Sam Seaborn : You wrote a concession?

Toby Ziegler : Of course I wrote a concession. You want to tempt the wrath of the whatever from high atop the thing?

Sam Seaborn : No.

Toby Ziegler : Then go outside, turn around three times and spit. What the hell’s the matter with you?

This is from a scene in an episode of the West Wing, one of my all-time favourite TV shows. It’s election night, and President Bartlet’s staff are waiting for the call to be made. His communication director, the ever-curmudgeonly Toby Ziegler, is admonishing his deputy, Sam Seaborn, for making any sort of prediction or assumption about the outcome of the election, even though the President is a shoo-in for his second term. 

I get it – the idea of jinxing things is one of those superstitions that many of us hold close. I believe in science and evidence and research and nothing else, but even so, I throw salt over my shoulder, tap the table (or my head) and say ‘touch wood’ anytime I predict or claim something positive is going to happen. 

This introduction is purely to lay the foundations for a lot of tapping on wooden doors and tables, throwing salt over my shoulder, wearing an evil eye charm, and making the ‘cornuto’ sign (Italians will know…) at my laptop at the end of each sentence, because I am sure that by the end of the week (if not sooner), this post will not have aged well at all.

But anyway, here goes…

COVID has made its way to Casa Diabetogenic. We’ve spent the last two years desperately doing all we could do avoid it, obsessively following health orders to the letter, being super cautious about being in crowds, amassing a huge collection of masks (and wearing them any time we left the house), and being a pin-up family for vaccinations, getting our jabs the minute we could, and boosted to boot. 

Despite that, COVID announced itself on Sunday morning after a round of RATs. In the olden days, we would go out to brunch. In the present days, we do a saliva test to see if we have the plague.

Two of the three inhabitants of the house were positive. The one with diabetes (me!) was not. And I remain that way (salt over shoulder) forty-eight hours later, (touch wood). 

The positive tests became hour zero and from then on, we were in full isolation mode. Aaron was confined to our bedroom, the kidlet to her own. If either of them need to leave their room for any reason, they send out an alert, and mask up, and wipe down any surface they’ve as much as looked at sideways, and empty half a can of Glen20 in their wake. 

I prep and deliver all food and drinks to rooms and am at the beck and call of the infirm. We Facetime each other throughout the day to chat and check in on symptoms. I bossily remind them to keep up fluids and eat the segmented oranges I’ve delivered to them. I am annoying myself, so can’t even being to imagine how much I’m annoying them. We haven’t been in the same room as each other at all, and only see each other in the flesh when we are eating meals in the garden – sitting away from each other, necessitating speaking in very loud voices, giving our poor neighbours unwanted insight into our conversations. 

It’s slightly absurd. Until those two lines appeared on those two tests on Sunday morning, we had been carrying on as normal and not giving a thought to needing to isolate from each other. I’d just gotten out of bed, a bed I’d been in for eight hours with my COVID positive husband lying right there. I’m pretty sure the night before I’d handed him my fork so he could have a taste of something I was eating. While we were super cautious about being around others, we didn’t for a second think that we needed to worry about our little unit. Home was meant to be a sanctuary. Now I’m trying to elude the little virus that could from inside our own home. It’s the shittiest game of dodgeball I’ve ever played. 

My anxiety has remained mostly in check. I’ve gone into fight mode as I desperately try to disinfectant spray any hint of the virus. I only care that my family is okay and not feeling too poorly or taking a turn for the worse in any way. I’m worried that they won’t recover easily and quickly. I can’t stop thinking about long COVID.

And then there are the flashes of terror (like the middle of the night when I’m lying awake) and I wonder how my body WILL behave when (if?) it gets COVID and then, for a few moments in the cover of darkness, I find myself becoming a statistic, explained away by my underlying condition. They’re the words that ring in my ears thanks to every single presser from the NSW government. It’s so bleak and terrifying in those moments, and all I can do is remind myself that even though there are no guarantees, I am doing all I can. 

I’m obsessively checking my CGM because if ever there was an early warning alarm system, it’s my glucose levels. It’s a reliable tell to let me know that an infection is brewing. Straight, steady, in-range numbers greet me in the mornings, insulin doses not needing to be superpowered by Loop to keep me that way. 

