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Last year, facing the first Christmas in the times of COVID meant that for many people, celebrations were very different to other years. Our huge Italian family gatherings were put on hold because the idea of sharing food around a table, sitting in close proximity, and basically bringing together thirty or so loud Aussie-Italians, all shouting, because we all believe we need to be heard over everyone else, was considered not especially COVID-safe. Instead, we met in parks for catch ups, physically distanced and masked up. 

We also waived gift giving for the year. Instead, I made donations in the names of all my cousins’ kids, and for the Secret Santa gifts we (thankfully) didn’t have to buy. (I remain especially Grinch-like about this particular Christmas activity and you can read all about why here.)

Charities are continuing to do it tough. Not only are fewer people able to donate, but more and more people are relying on their services to get through. 

Insulin for Life is once again running its Secret Santa campaign and what a great way to share some love this festive season! All donations make a difference, but to give you an idea, if you can spare $5, you’ll be providing a week worth of diabetes supplies – insulin, syringes, and glucose strips – to someone with diabetes in an under-resourced country. 

There’s lots of information available on the Insulin for Life website, but this one statement certainly brings home just how dire the situation is for so many of our diabetes brothers and sisters around the globe: For every two people alive with type 1 diabetes, one person has died prematurely due to lack of basic care.

Let me just share that again: For every two people alive with type 1 diabetes, one person has died prematurely due to lack of basic care.

Even though I have been volunteering for years now for different diabetes-related charities that support people with diabetes in under-resourced countries, I haven’t become immune to feeling shock when I see the stark truth written out in such simple terms. 

Every single person can make a difference and improve the situation for people with diabetes in these situations. Donating is not possible for everyone, but there are other ways to help. If you are on social media, you can amplify the cause and share this blog post, or the donation link with a few words explaining how impactful donations can be (use the hashtag #IFLSecretSanta). You can organise a fundraiser at work, school or with friends – doing the legwork to make things like that happen are important and make a huge difference too. You could do a Facebook or Instagram fundraiser. You can pass a hat around at Christmas drinks and ask people to throw in any loose change they have. No amount is too small. Every contribution matters.

I was just chatting with some of the amazing people from the Insulin for Life team, and I was thrilled to hear donations are already coming in from the community. Of course, I’m not surprised. The diabetes community has always been amazing at giving back, as evidenced by the amazing efforts seen over the years with Spare a Rose. 

Insulin for Life’s Secret Santa campaign is just getting started. Last year was the first year, and the community stepped up. And in 2021, even after the absolutely horrendous year so many have had, there are people in the DOC showing up to support the campaign once again. That’s what this is all about. It’s what it’s always about. 

Please click on the image and donate if you can.

Gosh, there’s lots in the #DOC-iverse (#DOC-osphere?) about seeing diabetes, isn’t there? Yes, yes there is. Not sure about you, but I seem to be seeing a lot of bright, shiny, happy people (and a pop star or model or two) talking about diabetes, when usually they are pretty quiet about the whole diabetes thing. Which is fine. No one needs to spend their time advocating all about diabetes every minute of the day. 

But I wonder if any of the marketing boffins who threw together their messages of inspiration bothered to check to see what the International Diabetes Federation are up to for World Diabetes Day on 14 November. Afterall, that’s the showstopper event of the month, isn’t it? Celebrating the birthday of the bloke who I give thanks to every day for keeping me alive.

A bit of history about World Diabetes Day to help understand that it’s not just about privileged folks with diabetes showing off their high-tech gadgets strapped to their impossibly beautiful bodies. (And yes, I know I sound like the Grinch who stole World Diabetes Day, but I think that understanding the foundation of this day is kind of important because that all seems to get swallowed up in PR spin.)

World Diabetes Day means something. In 2006, it became an official United Nations Day thanks to United Nations Resolution 61/225. At the time it was one of only two official UN health days. But even before that, World Diabetes Day had been going on for some time. It was in 1991 that the IDF, together with the World Health Organisation, created World Diabetes Day in response to growing concerns about diabetes. 

Over the last thirty years, World Diabetes Day themes have aimed to be inclusive of people from around the globe, but perhaps there has been a (necessary) focus on how to improve diabetes outcomes for people in under-resourced countries. Maybe that’s why I find it a little galling when it appears that the day is about showing off your latest diabetes kit or shouting to the globe about how diabetes doesn’t stop people reaching their dreams. I love positivity and I’m often accused of being far too Pollyanna for my own good, but having a good look beyond our own privilege is important if we’re trying to get across a global idea of what is going on in the world of diabetes.

This year the theme is ‘Access to care: if not now, when?’. The World Diabetes Day website is full of resources that explain the theme. There are materials you can share to help explain just what access means to different people. 

