. We hadn’t gone out too widely – we wanted to test the waters first. The first version of the open letter includes advocates and peer support groups from across the world. Amazing!
And after our very low-key, (i.e. a couple of tweets from unverified Twitter accounts, so who knows what the algorithm did with them!), we were once again inundated by people asking for us to add their logos. (We haven’t managed to add them yet, but absolutely will in coming weeks. Please give us time if you’ve shared your logo. We’ll get there. And I’ll update this post with the new final page when that happens.)
There is something magic about these sorts of very grassroots, very community, very inclusive initiatives. Not only are they great because they collaboratively offer a narrative from people with diabetes, highlighting an issue that is of great importance to many. They also show you just how powerful and united our community is while also pointing to individuals and groups who are keen to work together, support each other and power the importance of lived experience. And that’s pretty special!
Hey, do you remember a couple of weeks ago when it was International Women’s Day and women got a cupcake (probably baked by a woman) and a breakfast (probably organised by a woman) and then we all agreed that gender equality didn’t need to be spoken about for another year?
Look, I know I sound cynical. But that’s only because I am. Every year at Diabetogenic, I write a post celebrating the incredible women working in diabetes. Mostly I centre diabetes advocates who are generally donating their time – and emotional labour – to power advocacy efforts and make change. And if you look back at the history of the DOC, you will see that the majority of the work has been by women in the community. (Don’t @ me with your ‘But I’m a bloke and I’ve done this’ commentary. It’s not the time for #NotAllMen.)
This year, I started to write something, and then stopped, and started again. And then stopped. Anyone who is a frequent visitor to this site or follows any aspects of my personal advocacy knows that I celebrate the incredible work done by grassroots and community advocates (many/most of whom are women) throughout the year and I didn’t want to buy into the ‘It’s-IWD-here-are-the-womens-now-it’s-back-to-the-misogyny-we-usually-deal-with’ crap that seems to be the aftermath of each and every IWD.
So, I’m using today – this random day – to give a shout out to some of the great things going on that you may have seen, or you may have missed. These things are powered by women who, in most cases, are doing this as extra work on the side of their day jobs, and everything going on in their personal lives. But it’s undeniable that it’s this sort of stuff that is going on all the time, usually flying under the radar, but it’s making a difference to so many folks in the diabetes world.
And so…
There is some remarkable work out of India where the Blue Circle Foundation continues to make a mark in diabetes advocacy. On IWD, a team of women from the Foundation conducted an awareness program for 200 women inmates in Yerwada Jail in Pune, India. This is part of their ongoing Project Gaia which creates safe spaces for women with diabetes. Snehal Nandagawli is just one of the women involved in this work. You can hear more from her at this week’s #dedoc° #docday°.
From the UK, Mel Stephenson-Gray has been a brilliant force in the diabetes community for a number of years. She recently launched a fabulous new Insta page celebrating and empowering women with diabetes. It’s called Diabetes Women’s Health Club and the information she’s been sharing (accompanied by gorgeous graphics) is brilliant. I loved the profiles of some of women who were groundbreaking pioneers in diabetes research. Go give the page a follow now!
Dawn Adams hasn’t managed to convince me that she is only one person because the sheer volume of the work she is doing is immense and she’s bloody everywhere. Dawn continues to blaze trails in her research and writings about diabetes and menopause (follow @MenopauseMither on Twitter for great information and support), has been featured in a number of Diabetes UK publications, spoke at the recent #dedoc° symposium at ATTD, and continues to be a daily support and mentor to people across the global diabetes community. I’ve barely scratched the surface with this list. Someone please send Dawn a coffee and cinnamon bun so she can sit down for 30 seconds and recharge her batteries!
Another woman who is a human powerhouse and obviously works 23 hours a day (lazily, she sleeps for an hour) is Jazz Sethi whose work with the Diabesties Foundation continues to multiply exponentially. She’s also a brilliant speaker and gave an emotional talk at ATTD last month. Check out just some of what she is doing here (and stay tuned for something super exciting that we’ve been working on together!)
Also at the recent ATTD #dedoc° symposium, Hamidah Nabakka from the Sonia Nabeta Foundation captivated the packed-to-capacity room, sharing stories of children and young people living with diabetes in Africa. This was held on the first day of ATTD and for the rest of the week, I had people coming up to me and saying that it was their highlight of the whole conference.
I’m getting to this a little late because it was started last year, but Niki Breslin started a brilliant Insta page to build community called ‘My Type of Family’ for anyone with diabetes who is planning and trying to conceive, pregnant, recently had a baby and parenting. There’s lots of great information and encouragement for the community with this page and definitely worth a follow!
I was so excited to see some artwork by Miss Diabetes from New Zealand make it across the ditch Melbourne in an IWD street art exhibition. Her comic ‘Women and Diabetes’ was on show in our city’s iconic Hosier Lane! Miss Diabetes’ diabetes advocacy is super well-known in the community thanks to her tireless efforts supporting Insulin4All efforts and with work she’s done with the WHO diabetes team. You can see the artwork here.
Anita Sabidi in Indonesia continues to drive and build community with her advocacy work that shine very bright lights on issues such as emotional wellbeing and mental health, and women’s health. Anita is a regular speaker about these important topics, and also leads a number of community initiatives supporting women with diabetes in Indonesia. She’s also speaking at #docday° this week.
Dana Lewis never ceases to amaze. Last week she ran 100kms in a day, but unbelievably, it’s not her physical feats that make her name so well known in the diabetes world. It is, of course, her work in open source AID. Last month she gave two presentations at the Open Diabetes Closing Conference, and she has an upcoming session at the ADA Scientific Sessions in San Diego. On top of that, she continues to publish regularly and is a force for nothing but good!
Ashley Ng from Australia has been documenting life with two gorgeous little girls on her blog, opening up about some of the more difficult aspects of parenting while living with diabetes. I love Ash’s candidness and honesty and am always grateful for her ability to be so raw, but also hopeful. Read and subscribe to her blog here.
These women are just a few of the many who continue to make our community tick and flourish. There work is not only meaningful on 8 March: it’s making a difference every, single day. The very idea that women and their achievements get just one day of real celebration (albeit while battling the calls of ‘where’s International Men’s Day?’) is in equal parts frustrating and insulting. I celebrate the incredible work that women spearhead all the time because I know that alongside that work, they are dealing with patriarchal attitudes that make their successes all the more remarkable. That deserves far more than a cupcake!
Postscript
The UN theme for the day was DigitALL: Innovation and technology for gender equality, not the saccharine sweet ‘EmbraceEquity which means absolutely nothing and was created by some corporate machine that does nothing to advance equality in any way. So, if you spent IWD posting selfies of you hugging yourself, that’s great, but what did that really mean when it comes to advancing gender equality?
If you haven’t had a look at the website from the UN, it’s definitely worth it, even if it’s just to see the high-level details, one of which explains that online gender-based violence silences women and discourages their public participation. It may be odd to think this is a thing in the diabetes community when so much of what you see comes from women, but actually, it’s real. Harassment is a concern for many women, and I know of many women who have stopped sharing or locked down their accounts (permanently or temporarily), or deleted them completely, due to this harassment. I’m one of those women. This is something to be mindful of every day – not just a single day in March.
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