All the while, I’m trying to understand how it is possible that I remain COVID free (cornuto sign). Because that makes no sense at all. Other than to believe I am some sort of extraordinary, turbocharged powerhouse of immunity (I mean, the vaccines and boosters probably have something to do with it too…)

Friends and family keep checking in and I boast about how, for once, my broken body is being legendary. ‘Are we…superhuman,’ asks my friend Georgie who has also managed to remain COVID-free despite being exposed left, right and centre, even though her immune system and mine match in their hopelessness. (Georgie, I just waved my evil eye charm around for you.)

I have developed this ridiculous superiority complex that is bound to be my downfall. Is it possible that my stupid, fucked up, overactive immune system that hasn’t shown any reason for me to believe it knows what it’s doing and keeps killing off things it shouldn’t has decided to be overactive in the right way, destroying COVID as it’s tried to move in? Do I have an invisible protective shield around me that has transformed me into some sort of crusader, fighting the evil coronavirus and winning? (There is a small salt mountain now behind me. Also, I’m an idiot.)

But then I remember that pride comes before a fall, and that this body of mine and this immune system of mine are not the sharpest tools in the shed at the best of times. And that thinking, let alone writing for anyone to see, that perhaps I might escape this round of COVID is only going to come back to bite me. And I think that I really should listen to Toby Zeigler, because truly, the last thing I want to do is to tempt the wrath of the whatever from high atop the thing. Probably best I don’t hit publish in that case…

The West Wing

It seems fitting that for my first post for the year, (happy 2022, friends!), I look at how diabetes #LanguageMatters is, (once again), colliding headfirst with COVID communications. 

It’s the age of Omicron, and we are repeatedly, almost obsessively, reassured that this particular strain of concern of the virus we’re all completely sick of (and, for many, sick with) is mild. Mild. Mild. Mild. 

And all I can think about is how damaging that word has been in diabetes communications, and, it seems, it’s quite problematic in COVID circles too.

Mild suggests that something is inconsequential; that it is minor; that it is easily resolved. Mild doesn’t consider the emotional toll and worry people might be feeling about being exposed to a virus that is spreading like wildfire.  

When we talk about mild hypos in diabetes, we’re referring to those pesky hypos that are fixed with a few jellybeans and a couple of profanities. It’s a wham-bam-thank-you-ma’am low that is done and dusted in a few minutes. It’s a quickie. 

Except anyone who lives with diabetes knows that is not necessarily the case. So-called mild hypos can be worrying and stressful and cause anxiety. They can impact on how people feel about their diabetes and confidence. 

Calling them mild has meant that these types of hypos are dismissed, and seen as something that, as well as being easily resolved, can be easily prevented. That’s not how hypos work, and framing them that way can lead to people with diabetes being blamed for not doing what they should have to prevent them, or that they are not something that needs attention.  

Talking about the effects of Omicron is important. It’s good to know that, in general, early results are showing that Omicron is causing less severe illness, despite being highly transmissible. But a mild dose of a serious virus that still has so little known about it isn’t unimportant. It may be less dangerous than previous strains, but it can still be serious. 

There is a flow on effect to defining Omicron as mild. It can mean that it’s not being taken seriously, and people are, perhaps, not being as cautious as they could be. Anti-vaxxers are using this definition as ammunition to further shape and spread their unhinged views, and ignore simple public health efforts, such as wearing a mask and maintaining physical distance. I know this group doesn’t need any help in pushing back against evidence-based measures that clearly help stop the spread of contagious diseases, but I’ve seen them bleat with delight ‘OmiCrOn iS mILd’ as part of their deranged rants, because that’s what they keep seeing and hearing. 

Sadly, calling something mild has led to lousy planning (some would say sheer incompetence) by the government and government agencies. It’s this planning that is needed to help people properly prepare and protect themselves and their community. 

I wonder if we were to ask people what their stress levels are like as they can’t access rapid antigen tests, or can’t afford to pay for them if, by some miracle where the planets have aligned, they find somewhere that has a hidden stock somewhere. And how they’re feeling as supermarket shelves are emptying, lines for PCR tests thread around (many) blocks, and their workplaces are needing to close because so many people are home from Omicron. 