It all seems to be a little bit of a throwback to community initiatives of the past. The diabetes community has been the creators of some absolutely stellar campaigns – ideas that seem to have been founded in similar frustrations about which I’m smashing on my keyboard today. In 2014 there was a campaign that asked us to ‘Put the World back in WDD’ which was in response to there being a very Western focus on World Diabetes Day. Sometimes it feels that some things never change. The #Insulin4All hashtag that was first used to highlight how people in under-resourced countries struggle to access insulin is now most often linked with insulin pricing in the US.

Access means different things to different people, and the materials the IDF has put together consider this. Even if you live in a well-resourced country, with decent subsidised, tax-payer funded (never free!) healthcare, it’s likely that some part of your diabetes care is still difficult to access. It may not be insulin or diabetes supplies that are your access issue – it could be mental health support or different tech solutions.

Here in Australia, thanks to Medicare, the PBS and the NDSS, we have well-subsidised diabetes care. It’s not perfect, but it is certainly better than I hear from friends in other places around the world. But there definitely are still deficiencies in our care. Mental health care is limited – and almost impossible, it seems, to access. Only 50% of people with type 1 diabetes can access subsidised CGM and Flash GM through the NDSS. People in rural and remote areas of the country have far more difficulty accessing quality, regular diabetes care. The outcomes for Indigenous Australians with diabetes fall far behind. As always, people who are disadvantaged in some way are disproportionately affected, and face more difficulties accessing the care they need.  

How you choose to celebrate (or not) this month and World Diabetes Day is entirely up to you. You may choose to ignore the ‘official’ theme of the day and focus more on other initiatives and once again, all perfectly okay. Just as YDMV, so may your diabetes advocacy. 

But if you are interested in focusing more on access, have a look at the World Diabetes Day website and pledge your support for greater access to diabetes care. Read about the Resolution that was adopted by United Nations Member States that calls for urgent, coordinated global action on diabetes. 

Look, I know. UN Resolutions don’t sound nearly as sexy as a six pack with a CGM plastered to it, but it is pretty cool that the WHO and the UN are talking diabetes. 

And while celebrating the centenary of insulin, learn where insulin is not easy to come by, and why that is. Through volunteer work supporting both Life for a Child and Insulin for Life, I have learnt a lot about the challenges faced by people with diabetes in under-resourced countries. If you can, please consider making a donation this month to either, or both, charities. 

And if looking to the community, it’s wonderful to know that there will be a docday° event on World Diabetes Day that is dedicated to the theme of access. You can learn more about that event here. It’s free to join, and will be live streamed on Facebook – you don’t even need to sign up.

But perhaps a final thought. How great would it be if those with really, massively high followings, (and followings not-only-in-the-diabetes-community), used this time to talk about making a real difference – a difference to people with diabetes who are struggling to access the basic drugs and supplies to actually live with the condition. 

Sure, ‘seeing diabetes’ helps raise awareness, but as ever, I ask how much of that actually cuts through and gets out of the community that is already seeing diabetes every single minute of every single day? 

A poster from the IDF World Diabetes Website. (Click image to be taken to site.)

I facilitated an event for Ascensia (disclosures at the end of this piece) last night/early morning and the crappy time was partly (mostly) my fault, because although I sacrificed the Aussies and suggested we draw the short straw in the time zone lottery, I forgot that daily saving would have kicked in for us meaning kick off time was 11pm and not 10pm. That may not seem much – I mean, what’s an hour? – but there is definitely a psychological barrier about doing work after midnight. (Anyway, I digress, and that paragraph has just about put me to sleep). 

The reason for last night’s adventures after dark was a facilitating gig for Ascensia’s latest Diabetes Social Media Summit (DSMS). The thing I love about (and why I am so keen to be involved) in these Summits is because they have tacked some difficult topics that are often hidden away. 

This one was no different in that we looked to address something that needs more attention – diabetes and women’s health. In my introduction, I wanted to make the point that diversity and inclusion is important when speaking about any aspect of diabetes, and that for us to be truly inclusive in a discussion about women and diabetes, we needed to hear from women who represent all corners of the diabetes world. I particularly referred to needing better representation from women in the LGBTQIA+ community. 

The other thing that we had wanted to make sure that we didn’t focus too much on diabetes and pregnancy, because so often that is the only easily information about women’s health and diabetes that can be easily found (and saying that, there does seem to be a bias towards women with type 1 diabetes). Of course, understanding and being aware of how diabetes can impact on pregnancy is important, but it is certainly not the only issue that women with diabetes want or need to know about. 

In fact, one of the discussion points was that for some women, pregnancy is not a topic they want discussed. There is the assumption that all women of childbearing age need information about having a healthy baby when that is not the truth. Contraception discussions do not necessarily equal an invitation for pre-pregnancy counselling, and there needs to be some sensitivity in how healthcare professionals in particular raise the topic, and rid themselves of the belief that all women want to have kids.   

