How was your Diabetes Awareness Month? I celebrated by taking a step back from most online activities and burying my head in the sand. Because, as always, Your Diabetes (Awareness Month) May Vary. #YDAMMV – get it trending!

I got COVID at the beginning of November and that was the definition of Not Fun. I was lucky in a lot of ways – I managed to take my first dose of anti-virals an hour after the ‘you’re positive’ lines came up on a RAT and was able to recover at home mostly. I easily accessed care when I needed it, and, in circumstances absolutely not normal for most, had heads of diabetes, and infectious diseases, departments at city tertiary hospitals calling to check in on me and make sure I had all I needed. (I know this is a perk of the work I do, and I recognise the remarkable privilege my work offers.)

I also spent November making some big life decisions and some big life moves (We’re in New York for the next three months) and that has all been kind of…big. I have never been so grateful of my incredibly supportive family and friends and, especially diabetes friends who have been an absolute bedrock on helping me through this time. 

But here I am. It’s December. And it’s cold. December and cold are not words that generally go together for an Aussie sun-lover, but I am more than happy to be living in a city where Christmas carols suddenly make sense. Humming ‘Baby, it’s cold outside’ when the aircon is blasting, wearing a tank top, and sweating in 40°C heat is all sorts of oxymoron. This year, I’m wandering the streets in boots, a giant pompom adorning my beanie and wrapped in layers of coats and scarves, just as Mariah Carey intended. 

Next week, I’m leaving New York and travelling to Lisbon for the IDF Congress. I’m so honoured to have been invited to give an Award Lecture, as well as speak in and chair a number of other sessions. The best part of this particular conference is the Living with Diabetes Stream which is dedicated to recognising diabetes lived experience. I can’t wait to hear from diabetes advocates from all over standing on stages and bravely, authentically and honestly sharing their stories. I wish more professional conferences had this sort of focus. And I also can’t wait to meet up with diabetes friends, some of whom I’ve not seen since before COVID. The Congress will be big and there will be a lot of it shared online. Keep an eye out!

Oh, and if you haven’t managed to get your #dedoc° voices scholarship application in yet, now is the time. The deadline has been extended by a few days and you have until next week to get yours in. You’d be mad not to, because become a #dedoc° voice means joining remarkable diabetes advocates from across the world and becoming part of a network like no other. Learning from dozens and dozens of people with diabetes who are there to do nothing but build community and support each other is incredible. Come join us! (Disclosure: I am Head of Advocacy for #dedoc°.)

I’ve been rationing.

I only allow myself one story a day from Kerri’s new book, because I want to rediscover her writing little by little. I skipped over the contents page, so I would to be surprised when I worked out which stories from her Six Until Me blog made it into this new collection.

So it was with delight (and then tears) when I opened up to page 56, three stories into the section called ‘Diabetes in the Wild’ and saw my favourite ever diabetes in the wild story.

Photo of a page of  book with the chapter heading ‘PWD in the Wild’

Kerri tells this tale beautifully, and exactly as it happened. I know, because I was there. The general gist is that on one her visits to Australia, Kerri and I were sitting outside in the Melbourne sunshine enjoying a coffee. At the next table was a woman and her daughter. When she heard us talking about diabetes, she looked up and joined our conversation, hungry to hear about our diabetes lives, and sharing with us that her daughter had been recently diagnosed. It was only a short chat, but as is often the case with diabetes in the wild stories, it has stayed with me, and I thought about the woman and her daughter each time I walked by that cafe.

Reading the story again in Kerri’s new book, I remembered that day – the perfect blue sky, the frothy tops of our coffees, the way that we were talking a million words a minute as we tend to do when we are together. And I also remembered how five years later I had another chance encounter with the woman from the cafe. ‘You were both so lovely & made me feel so much better,’ she said. ‘I was so glad for your openness and the hope it gave me! I always wanted to tell you that.’

Kerri’s stories are full of the humanity of diabetes. It’s one of the reasons her blog was so popular for the 14 years she wrote it, and why her occasional posts now are so welcome and gratefully received by people in our diabetes community. Her writing is real and generous, and rereading each post is testament to why storytelling is just so damn powerful when it comes to healthcare. I may live on the opposite side of the world to Kerri, exist in an upside down time zone and have to navigate a completely different healthcare system, but there is a familiarity to every single word she writes.

If you’ve never read Kerri’s writing before, this book is the a great place to start. And if you have, the book is a brilliant collection to have on your bookshelf, to pull down every now and then, open at any random page and envelope yourself in her magical storytelling.