I’m guessing if they were asked, the answer wouldn’t be ‘mildly stressed’. Nor would they necessarily rate the situation in which we find ourselves as ‘mildly inconvenient’.

Mild doesn’t mean insignificant. Anyone who waits for daily numbers and has seen hospitalisation, ICU and death rates climbing knows that. Families of people who are seriously ill, or who have died know that. People like me who have spent the last two years doing everything I can to protect myself because I’m so terrified about getting COVID know that.  

Communication around COVID has been a disaster from the beginning. And two years on, it hasn’t improved. Because here we are: less than two weeks into the new year, and about a month into a new variant and it’s as though we haven’t learnt a bloody thing about how and why words matter when speaking about health. 

Christmas eve and Melbourne is turning it on. Gorgeous sunshine and divine mid-twenties temperatures. It seems perfect and would be if it weren’t for the C word’s new O variant that is looming heavily. I went to the Queen Vic Market this morning with my sister for our traditional oyster breakfast, and kept having to talk myself off the ledge of overwhelming anxiety at the thought of being amongst far more people than I’ve grown comfortable.

But amongst it all, Christmas is here. A huge jar of buttery shortbread stars sits on the kitchen counter, grabby hands reaching in anytime we walk by. Crostoli have been made, eaten and more made. The Christmas tree is decked and glittery, wrapped gifts strewn. There is freshly assembled tiramisu in the fridge, time doing its magic so that when it’s served up tomorrow, it will be a perfectly pillowy delight of coffee and mascarpone. There is lasagna ready for this evening’s small gathering here. Tomorrow will see another two family get togethers and Boxing Day will be the final of the family assemblies.

I feel oddly relaxed, which is lovely because often at this point of the game, I’m a stressed mess with a list the length of all the versus of the 12 Days of Christmas, wondering where I can still find wrapping paper, and hopeful that the local bookshop will still be open for those last minute presents I forgot.

And so, I’m signing off for a few weeks as I enjoy some time off, dappled sunshine to light my days, memories to be made with my beautiful family, a new kitten cuddle, pups to take to the park, friends to hang out with, including some I’ve not seen in two years who somehow miraculously booked tickets on flights that actually made it to Australia. There will be walks along the beach, afternoons languishing on the back deck with my Christmas books (presumptuous of me, but it’s a good bet), outdoor tables at cafes where I’ll sit for hours, alternating between hot and iced lattes, and lots of food. And as little time as possible dedicated to dealing with diabetes, because I am so lucky that Loop has been part of my life

Two years ago, I was wrapping up one of the busiest advocacy years I’d ever had. My passport had been stamped well over twenty times as I flew in and out of countries across the world, presenting, running workshops, sitting in ad board meetings, fighting the good fight. It was exhilarating, exhausting, exciting. And 2020 started off in the same way. Until the world changed. But the advocacy efforts haven’t stopped. In fact, this year was probably my busiest ever. 2022 is already shaping up to be just as involved as this year, more so probably. I’m already scared to look at some months on my calendar, as dates are filling fast. I wouldn’t want it any other way. But that’s next year.

Thanks to everyone who has stopped by this year. I’ve had the most gorgeous messages from people – words of support, asks for help, messages of solidarity. I’m always so grateful to people when they reach out. And I’m grateful to everyone who has taken the time to read my words. I’ve always said that hearing the stories of others helps me make sense of my own diabetes. I hope that perhaps my stories here have helped others in similar ways.

And so, there is only one thing left for me to do before I close my MacBook and let the battery run flat over the next couple of weeks. And that’s make a donation to Insulin for Life’s Secret Santa campaign. Thanks to everyone who has already donated to #IFLSecretSanta this year. Hundreds of dollars of donations followed my earlier post about it. If you’ve been meaning to make a donation, please do. It is truly one of the most important things you can do at this time of the year.

I’m dedicating my donation to diabetes friends who have been incredibly important to me over the last year. Peer support continues to be a cornerstone of my diabetes management – I can’t see that changing any time soon. And I can’t see a better way to say thank you to those who have helped me by supporting a charity that helps others with diabetes.

Icing sugar rain on freshly made crostoli.

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.