There is so much more to talk about. So, so much more. 

We touched on how much our cycles can impact and influence glucose levels (and a very amusing tangent where we joked about how when we see monthly perfect glucose patterns, they clearly don’t belong to people who menstruate – or people who understand the absolute havoc hormones can wreak on CGM traces).

We spoke about birth control and how the OCP can also make a significant difference to glucose levels, yet many of us were not told about that. 

Of course, we spoke of menopause, but only briefly; briefly not because it’s not an important topic (or a super relevant topic), but because we just got caught up talking about other things (and perhaps my facilitating skills weren’t as tight as usual).

And we spoke about how cultural gender issues need to be shown and understood so that the experience of privileged white women with diabetes are not seen as the only experiences. 

For me, the central message that I heard time and time and time again was that topics about the very things that occupy a lot of the headspace of women with diabetes are simply not discussed with us. And there is little research to inform our decision making, or even to help us form the right questions to ask. At best, we are given some piss-weak explanation that points a finger at diabetes being to blame. At worst, we are dismissed. 

I do wonder when research and diabetes education will catch up. I know that there are some wonderful researchers doing some important work here, but we are so far from normalising discussions about women’s health and diabetes as part of our typical healthcare routines. We’re miles away from getting rid of the preconceived and outdated ideas about women’s sexual health. 

Beyond discussing different women’s health matters, we also spoke about just how these discussions fit in the diabetes community. This was a completely unplanned turn for the summit (it was not a topic on the agenda), but I’m glad we had it and I’m glad that I am writing about it. Because of the nature of women’s health, sex and diabetes, there is a lot of taboo, shame, fear, and vulnerability. I know that some of the rawest and most open I’ve been in my writing has been when I have been dealing with moments in my life that were so, so hard and I was so, so vulnerable. When I look back, I sometimes wonder if I was right to hit publish after writing, and perhaps I should have tucked away the paragraphs until I was feeling stronger. Or not published at all. While I have been told that my words have provided some comfort to others facing similar challenges, it left my gaping, open wounds very public and visible. 

After writing about miscarriages, I’ve been called selfish for wanting to have a child and potentially passing on diabetes to them. Writing about my fears of passing on diabetes to my child I’ve been told that perhaps I should have thought of that before I got pregnant. Speaking about body image concerns, I’ve been told to toughen up and stop being so shallow. I’ve seen and watched other women with diabetes experience the same thing, and I feel their pain as I watch them navigate the muddy, and sometimes distressing waters. 

We spoke about how women are treated in the diabetes community, particularly when we write about struggles and difficulties, and the words and terms that are thrown our way when we dare to share how we are feeling. The ‘angry woman’ trope that I’ve written about before has been directed to many others too. 

These discussions are real, and they are necessary. I am one of the loudest, most vocal supporters of peer support and have spoken about the value and importance of diabetes peer support and the online community on stages literally around the globe. Peer support saved me at times when I thought I was broken beyond repair. But it also can be a source of pain and bullying and nasty confrontations, and perhaps we need to have those discussions too so that when someone decides that they are ready to share and be especially vulnerable that they look out for themselves as much as looking out for the community. It’s all very well to want to share to connect and help with our own and others’ isolation but leaving ourselves exposed isn’t easy. 

One of the attendees last night reminded us that we could share with selected friends in the community, still allowing for that peer support but under the protection of a safe space. It’s interesting, because until maybe two years ago, I had never experienced how unsafe the community can be to individuals. I’d not felt that before. While I still share a lot, these days  I’m more inclined to turn to those trusted friends in the DOC who I know will be honest, open, but never nasty or judgemental. 

Online spaces are different for women than they are for men. The misogyny that is inbuilt to even those that we think are allies comes out, often surprising us, as throwaway comments about a woman’s age or appearance. It is ever present in the diabetes community too. I’ve rolled my eyes as some of the most vocal advocates who have loudly aligned themselves as being supporters of women, revert to type, with snide sexist commentary. I’ve seen people in the DOC referred to as ‘angry old women’ for daring to be furious, older than 25 and a woman! I roll my eyes now when I know someone has called me angry. I also know that they’ve just announced to everyone how threatened they are of women who dare to not go quietly, and how they expect us to remain in our place!

There was so much more that we could have spoken about last night. We didn’t touch on body image and disordered eating (and yes, I know that this is not the domain of women only, but this is about us!), we didn’t talk about sex all that much either, even though it is often highlighted as an issue that needs more coverage and information. Again, it’s not because they are not important topics; it was because the fluid conversation took a feminist turn that highlighted a highly biased social and healthcare environment where it is seen as perfectly fine that the needs, and concerns of fifty percent of the diabetes community are barely considered.