And so, Kerri: Congratulations on this book, my darling friend. I remember you once wrote about the friends that live inside your computer. I’m delighted that now, I have you living inside this book and on my rainbow bookshelf. You’ll be alongside the blue spine-d books of Helen Garner, David Sedaris and Jhumper Lahiri – some of my favourite writers. Which is exactly where you belong.

Front cover of the book 'Six Until Me Essays from a life with diabetes' The background is white and their is the outline of a flower in grey.
Click to purchase your own copy of Six Until Me.

This week, my socials have been flooded with a topic that rarely gets much of a look in: menopause, and in particular diabetes and menopause. 

It’s a welcome change! It was World Menopause Day on Tuesday, and with it came an avalanche of great content shining a light on this particular aspect of diabetes – something that really doesn’t get much coverage at all.

Square graphic with the words 'The Diabetes Menopause Project in black text on a pale pink background.

I shouldn’t be surprised that a lot of what I saw was people with diabetes sharing their own stories. These are the trail blazers who could see that there needed to be more awareness, more recognition, more attention to the issue and took matters into their own hands and shared their stories. (I’m looking at you Dawn Adams, you amazing woman!)

Here are just a couple of things that I’ve seen this week:

Dawn’s story at Diabetes UK about managing diabetes with menopausal hormone therapy (MHT, also known as HRT).

And Dawn again here at JDRF – UK with this gorgeous piece about how there are peer networks offering support for others going through perimenopause and menopause. 

This Twitter thread from Diabetes UK, highlighting just how they’ve listened to the diabetes community and calls for more research and information about diabetes and menopause. Their Diabetes Research Steering Groups have made the topic a research priority in coming years. That’s what I call being led by the folks you’re representing!

Twitter has joined the chat with a new account focused exclusively on diabetes and menopause with this neat bio: Peer support for those with diabetes going through the menopause – all types of diabetes, all stages of menopause – we’re in it together. You can follow Menopause Mithers here

Not diabetes specific, but worth a share, is this brilliant Instagram video from Dr Jen Gunter which looks at the origin of the word ‘menopause’ (of course I love this!). Oh, and there’s a whole chapter in her book The Menopause Manifesto about language. 

First page of chapter 2 of Jen Gunter’s The Menopause Manifesto and reads ‘The History and Languages of Menopause: From a Critical Age to the Change’. Black text on white background.
Of course I love this too!

I’ll be linking all of these to The Diabetes Menopause Project post as a one stop easy place for links about menopause and diabetes. 

If you google the words ‘diabetes public health campaign’, you will find myriad offerings from around the world. There are the good, the bad and the outright ugly. (Click on links at your own peril.) And many of these campaigns are the foundation of broader messaging about diabetes. 

Why is it so hard to get messaging about diabetes right, and how do we fix years of getting it wrong? 

The vast majority of type 2 diabetes messaging focuses on personal responsibility. It could be about losing weight, losing centimetres off your waist circumference, eating more fresh fruits and vegetables, being more active … you name it, it’s up to YOU. 

It’s not just type 2 diabetes. Messaging aimed at addressing specific diabetes-related complications for all brands of diabetes also has a strong focus on personal responsibility: get screened/talk to your HCP/don’t miss appointments/don’t bury your head in the sand/look after yourself. The implication is that all accountability lies at the hands of the person with diabetes. 

There are so many assumptions and that is one reason the messaging really hasn’t worked. There are more reasons, of course, and these are complex, multifaceted, and convoluted. You can almost understand why going with the easy ‘fix yourself’ messages are the ones that have been used. 

The thinking behind so much of what we think and do about diabetes is misguided because too often we look to apply solutions that are medical in nature when we need to be considering social solutions. In a recently published New York Times article, writer Roni Caryn Rabin suggested a need to reframe (type 2 ) diabetes ‘…as a social, economic and environmental problem, and offer[s] a series of detailed fixes, ranging from improving access to healthy food and clean water to rethinking the designs of communities, housing and transportation networks.’

Telling people to eat better without establishing if there is affordable fresh food available and affordable, and the knowledge for what to do with a box from a farmers’ market, or to walk for half an hour a day without first asking about safe and accessible walking paths, leaves out a very big part of the equation. Assuming people have those structures in place is naïve, and yet that is what is assumed time and time again. 

And telling people to not miss screening appointments lest they develop a diabetes complication is perfectly sound advice. Provided there are health professionals available, accessible, and affordable within decent timeframes. It takes only a cursory glance on Twitter to see that people with diabetes have difficulties when it comes to making those important appointments – and, for many, that’s been even worse with COVID.  