The very first time I ever saw or heard anyone speaking of an insulin pump was about 14 months after I was diagnosed. It was National Diabetes Week in July 1999, and I attended an event organised by Reality Check, and supported by Diabetes Vic. Reality Check was a support group of young adults with type 1 diabetes. I don’t remember much from the program at the event, but I do remember a woman called Cheryl Steele. Cheryl was living with type 1 diabetes, and she was sharing her story of using an insulin pump and how it had completely revolutionised her type 1 diabetes management. Three moments from Cheryl’s talk stood out for me: the first was that she was able to be more flexible with what she was eating, the second was that a pump gave her more flexibility with being able to sleep in. And the third was that she loved her pump so much that she threatened to cut the arms off anyone who tried to take it away from her. 

The first time I heard about CGM was years before we had the devices here in Australia. I read about them in online blogs and in support groups led by PWD in the US. I read stories about how this technology was changing the way the managed their diabetes in ways I could only imagine. I heard about Libre for the first time a number of years later when I met Claudio Pelizzeni at EASD, and he shared his experience of using the device as he travelled the world (without taking planes).     

The first time I heard about DIYAPS was at an informal lunch thrown by Medtronic (I think) in 2015 (I think) in Boston (I think). I’m sketchy about the details, but I do remember with great clarity that at the other end of the table was a woman called Dana Lewis who I had seen online and read about, and knew to be amazing, but not yet met in person. She was talking about…well, to be honest, at the time I had no idea what she was talking about. All I could see and understand was that she was doing something that sounded like science fiction. She had a number of devices linked together and there was something totally magical happening.

The first time I heard about Loop (the DIYAPS I went on to use) was on a rainy New York night in January 2017 at a pub in the financial district. I was having a drink with a friend and just as he was taking the first mouthful of his stout he said, ‘Hang on, I need to bolus’, and he pulled his phone from his pocket and pressed some buttons. ‘What the what?’ I asked and he proceeded to explain Loop, how it worked, how he’d woken at between 80 and 100 (4 & 5) every single morning for the three months he’d been using it, and how he was sleeping better than he ever had.

When it comes to technology, it has always been up to me to first raise discussions about different devices or options. After seeing Cheryl talking about her pump, I asked my endocrinologist about getting one and his opening line (and closing line, as it turned out) was ‘They kill people; I’ll never allow one of my patients to use one’. That was the last time I saw him, and I went on the hunt to find an endocrinologist who would support my choice. I started on CGM because I enrolled myself in a trial. I was given my first Libre at a blogger event. I cobbled together my DIYAPS after sourcing what I needed. As brilliant as my HCP team is, they have not been especially proactive about suggesting, or even introducing the idea of, different diabetes technologies. It’s been learning through others with diabetes that has set me on that road. 

When I talk about what peer support means to me, it goes beyond moral support and shared experience. It has been the driving force behind much of the way I choose to manage my diabetes. It has been the impetus for investigating if something new might be right for me. It has paved the way for me to start conversations with healthcare professionals to make access happen. 

Peer support is absolutely essential for the mutual understanding and the tips and tricks for making day-to-day diabetes easier. And I’ve always said that hearing others’ stories help make sense of my own. But it is about much, much more. I’ve detailed the ‘first times’ when it comes to tech, but there have been so many more moments – moments that have helped make that tech work for me in ways I’d not thought, and certainly not had discussed with me by HCPs. 

When I speak with newly diagnosed PWD I ask if they know others. I gently suggest that it may be a good thing to think about – not necessarily straight away, but certainly at some point. I can never repay the debt of gratitude I have for people who steered me in the direction to the tools that make my diabetes life that little bit easier, but I can do all I can to give back and try to do that every day.

Why does everyone want to cure diabetes? I mean, I think it would be GREAT if someone truly managed to cure it PROPERLY. But in lieu of that, everyone with internet access, a Canva account, and their finger on the pulse of the latest superfood (which, when said superfood is a legume it actually is a pulse), is out there busily curing diabetes with whatever snake oil concoction they can come up with. (At this point in time, I am going to take a MASSIVE diversion and say that Snake Oil is a thing and it is sold by a woman named Caroline Calloway who is a scammer and all that is wrong with the idea that we need ‘influencers’ in our life, and I would urge you to NOT pop her name into a Google search right now, lest you want to lose the next five hours of your life, and destroy a few brain cells while you are at it.)