Perhaps if we had a more feminist approach to, and model of, healthcare, the misogyny that has meant the topics important to us have not been researched, and are not discussed, could be eliminated. And women with diabetes would not be feeling ignored.

Disclosure

I was invited by Ascensia to help plan the agenda for #DSMSWomen and facilitate the discussion. I have been paid an honorarium for my time. 

Another large diabetes scientific conference is happening and alongside it, another docday in the can. 

If you go back through the Diabetogenic archives, you’ll find a bucketload of posts about previous docday° events, including the very first one which was memorable for being in an overheated backroom of a café in Stockholm, the cinnamon buns served at said café, and Josephine, a diabetes advocate from Sweden stripping down to her underwear to show off her Anna PS gear. (If you’re looking for tops and jocks to snugly store insulin pumps, Anna PS is still the best place to go!)

It’s a far slicker event these days. Even before we went all virtual, the IRL events were held in cavernous convention centres alongside the actual conference. This was great for lots of reasons: it means that you can easily pop into docday° from the main program, and a variety of stakeholders started to come along. While docday° very much remains the domain of diabetes advocates and the work in the community, it was great to know that we were sharing our news with HCPs, researchers, industry and more. Plus, the temperature control was better. The biggest negative was that cinnamon buns were not as easy to find. 

Last night’s docday° was as memorable as ever, with a dynamic program of advocates from across the globe. A number of people wanted to address the issue of diabetes and stigma, and I introduced this topic with a quick overview of the Diabetes Australia National Diabetes Week Campaign, and one of the videos we made. From there, we heard Ken Tait and Michael Donohoe speak about the stigma experienced by people with type 2 diabetes, and Salih Hendriks and Dan Newman speak about how stigma impacts on open discussions about diabetes-related complications. Dan’s talk was one of the most powerful I’ve ever heard, and I will be thinking of his words for a long time. 

There was lots more in the two-hour event. Please do watch it!

I am an advisor to the #dedoc° voices program. I do not receive any payment for this role. 

I applied for and received a press pass to attend EASD 2021. 

I probably should stop thinking of my job as ‘my new job’. I’ve been at Diabetes Australia now for well over five years. But for some reason, I still think of it that way. And so do a lot of other people who often will ask ‘How’s the new job?’

Well, the new job is great, and I’ve enjoyed the last five years immensely. It’s a very different role to the one I had previously, even though both have been in diabetes organisations. 

One thing that is very different is that in my (not) new job I don’t have the day-to-day contact with people with diabetes that I used to have. That’s not to say that I am removed from the lived experience – in fact, in a lot of ways I’m probably more connected now simply because I speak to a far more diverse group of people affected by diabetes. But in my last job, I would often really get to know people because I’d see them at the events my team was running, year in, year out. 

Today, I got a call from one of those people. (I have their permission to tell this story now.) They found my contact details through the organisation and gave me a call because they needed a chat. After a long time with diabetes (longer than the 23 years I’ve had diabetes as an annoying companion), they have recently been diagnosed with a diabetes-related complication. The specific complication is irrelevant to this post. 

They’ve been struggling with this diagnosis because along with it came a whole lot more. They told me about the stigma they were feeling, to begin with primarily from themselves. ‘Renza,’ they said to me. ‘I feel like a failure. I’ve always been led to believe that diabetes complications happen when we fail our diabetes management. I know it’s not true, but it’s how I feel, and I’ve given myself a hard time because of it.’ 

That internalised stigma is B.I.G. I hear about it a lot. I’ve spent a long time learning to unpack it and try to not impact how I feel about myself and my diabetes. 

The next bit was also all too common. ‘And my diabetes health professionals are disappointed in me. I know they are by the way they are now speaking to me.’

We chatted for a long time, and I suggested some things they might like to look at. I asked if they were still connected to the peer support group they’d once been an integral part of, but after moving suburbs, they’d lost contact with diabetes mates. I pointed out some online resources, and, knowing that they often are involved in online discussions, asked if they’d checked out the #TalkAboutComplications hashtag. They were not familiar with it, and I pointed out just how much information there was on there – especially from others living with diabetes and diabetes-related complications. ‘It’s not completely stigma free,’ I said. ‘But I think you’ll find that it is a really good way to connect with others who might just be able to offer some support.’ 

They said they’d have a look. 

We chatted a bit more and I told them they could call me any time for a chat. I hope they do. 

A couple of hours later, my phone beeped with a new text message. It was from this person. They’d read through dozens and dozens of tweets and clicked on links and had even sent a few messages to some people. ‘Why didn’t I know about this before?’, they asked me. 