Individual responsibility goes only so far when there aren’t the social and system structures around to support individuals. And it doesn’t go anywhere when generic messaging is the only messaging employed with the expectation that everyone will respond, and act as directed. Because there’s no time for nuance in a snappy campaign message.

We see time and time again that vulnerable people are disproportionately affected when it comes to health outcomes. In diabetes, we talk about high-risk groups, but what is the point of that if there are no solutions that are targeted for specific cohorts? Plus, if the at-risk messaging is thrown into the mix of the ‘fix yourself’ messaging, it gets very murky. Are people also now meant to be personally responsible for their backgrounds, age, family history…?

Messaging doesn’t only live on the websites and socials of those creating them. There is often a PR machine behind them that does its dark PR arts magic to get the message out there beyond those confines. News outlets pick them up and run, run, run with the messaging, dumbing it down to soundbites that often focus on anything that will get cut through. And often that’s the ‘fix yourself’ messaging. 

And of course, the flow on effect of that is more blame, more shame, more stigma, more misinformation, more judgement, more discrimination. More people in the community not familiar and intimately connected with diabetes believing they’ve learnt something new, but really, they’ve probably only added more about how lacking people with diabetes are when it comes to personal responsibility. And on they go to perpetuate the myths about diabetes and personal responsibility. 

The times the messaging is right is when people with diabetes are directly involved in developing and finessing it. We can predict the ramifications of messaging gone wrong because we’ve been on the receiving end of it. There’s never not a good time to engage people with diabetes, and I’ll always, always advocate that. It’s good policy because #NothingAboutUsWithoutUs.

But in the case of developing messages about diabetes, engaging people with diabetes can reduce harm to us. And surely that should be the starting (and middle and end) point for anyone doing anything about diabetes. 

It’s World Mental Health Day and that seems as a good as any a day to speak about diabetes and mental health. Actually, every day is a good day for that, but with every health organisation’s social media manager’s attention turned to today’s health promotion day, I’m jumping on that bandwagon and adding this post to the myriad on Diabetogenic that address the very significant issue of diabetes and mental health. 

I don’t think it’s fair to say that we don’t speak about diabetes and mental health these days. We do. As is so often the case, the conversations started in the community, led by people with diabetes and then were slowly, but surely picked up by other stakeholders. Many health professionals are tuned into mental healthcare being part of diabetes care. And in recent years, diabetes organisations have followed the lead of the community by running public health campaigns aimed at raising awareness of diabetes and mental health. Thanks to peer-reviewed research, we have evidence to show that diabetes impacts mental health and that mental health impacts diabetes. 

But even if we say confidently say that diabetes mental health is on the agenda, there is still good reason to believe that more light be shed on the topic, and more attention be given to it. And to really advocate for mental health care to be seen as part and parcel of diabetes care. I really do believe that would make a huge difference. 

When we talk mental health in diabetes, there’s a lot to consider. Of course, there are the diabetes-specific things like diabetes burnout and diabetes distress. Plus, eating disorders can take on a particularly diabetes-focus with conditions such as diabulimia (which really, really needs to be listed in the Diagnostic and Statistical Manual of Mental Disorders – it’s such a difficult, under-researched, misunderstood, yet very present reality for so many people living with diabetes). 

But there are also ‘every day’ mental health conditions that are increased when someone lives with diabetes, such as depression and anxiety. Just how much of that is linked to diabetes?

And for those of us who dabble in the advocacy world, there is advocacy-related burnout to contend with too and that can and does start to impact our own diabetes management and mental health. 

I couldn’t even try to estimate the number of times I’ve given talks about diabetes and mental health from a lived experience perspective. But I am always happy to be asked, and always willing to talk about it, even if it means being quite vulnerable and exposed when I do so. 

I remember when my work in diabetes organisations started to focus more on mental health, and I also remember when those discussions were accompanied by a change in narrative. Suddenly, a lot of what we spoke about – from diabetes-related complications to risk reduction – came with a side serve of mental health commentary. It helped to show the undeniable link between the two. And the community responded to that favourably.  

Diabetes has never just been about glucose levels, or carbohydrates. And there are healthcare professionals and researchers and organisation leaders that understand that – probably because they have spent time really listening to people with diabetes, rather than just churning out the old tropes about the ticking time bomb of diabetes. Actually, those tropes have probably contributed to a lot of diabetes-related distress.