Anyway, where was I? Yes, scam diabetes cures. Scamabetes cures.

Lucky for me, I get at least half a dozen diabetes cures delivered directly to my inbox each week. By lucky, I mean, I wish the fuckers would all leave me alone, but that’s not happening.

On days where I don’t get cures in my inbox, I get invitations to conferences that aren’t real, or asked to write for imaginary medical journals. The positive is that it makes me feel as though I am highly sought after, and people desperately want to hear from me. The negative is that they’re all a con, and that rather than thinking I’m somewhat brilliant, these scammers are hoping that I’m somewhat gullible. 

The scamming is real in the cure diabetes world, and it never ends. Just at the point where you think it’s been rather quiet in the dodgy-cure entrepreneur corner of the globe, there is suddenly a concerted effort to get you to drop some coin on a turmeric and kale chai teatox for the low monthly price of $39.99 plus tax. What have you got to lose?

How the fuck are we meant to navigate our way through it? Twenty-three years in and being a sceptic with a healthy dose of mistrust in strangers approaching me online asking for money and promising me the world has served me well. I start from a position of disbelieving pretty much everything, which has been super useful in the last two years if you think about the rubbish that people (looking at you Clive Palmer) have claimed to be cure-alls. When future Lin-Manuel Miranda writes a musical about the COVID years, there will be a song dedicated to Ivermectin, drinking bleach, and that weird light thing that Pete Evans was trying to sell us for a cool $15K, and a story of vax-crossed lovers where an AZ and Pfizer jabbed couple try to overcome their differences, succeeding only when they are both boosted with Moderna. 

Promises of diabetes cures prey on the vulnerable and the scared. It’s abusive and mean. If diabetes could easily be cured, WE ALL WOULD BE CURED, because I’m yet to meet anyone who wants to live with a lifelong chronic health condition, no matter how much they seem to have their shit together. 

If it were as simple as eating a cucumber (looking at you, whichever Kardashian made that outrageous claim), I’d be living on cucumber granola for breakfast, cucumber sandwiches for lunch and having a liquid dinner of cucumber mojitos, and snacking on cucumber dipped into tzatziki. All. Day. Long. And I bet everyone else with diabetes would be too, because even if we all got sick and tired of cucumbers by day three, it would still be a shedload better than dealing with diabetes. Wouldn’t it? Yes. Yes, it would.

In times where it is so easy to spread misinformation as gospel, people with diabetes are taxed with even more. On top of doing the task of one of our organs, do impressive maths calculations throughout the day, act as a multidisciplinary medical team for ourselves, employ some damn impressive detective techniques, and be the most efficient executive assistance in the known universe (all before lunchtime), we also need to sort through the constant stream of information, picking out the trash, and staying on heightened alert. Even though we would probably really like some of those pseudo-science promises to work…even just a little bit. 

As I was writing this today, my email pinged and there waiting for me was some ‘research’ (a term here used to mean ‘made up stuff’) suggesting that my diabetes could be cured by taking a daily supplement in a convenient, once-a-day tablet. But wait! There’s more. I could take advantage of the cyber-Monday special and get an extra 23% (random number) discount, if I locked in a twelve-month subscription contract. For the record, even with the discount, I’d be out of pocket for this scam product USD$647 per year. Each ‘film-coated’ tablet contains, cinnamomum cassia, garcinia gummi-gutta, chromium hexahydrate, zinc citrate, glutamine, gymnema sylvestre and citrus extract. 

I hit the unsubscribe button, blocked the sender. And instead of ordering that veritable shit salad of ingredients, decided that a better way to ingest citrus extract would be to make some lemon bars, and cinnamon via an apple cake. The rest of the stuff sounds made up and absolutely not likely to make my beta cells start making insulin again. 

And so, I donated some of the USD$647 I just saved my not getting swept up in this scam to Insulin for Life. Because you know what? The stuff IFL is giving to people with diabetes in under-resourced countries is something that really works and is really essential. And absolutely, completely and utterly not a scam.

Click to donate

You owe no one.

You owe no one involvement in diabetes awareness activities.