Our community is a treasure trove of support and information, and sometimes I think we forget just how valuable different things are. The #TalkAboutComplications ‘campaign’ was everywhere a couple of years ago, and I heard from so many people that it helped them greatly. I spoke about it – particularly the language aspect of it – in different settings around the world and wrote about it a lot.

While the hashtag may not get used all that much these days, everything is still there. I sent out a tweet today with it, just as a little reminder. All the support, the connections, the advice from people with diabetes is still available. I hope that people who need it today can find it and learn from it. And share it. That’s one of the things this community does well – shares the good stuff, and this is definitely some of the good stuff!

Want more? 

Check out the hashtag on Twitter here.

You can watch a presentation from ATTD 2019 here

Read this article from BMJ

I don’t know too many people living with diabetes who haven’t experienced stigma. I know I certainly have. In twenty-three years of living with diabetes, it’s come from all directions: the media, healthcare professionals, work colleagues and even family and friends. That’s because people outside the diabetes community often have pre-conceived ideas about what diabetes is all about, and a lot of those ideas are plain wrong.

But stigma doesn’t only come from outside the community. In fact, for some people with diabetes, some of the most harmful and hurtful experiences of stigma has actually come from other people with, or affected by, diabetes. [Click here to read more…]

DISCLOSURE

This piece was published today on the Diabetes Australia website, and I wrote it as part of the organisation’s National Diabetes Week campaign on diabetes stigma. I work for Diabetes Australia, and am sharing this because I’ve chosen to – not because I’ve been asked to. The words here are my own, and perhaps the only thing missing from the published text is some of the decorative language I often use when speaking about diabetes-related stigma. Bottom line – all stigma sucks. Let’s #EndDiabetesStigma now.

I generally don’t do my best work at 2am. I’m just not the spring chicken I used to be, and being awake, engaging and remotely coherent when I am usually in the middle of some decent REM sleep is a big ask these days. 

But living in Australia, and wanting to remain as active as possible in global diabetes work and activities has meant that I have had to suck it up and learn to get on with it. I’ve become expert at stealthily getting up about so as not to wake my family, moving like a ninja about the house. I make a pot of tea, have hypo supplies handy, and layer on red lipstick to create the illusion of being alert and awake, completely together and impossibly glamourous (I fear I am only fooling myself) before settling into do whatever it is that I am needed to do in the wee hours. 

Last night, it was a 1.30am call for a 2am event. I’d snuck in a couple of hours sleep ahead of the rude alarm that woke me. When I logged onto the event platform, I still had my ‘morning voice’ on, but the hot tea helped lubricate – and wake up – my vocal cords. Thankfully I was only required to speak and not sing an opera. (Silver linings!)

But despite grumbling about the hour, I’m glad I did it. Because the following couple of hours was a discussion about hypoglycaemia that combined lived experience stories from people with diabetes, peer support, all articulated with fabulous input from clinicians and researchers.  It really was an exercise in how to put together an online diabetes event! 

The event was the Lilly Hypo Summit, and I co-hosted with Bastian Hauck who is an absolute pro in any hosting seat. When I was asked to be involved, I had visions of a very staged and scripted event. I have worked with industry enough to understand that their compliance rules often means that events are required to be defined to the nth degree with all content being scrutinised by legal eyes, leaving little room for spontaneity or free discussion. How could we possibly get the true experience of hypos across if we were constrained by needing to stick within a pre-planned programme? I mean, hypos don’t do that, so discussions about them surely shouldn’t have to – and simply couldn’t if we were to do it justice. 

Amazingly, we managed to put together an engaging and somewhat impulsive and free-formed event with full support from the global engagement team. They trusted the PWD who were shaping the event enough to understand that what we were trying to do was be respectful to the people telling their stories by not in any way censoring them. Plus we promised no one would throw caution to the wind, and talk about replacing their traditional diabetes management with bathing under a full moon and dancing to the beat of an inner drum (or something), which considering last night was a full moon, was a pretty important promise to make. We created a space for PWD to share their stories and highlight the incredibly complex challenge that is hypoglycaemia, and we punctuated those stories with research and clinical advice. 

I knew that it was going to be a good event, because the speakers were remarkable. When it was over, I had dozens and dozens of messages from people congratulating me on my hosting, but there is a secret that I feel I should share. Hosting is impossibly easy when you are interviewing brilliant people. And it was programme overflowing with brilliant people. The PWD who spoke had fascinating tales to tell, and told them in wonderfully disarming ways. I’d not met them all and it was great to be just as surprised as the audience when hearing their stories. And then we had two remarkable researchers who I respect greatly, and I know to be incredible communicators.