Starting conversations about diabetes and mental health can be difficult. I like to think that all HCPs these days are aware of the intersection between diabetes care and mental health care, but sadly, I don’t think that is necessarily the case. If the stories I frequently see on social media are anything to go by, there is still a way to go when it comes to having frank, open, honest discussions that recognise that the mental health of people with diabetes needs attention. 

These days, I know that my mental health is really not that great. While I know that may seem alarming, I actually see it as progress. Being able to identify that I am feeling this way means I can do something about it. In years gone by, I had no awareness about my mental state. I didn’t know what to do about it. 

When I talk about how my mental health is faring – especially when feeling as I do now – there is often surprise. I am not backwards in coming forwards and I know that many people see me as confident, assertive, and self-assured. And I am that way. I’m also pretty bubbly and positive about life in general. But with it comes some dark times and dark thoughts and dark days that are really not especially easy to manage.

I don’t know about others, but when things are dark, everything seems bigger and scarier. I had a low the other night that hit below 2.0mmol/l, and ordinarily I’d deal with it and move on. But during the hypo and since then I’ve not been able to stop thinking about it and worrying about it. It never pays to play ‘what if’ in diabetes, and yet most of my thoughts when remembering the other night have started that way. The constant crap that I’ve been dealing with in the advocacy space for far too long now feels unbearable, and seems so, so nasty that I feel a wave of anxiety just being online. The burden of simply doing diabetes feels massive. The other day, I cried when my insulin pump demanded a battery change. And I can’t shake this overwhelming feeling that I have no idea what I am doing with my own diabetes management and am so anxious about complications, even though there is no good reason for it. These are the dark feelings. The reason sleep gets disturbed. The reason that my heart beats faster.

If I could wave a wand and make one thing come true this World Mental Health Day, it would be that everyone with diabetes has access to mental health care as part of routine diabetes care. And if I could wave that wand for a second time, I’d want my own mental health to build back up and become a little more robust than it is right now. That would be really, really great. 

Square graphic with the words ‘Mental health care is diabetes healthcare’. The words are in black on a pink striped background. The word ‘diabetogenic’ is in pink on the lower right hand side.

Six weeks ago, my sister almost died. 

They are seven of the most awful and terrifying words I’ve ever typed and my heart breaks and mind wobbles just looking back at them. 

Almost died. 

She contracted bacterial meningitis, and if not for everything happening in the way and in the timeframe it needed to, I fear that the word ‘almost’ would be missing from the first sentence of this post. 

Let me tell you about my sister. She is incredible. She is smart, funny, savvy and sassy. She scares me which is bizarre because I am the older of the two of us, she is five foot (and half an inch) and is, in my mind, still fifteen years old. But the reality is that she has a ferocious presence. She is a force in meeting rooms. And in family discussions in living rooms. I’ve watched her take down real estate agents and beat them at their own game at auctions. I’ve seen her negotiate, walking away when every one of her demands has not been met, only to have whoever she was negotiating with chase her down the street, not only giving in, but throwing in a proverbial set or steak knives for her troubles. Shakespeare may have written the words ‘Though she be but little, she is fierce’ hundreds of years before my sister was alive, but those words were written in preparation for her. 

So to suddenly see her helpless, scared and incredibly vulnerable and horrifically sick was a shock. 

My sister has never been really unwell before. She doesn’t have the firsthand knowledge of navigating the health system the way I do. She doesn’t ‘speak medical’. She hates hospitals, and other than a quick stay for a tonsillectomy when she was 5, has never spent the night in one. And so, knowing that she was being taken away in an ambulance with so much uncertainty, and not being allowed to have anyone with her, was horrid. I knew she’d be terrified. COVID restrictions meant that there were no visitors in A&E, but then, when she was moved onto a ward she was put in isolation because, in addition to bacterial meningitis, she also had an unknown infection. She spent four days without anyone able to console her, hold her hand, rub her back, and tell her everything would be okay. And remind her how very much she is loved. 

She’s recovering and has come through it with some effects that she is going to have to learn to manage. She is also dealing with the trauma of it all, and piecing together in her mind exactly what happened. Watching her go through it is hard because she is second guessing herself at every step and I just want to tell her how incredible she is; how incredible her brain is, doing it all it can to repair itself and manage the trauma. But mostly, I want to tell her that more than anything I am so glad that she is here. She will start to feel like her old self, even if she is forever changed. We will laugh and giggle and be mean to each other and relentlessly make fun at our parents like we used to. She will continue to kick arse at every single thing she does. She will keep on being the best sister I’ve ever known, and a fabulously inappropriate aunt. She will just do it all now with this horrible experience in the review mirror. Right now, it’s still really close, but it will move further and further into the distance. I have promised her that. 