You owe no one Twitter fury and outrage when diabetes is misrepresented.

You owe no one a decision to jump on a bandwagon just because everyone else is. 

You owe no one your loud voice, your quiet voice, your whispered voice.

You own no one involvement in their diabetes advocacy efforts.

You owe no one blue eye shadow, blue nail polish or blue hairspray.

You owe no one reminders that diabetes doesn’t stop you.

You owe no one explanations for how you choose to advocate or the causes you choose to support.

You owe no one for the type of advocate you are. 

You owe no one reasons for who you decide to work with; and who you decide not to work with. 

You owe no one. 

You owe no one hope. 

You owe no one justifications for the technology you choose, or don’t choose. 

You owe no one a podium.

You owe no one details for why you are at a conference, a dinner, a meeting, talking diabetes.  

You owe no one the right to uses your diabetes as a teaching moment. 

You owe no one marathons or mountain climbs or channel swims in defiance of diabetes.

You owe no one your time to just read their blog post, join their support group, sign their petition.

You owe no one a cheer squad.

You owe no one the words and language you choose to use to help make sense of your diabetes.

You owe no one an insight into your diabetes management, your HbA1c, your CGM curve.

You owe no one.

Except. 

Maybe…

You owe yourself love and kindness and reminders that on days when diabetes feels too hard, too big, too sad, too … everything … that doing what you can is enough. You owe yourself room to breathe. You owe yourself space to step back and space to step up. You owe yourself pats on the back and high fives. You owe yourself flowers. You owe yourself the freedom to do diabetes your way and in your own time. 

You owe yourself. And no one – no one – else. 

Over the course of this year, I have been involved in a number of diabetes-related initiatives and events organised by the World Health Organisation. I remember the first email I received inviting me to be involved in an event because I was impressed with the communication about diabetes. There was a clear commitment to centring the lived experience, and it seemed that whoever was coordinating the project had an excellent understanding of the condition. I wasn’t sure if anyone involved was living with diabetes themselves, but I was certain they were working with people with diabetes to help shape the messaging. The most recent event, just last week, was coordinated by someone in the diabetes community – someone I’ve met in person and interacted with online for some time, and someone who is an excellent communicator with an in depth understanding of the global diabetes stage. 

And so, you would think that with all this diabetes intel and track record of great engagement that I would be surprised when the WHO made a spectacular blunder on Twitter yesterday with its efforts for World Diabetes Day. 

Except, I wasn’t surprised. At all. Because I know exactly how it happens. It’s the very definition of the left hand not knowing what the right hand is doing, and it’s all too common when comms teams don’t work with the teams focusing on lived experience. 

September marked twenty years I’ve worked in diabetes organisations in Australia. On top of that, I’ve been involved with the IDF for the last decade, as well as other diabetes organisations and companies around the globe. And in that time, I’ve seen some absolute clangers – clangers of which I first became aware once someone had hit share, and people with diabetes were, quite rightly, baying for blood. I’m not going to mention any, but I can tell you that I am still in therapy for a campaign that involved clowns, sharks, and spiders. Sigh.

It’s a horrible feeling when the community fury starts, and it’s directed at something you feel you should have been ahead of it or stopped it from happening in the first place. 

It’s also horrible to be put in a position of seeing this happen and not knowing what to do about it, or rather feel that whatever you do, it’s going to cause trouble. At the IDF Congress two years ago, sitting on stage in a panel with the newly minted IDF President, I was put in that position. After the President used a stigmatising image in his presentation, I had two options: sit there and say nothing or call it out. Option A would have resulted in people with diabetes not understanding how I could let it go. Option B could have resulted in furious IDF powers that be and me never working with them again. 

Option B was the only thing I could do. I knew that. But I cannot tell you the fear I felt as I spoke out on that stage, or afterwards. I barely slept that night, terrified at what was going to happen. Before the sun was up the following morning, I sent my boss, the CEO of Diabetes Australia, a message asking for an early breakfast meeting, linking him to a tweet with video of what had happened the evening before. In the back of a cab through the still-dark streets of Busan, I was so worried that I was going to be told that I handled it the wrong way and that I shouldn’t have said anything publicly. But that’s not how he responded. 