I really want to write more about what was discussed at the event, and will try to do that in upcoming posts, but for now, I just want to share this world cloud. We asked people to describe their hypos in one word. I’ve done exercises like this before and they never, ever reveal the same words. This is what the group came up with last night:

But to finish this post, I want to ask the question that one of last night’s HCPs, Pratik Choudhary, from the Leicester Diabetes Centre in the UK, asked us: ‘Do you see hypos as a slope or a cliff face?’ I can’t stop thinking about this, because I’ve never been asked about hypos this way, but it makes so much sense to consider them in this context. Of course, there are so many factors at play, but this either / or scenario does perfectly capture the in-the-moment way that I feel about hypos. I wonder what you might think about your hypos. Does it fit in here, or is it something completely different?

DISCLOSURE

I was an advisor to Lilly Diabetes for the Hypo Summit. I have been paid for my time. I have not been asked to write anything about the summit, but am sharing because there was so much amazing content at the event. No one has reviewed this post prior to publication. 

Last night, my gorgeous friend Andrea tweeted how she had seen someone wearing a CGM on the streets of Paris. When she rolled up her sleeve to show him her matching device, he turned and walked away. ‘Guess you can’t be best friends with every T1D’, she wrote. ‘Diabetes in the Wild’ stories have been DOC discussion fodder for decades – including wonderful stories of friendships being started by a chance encounter, and less wonderful stories such as Andrea’s most recent encounter. I was reminded of the many, many times pure happenstance of random diabetes connection has happened to me.

There was the time I was waiting for coffee and another person in line noticed my Dexcom alarm wailing, and the banter we fell into was so comfortable – as if we’d known each other forever! 

And that time that someone working the till at a burger flashed her CGM at me after seeing mine on my arm and we chatted about being diagnosed as young adults and the challenges that poses. 

Standing in line, queuing for gelato, is as good as any place to meet a fellow traveller and talk about diabetes, right? That’s what happened here.

And this time where I spotted a pump on the waistband of a young woman with diabetes, and started chatting with her and her mother. The mum did that thing that parents of kids with diabetes sometimes do – looking for a glimpse into her child’s future. She saw that in my child, who was eagerly listening to the exchange. But I walked away from that discussion with more than I could have given – I remember feeling so connected to the diabetes world in that moment, which I needed so much at the time.

I bet that the woman in the loos at Madison Square Garden wasn’t expecting the person who walked in at the exact moment she was giving herself an insulin injection to be another woman with diabetes. But yeah, that happened

I’ll never forget this time that I was milliseconds from abusing a man catcalling me out his car window, until I realised he was yelling out at to show me not only our matching CGMs, but also the matching Rockadex tape around it. My reaction then was ridiculous squealing and jumping up and down!

Airports have been a fruitful place to ‘spot diabetes’, such as the time my phone case started a discussion with a woman whose daughter has diabetes, except we didn’t really talk about diabetes. And the time another mum of a kid with diabetes was the security officer I was directed to at Amsterdam’s Schiphol Airport. She was super relaxed about all my diabetes kit, casting her eyes over it casually while telling me about her teenage son with diabetes. 

The follow up to this time – where I introduced myself to the young mum at the next time who I overheard speaking about Libre, and saying how she was confused about how it worked and how to access it – but not really being all that sure about it, is that she contacted me to let me know that she’d spoken with their HCP about it, had trialled it and was now using it full time. She told me that managing diabetes with toddler twins was a nightmare, and this made things just a little easier. 

Sometimes, seeing a stranger with diabetes doesn’t start a conversation. It can just an acknowledgment, like this time at a jazz club in Melbourne.  And this time on a flight where we talked about the Rolling Stones, but didn’t ‘out ourselves’ as pancreatically challenged, even though we knew … 

But perhaps my favourite ‘Diabetes in the Wild’ story is one that, although I was involved, I didn’t write about. Kerri Sparling wrote about it on her blog, Six Until Me. Kerri was in Melbourne to speak at an event I was organising, and one morning, we met at a café near my work. We sat outside drinking our coffees, chatting away at a million miles an hour, as we do, when we noticed a woman at the next table watching us carefully. We said hi, and she said that she couldn’t help listening to us after she heard us mention diabetes. She told is her little girl – who was sitting beside her, and was covered in babycino – had recently been diagnosed. I will never forget the look on the mother’s face as two complete strangers chatted with her about our lives with diabetes, desperately wanting her to know that there were people out there she could connect with. I also remember walking away, hoping that she would be okay.

Five years later, I found out she was okay – after another chance encounter. I was contacting people to do a story for Diabetes Australia and messaged a woman I didn’t know to see if she, along with her primary aged school daughter would be open to answering some questions. Turns out, this was the woman from Kerri’s and my café encounter. She told me how that random, in the wild conversation made her feel so encouraged. She said that chance meeting was the first time she’d met anyone else with diabetes. And that hearing us talk, and learning about our lives had given her hope at a time when she was feeling just so overwhelmed. 