By that evening, I’d spoken with the IDF President, as had a few others, and together, we planned to pen an article about the how language can stigmatise diabetes. It was published the following year in The Lancet, and you can read it here

Last year, I stuck my head about the parapet when a state-based diabetes organisation in Australia (one for which I worked for 14 years) got things wrong when they were putting together an event with last year’s Australia of the Year (who has, I’m sad to say, been very stigmatising about type 2 diabetes since he stepped onto the diabetes stage). It was uncomfortable for me to write about the disappointment I’d felt seeing the language being used in promotion for the event, but I found myself in the same situation as I’d been at the IDF Congress the year before. I knew I had to say something. Because staying silent isn’t an option, no matter how uncomfortable it might be. 

I look at the way the comms team at Diabetes Australia operates now and the incorporation and focus on lived experience means that we run campaigns like this year’s stigma campaign and last year’s diabetes burnout campaigns. (And yes, I am completely biased because I work at Diabetes Australia, but this integration is something that means our messaging is far more hit than miss.)

Perhaps the thing that organisations need to reflect upon when something like this happens is just how easy it is to avoid doing it again. Despite yesterday’s clumsy efforts, WHO is already a long way there to doing better next time. It really is simple – work with community advocates, because there are always people who are keen and willing to be involved (hand raised!). And identify the people in the organisation who can help shape messaging and get it right. The WHO has those people there already meaning that it can happen straight away. (And for organisations that don’t, employ those people now.)

Over the last two days (or last two middles of the night if you’re perpetually in the wrong part of the world as it seems I am), I participated in the excellent first World Health Organisation Global Diabetes Compact Forum. (You can read the Compact which was launched earlier this year here.)

Once again, the WHO team had brought together stakeholders, including diabetes advocates, from across the world to talk about some critically important challenges facing people living with diabetes. These included access to insulin, research and innovation and prevention, health promotion and health literacy. The Forum was definitely not a ‘sit and be lectured to’ event. It was interactive, with everyone having the opportunity to participate and share their experiences and perspectives. The chat function was open and there was a constant stream of engaging, energetic discussion and sharing. 

The final session was about prevention and in his introduction, James Elliot, who expertly moderated the event, laid the foundation for the discussion. As with the previous sessions, there were no pre-conceived ideas or narrow focus about the topic. 

Prevention isn’t just about prevention of type 2 diabetes. There is a lot of work also going on looking at prevention of type 1 diabetes. And also, once living with diabetes, looking to do what we can to prevent diabetes-related complications.

When I spoke, the first thing I wanted to highlight was the problem I feel with the word prevention, and I revisited previous discussions in which I’ve been involved which highlight the struggle I feel with the word prevention. For too many people it is a word that offers a promise – a promise which guarantees that we can prevent aspects of diabetes that are often well beyond our control. I presented my case for instead focusing on how reducing risk is a far more accurate description of what efforts are truly about, a perspective that I have noticed is being used more and more.

The discussion pivoted to being about complications and associated stigma. Thankfully, this is not the start of the conversation about diabetes-related complications and the way people see them. When I wrote this piece back in 2013, I wrote about the way complications were presented to people with diabetes and how non-modifiable factors such as genetics, are rarely part of the conversation. There seemed to be a very one-dimensional presentation of diabetes-related complications: ‘take care’ of yourself, and you won’t get them. 

With communication around complications starting to be included in the language matters movement, I could see that too many people had been told that over-simplistic tale. 

It all got taken up a very significant notch when there was a concerted effort in the DOC to encourage dialogue about diabetes-related complications in a non-judgemental and safe way. Suddenly, we were seeing the hashtag #TalkAboutComplications accompany people’s stories, or questions others might have. This led to a real shift, as more and more people shared their experiences, with many saying that it was the first time they had seen others being so open about what was often considered a taboo topic. Starting to peel away the shame and secrecy of what can be a scary part of life with diabetes allowed many people to seek support from peers and help from health professionals. 

The legacy of the #TalkAboutComplications idea is that is that there are far more conversations today about diabetes-related complications. There is also a plethora of blog posts, podcasts, journal articles and conference presentations about the topic. I know that there is still significant stigma that we need to chip away at, but actually being able to easily find places online where conversations about complications are normalised and being part of those conversations is contributing to reducing that stigma. 

The session at the Global Diabetes Compact Forum was terrific because it tied together diabetes-related complications and stigma. With the theme of access this World Diabetes Day, perhaps we need to think about what that means when it comes to diabetes-related complications. While we absolutely do need to think about all factors at play when it comes to the development of complications, we also need to acknowledge that access is a factor when it comes to outcomes. Access to the right information, including information about risk reduction, access to insulin, access to glucose monitoring devices, access to complications screening, access to early diagnosis and treatment, access to peer support, access to stigma-free treatment, access to mental health support…all these have the very real potential to influence outcomes. 

It’s been a while since my last diabetes in the wild encounter. It makes sense. I’ve barely left my house for the last 20 months and I’ve not really been frequenting the places where I would usually have those happenstance meetings – cafés and airports. Gosh, remember airports? Remember the queuing and the waiting and the frustrations and the delays and the cancellations? Anyway, I digress…

It shouldn’t surprise me that it was a café that provided the setting for my accidental encounter with another person with diabetes. I was working away, happy to not be in my house, even happier that someone kept bringing me outstanding caffeine. Happiest because I knew that every single other person sitting there was fully vaccinated. 

I was doing the sort of work I do best in a café – editing. I get into a zone, concentrate on the task, and just read and edit in a super-efficient and fixated way. I don’t get distracted by anyone around me, and the noise becomes a reassuring beat that I work to. I completely block out anything on around me. 

Including the fall rate alert on my Dexcom app. Anyone who uses Dexcom knows that this is a particularly urgent, loud and unforgiving wail. It cuts through absolutely everything. I absentmindedly nodded in the general direction of my phone when I heard it, but didn’t make a move as I was totally focused on rewriting a particularly sticky sentence. (Probably like every bloody sentence in this post…) 

And so, I didn’t notice a woman sitting nearby get up from her chair and walk in my direction. I didn’t notice her stop right at my table. In fact, it wasn’t until she cleared her throat and said ‘Excuse me’ that I looked up, realising there was someone right there. She was fixing her mask behind their ears at the moment I looked up at her, my eyes focusing away from my MacBook. I blinked a few times and smiled, and then reached for my own mask before realising it was already on my face. I exaggerated my smile, so I was smiling with my eyes. 

There was a slightly awkward moment as I waited, because, look, I’ve forgotten how to engage with people. I probably should have said ‘hi’, but I’ve really lost the art of chatting with people. How do conversations start? So, I was thankful when she introduced herself. And then she asked, ‘Are you okay? I heard your Dexcom a couple of times. I just wanted to check you are okay.’

And that was how I broke my streak of having conversations about diabetes with other people with diabetes I’ve never met before. 

Turns out, I’ve missed it. Really, missed it.

We spoke for a while, sharing the usual things, comparing notes about which HCPs we see, and talking about which tech we are using. She is about to start looping, so I answered a heap of questions, remembering that I need to not be too evangelical and gushy about it. I toned down my ‘It’s the best thing I’ve ever done for my diabetes’ (because it is) by adding ‘But, of course it’s a learning curve and can be tricky.’

We told self-deprecating stories about how crappy our attitudes to diabetes have been at different periods. We shared our Covid-19 vaccination stories and compared when we’d be getting boosters. And we spoke about how we felt every time diabetes was mentioned in connection to Covid-19. 

Through it all my Dexcom kept squealing and I ignored it because I just wanted to slurp up a diabetes conversation with someone in real life, where all we really had in common was diabetes. It felt like a therapy session, a confession, and catching up with a long-lost friend all in one fifteen-minute encounter. 

When our conversation ended, she turned to return to her seat, and I settled back, searching for the sentence I’d been working on. But before I could do that, she turned back towards me and said, ‘I read your blog. I’ve seen you here before…well, used to see you here before Covid…and I wanted to say something. It’s really lovely knowing that there is someone like me who comes here.’ 

And then I cried. Because I remembered just what it is to connect. How real it feels. It’s why I started this blog in the first place – because I wanted to meet others just like me. Well over ten years of writing about diabetes, twenty years of diabetes advocacy, and that feeling of connecting never gets old.

Lots more diabetes in the wild stories on this blog post from earlier this year.

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