I know that not everyone wants to be accosted by strangers to talk about their health, and of course, I fully respect that. I also know there are times that I find it a little confronting to be asked about the devices attached to my body. But I also know that not once when I’ve approached someone, or once when someone has approached me has there been anything other than a warm exchange. I so often hear from others that those moments of accidental peer support have only been positive, and perhaps had they not, we’d all stop doing it. It’s a calculated risk trying to start a conversation with a stranger, and I do tread very lightly. But I think back to so many people in the wild stories – the ones I’ve been involved in, and ones shared by others – and I think about what people say they got out of them and how, in some cases they were life changing. A feeling of being connected. The delight in seeing someone wearing matching kit. The relief of seeing that we are so alone. The sharing of silly stories, and funny anecdotes. And in the case of that mum with a newly diagnosed little kid, hope.

Devices on arms make spotting diabetes in the wild a little easier. This beautiful design is from Jenna at @TypeOneVibes. Click to go to her Instagram page.

Today’s post is dedicated to Andrea whose tweet kicked off this conversation in the DOC last yesterday. Thanks for reminding me about all these wonderful chance meetings, my friend.

Last night, all tucked up in my study at home, I participated in my eleventh (I think?) #docday° event. (A refresher: #docday° is a place for diabetes advocates from the diabetes community to come together, meet, mingle and share the work they are doing. The first #docday° was in a tiny, overheated backroom of a cafe in Stockholm that served outstanding cardamom buns. It coincided with EASD that year. After that, the events were moved to rooms at the conference centre where the diabetes meeting is being held, and an invitation is open to anyone and everyone attending, including HCPs, researchers and industry reps. I’ll link to previous pieces I’ve written about #docday° events past at the endow today’s post.)

The first #docday° for 2020 heralded in a new phase. It was at ATTD in Madrid, #dedoc° voices had been launched and that meant that there were even more PWD at the conference, attending #docday° and sharing their diabetes advocacy stories. All #dedoc° voices scholarships had been awarded to advocates from Europe because the budget wasn’t huge, and didn’t extend to flying in and accommodating people from other continents.

And then, the world changed, and flying and accommodating people at diabetes conferences didn’t matter anymore. And that meant that we could open up the scholarship program to people outside of Europe, and provide people from other parts of the world with registration to attend the EASD and ISPAD conferences. It means that mine wasn’t the only Aussie accent heard at #docday°. And it meant that people from further afield found their way to a seat at the table. These advocates – like the others I’d heard before them – were remarkable and doing remarkable things. I think perhaps the thing that has linked everyone who has been involved – wherever they are from – is their determination and desire to make things happen. It’s a common thread – that hard work and not expecting anyone to hand us opportunities that stands out.

A few years ago there was a discussion during a tweetchat about diabetes and advocacy, in particular about getting involved in advocacy efforts. In response to one of the questions posed – something do with how to get more people involved in advocacy – someone said something along the lines of ‘If someone gave me an opportunity to be an advocate, I’d take it.’ I remember being absolutely flabbergasted by that tweet, because, in my experience, that’s not how advocacy works. When I think of all the people who are visible in the diabetes advocacy space (and probably many that are not all that visible) no one was ‘given an opportunity to be an advocate’. It reminded me of the very first bloggers summit I went to at EASD in Berlin in 2012. As is usually the case when there are a group of PWD at an event together, there were questions online, asking why those people were there. Someone pointed out that it was a group of bloggers – people with diabetes who write and share their experiences about diabetes – and someone who was rather annoyed at not being invited said ‘Well, I’d like to have been invited. I don’t have a blog or write or anything, but I’d still like to be invited.’ Even then, relatively new to this all, I remember thinking ‘That’s. Not. How. This. Works’.

While no one is handing out ‘opportunities to be an advocate’, #dedoc° voices is helping in other ways. The program is open to everyone, and takes care of many of the barriers that make attending difficult. No one needs an invitation, or to be involved in a diabetes organisation, or work with industry, or to be invited. Every single person who is part of the diabetes community is welcome to apply. And if you are successful, you are given an opportunity to speak at #docday°. Actually, EVERYONE is welcome to speak at #docday°! Again, it’s just a matter of contacting the team and letting them know you are doing some great work that benefits your community.

At last night’s #docday°, I was (as I always am) in awe at what people are achieving and what they are doing. Tino from Zimbabwe is one of the most amazing advocates I’ve ever come to see, working alongside his local diabetes organisation to improve access to education in his country and beyond. Nupur, Snehal and Rohan from Blue Circle Diabetes Foundation in India are running a NFP, raising diabetes awareness with just one example of their work being a hotline they’ve set up to provide psychosocial support for PWD. And Sadia from Meethi Zindagi spoke about all the work the organisation is doing, with a special focus on the health needs of women with diabetes. We heard from Ines who built and grew a program that supports kids with diabetes to participates in sports, and Delphine who started and runs a club specialising in supporting runners and walkers with diabetes. Both women are from France and their talks last night made me put my runners today and beat the pavement around my neighbourhood! Still in France, Leonor and Nina spoke about one of the more recent additions to the #LanguageMatters movement with their new position statement.

There were others, but instead of reading about them here, why don’t you watch them. The video from the whole event is available for you to watch. I know you’ll be inspired. And I hope that if you have something you want to share you’ll think about joining in next time!

More about #docday°

docday° at EASD 2016

docday° at EASD 2017

docday° at EASD 2018

#docday° at EASD 2019

Disclosure

I am an advisor to the #dedoc° voices program. I do not receive any payment for this role. 

I applied for and received a press pass to attend ATTD 2021. Thanks to the Tadej Battelino and the ATTD team for making this possible to press accredited folks.

There have been a number of times here on this blog and in other online platforms that I have been critical about the low carb community. Actually, let me be more specific. I have been critical of the response from certain corners of that community, particularly the corners that are free with their fat shaming, and accusing people with diabetes who choose not to eat low carb as not caring about their health, and attacking others for daring to suggest that there could possibly be more than one way to eat. This has come from a long list of incidents I’ve either seen or have been involved in, such as the time I was fat shamed for saying that intermittent fasting is great for some, but not for everyone, and the time that people in the LC community got angry at the idea of saving the lives of children with diabetes from developing countries

I guess I shouldn’t have been surprised really at what happened earlier this week just before I published a post on diabetes and menopause. As I often do, I look to the community for others’ experiences. And so, I tweeted (and shared on Facebook) this:

The responses were many and great. One aspect of the generosity of the DOC is the willingness and openness to share not only experiences, but to offer tips and tricks for what has worked for them. I’ve always found that so amazing, especially when addressing issues that are considered a little taboo. Menopause is one of those issues. But even so, there were so many replies from people who have either gone through menopause, or started to think about it. 

And then, out of the blue, came a reply from a nutritionist. A nutritionist I have never encountered before. I don’t follow him on Twitter, I have no idea who he is. Which is all fine. My Twitter is public and if I ask a question everyone is free to offer their input. Here is his reply:

I replied that I am not a healthcare professional. And then came this:

Followed by this from me:

(I’m not going to share anymore of the tweets in what turned out to be a rather long back and forward thread, but if you click on any of the tweets above you will be able to find the whole mess.)

He kept going, demanding to know why I am critical of low carb diets and health professionals who promote them (which he apparently had deduced from reading through my Twitter feed). I’m not. Which is what I repeatedly tweeted to him in responses to his continued demands that I explain my stance on diets and diabetes, and, as a healthcare professional, I must stop giving ‘personality-driven healthcare advice’. I reminded him that, a) I am not a HCP (which I had already stated), and, b) I share my experiences, not give advice. He helpfully suggested that my blog posts read that way. 

I had asked about menopause. I asked people with diabetes who had either been through menopause, were going through it now, or thinking about going through it. I asked whether it had been a topic of conversation with their HCPs. 

This bloke – who doesn’t have diabetes and has never experienced menopause – had nothing to offer, other than attacking me for my choices. And my choice is that I believe in choice. 

It’s not okay for a healthcare professional to enter into a discussion with a person with diabetes seeking peer support, and telling them what it is that they do and don’t do in that community. I am so over this sort of paternalism in healthcare. I’m over HCPs bullying their way into our community and trying to shape it into what they want. 

I’d also add that a man hijacking a conversation started by a woman about menopause is pretty shitty behaviour. I’m also over misogyny and the way male healthcare professionals centre themselves in discussions that are not about them. It happens all the time. It happened on Monday.

A tweet about menopause. And not even about food and menopause! It sounds somewhat ridiculous really. I don’t look for this sort of reaction, and I certainly have never baited anyone from the LC community. I don’t post photos of high carb meals accompanied by a ‘dare you to say something’ comment. (But I should say, that even if people are doing that, there is still no valid reason to criticise what another person is eating** or criticise the way they choose to eat.)

I understand that there will always be difficult people in any community. Unfortunately, it is people like this who are often the most seen from the LC community. And it’s why I am critical. But be clear – I am not critical for the advice they are giving, or the eating plan they are following. I am critical of, and will continue to call out, this sort of behaviour. 

**Okay, I know that I said that there is no valid reason to criticise what another person is eating. But I am adding a caveat to that because I do (and probably will continue to) criticise anyone who wants to drink flavoured coffee. Or instant coffee. Or coffee from a bag. I fully acknowledge and accept my status as a Melbourne coffee snob and will not be entering into any discussions that caramel, pumpkin spice or unicorn flavourings are okay. They are not. Don’t @ me.

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