Six weeks ago, my sister almost died. 

I don’t know who I would be without her. I’m holding her very close at the moment. Sisters are weird. We can oscillate between loving each other and needing space within minutes. But now, I just want to fulfil my role as big sister and protect her while she heals.

Two little girls in red and white standing next to a car. The little one has her hair in pigtails and the older one has her hair in a ponytail. They are both drinking cartons of Big M (milk) through straws. There are trees behind them.

My sister read this post and consented to me sharing it. She didn’t consent to the photo, but I’ll deal with the backlash when I next see her.

C/W This post contains content about diabetes and suicide and intended self-injury. 

If you need help, this Wikipedia page has a list of mental health crisis lines around the world.  And for a list of contacts actively updated and maintained by the Wikimedia Foundation, go here. 

We talk a lot about taboo topics in diabetes.  For years, there have been concerted efforts to shine a light on many of the issues and topics that have not received enough attention but are very important to people with diabetes. Often it is people in the diabetes community who find ways to delicately begin conversations, and that is then followed by an interest from researchers and clinicians.

But there are still some topics that are often seen as just too difficult, just too fraught, just too scary. 

Suicide and intended self-injury (ISI) fall into that group. 

At EASD this year, I was invited to join a meeting for the RESCUE Collaborative Community, a project that is lifting the veil on one of the most difficult issues in diabetes mental health. The name of this project is a clue to what it is trying to achieve: RESCUE (REducing SuiCide rates amongst individUals with diabetes).

The mission of this project is:

To reduce rates of intended self-injury (ISI) and suicidal acts by people with diabetes through improved understanding of the risk factors and implementing strategies to address them.  In support of this mission, RESCUE works with stakeholders across the health spectrum including patients and care partners, academia, healthcare professionals, advocacy groups, industry, payers, federal and state agencies and regulatory bodies.

This is a big issue and a difficult one. There is a lot to think about, a lot of unknowns and a lot of questions to be asked. To work out how to help people with diabetes who are at risk, there needs to be a better informed workforce, with evidence to develop strategies that are going to help. And we also need to know how to approach the very basics when talking about suicide and ISI in relation to diabetes. 

When it comes to diabetes and mental health something comes up frequently: there is limited dialogue and understanding between diabetes HCPs and mental health HCPs. I remember hearing Georgie Peters speak at the IDF World Diabetes Congress in 2017 about living with diabulimia. She said that she would be told to ‘go home and take your insulin’ – a completely inadequate approach. In her talk, Georgie said that is the same as telling someone with anorexia to ‘go home and eat’. But when trying to navigate care from two highly specialised health areas, that sort of response is rife. 

And so, how to we make sure that when looking at diabetes and suicide and ISI, we are mindful of the specific diabetes issues that need to be considered? 

At the meeting last week, we spoke about trying to identify people with diabetes who may need attention. Contemplating how insulin may be used as a way to self-harm is one consideration, so people being admitted to hospital with frequent DKA, and people admitted for a serious hypo could be a starting point to investigate. Of course, not everyone who has DKA or a serious hypo is self-harming. Diabetes gonna diabetes and sometimes, things just happen. But it certainly does seem a good place to begin, with targeted approaches to ask questions in an appropriate way that might help identify people who need mental health support, in particular about ISI and suicide, with an aim of reducing risks. 

One of the other discussion points was asking about the role of peer support and the community when talking about suicide and diabetes? Is peer mentorship an idea? How can peers support each other? In the way that #TalkAboutComplications kickstarted meaningful community discussions about the taboo topic of diabetes-related complications and helped people with diabetes feel safe to first open up and speak about their own experiences of living with diabetes-related complications, could there be a way to signpost discussions about serious mental health conditions. And would this break down stigmas, help people realise they are not alone, and seek help, or at least ask where to seek help? Or, is this a burden too big for peer support?

There’s a lot to unpack here, and there really are no simple answers. But this work spearheaded by Professor Kath Barnard-Kelly with a team of dynamic health professionals, with input from diabetes advocates is lifting a veil to start to look for those answers. 

For more information about the RESCUE Collaborative Community, click on the image above.

MORE

#dedoc° voice, the brilliant Niki (@WhatNikiDidNext) live tweeted a symposium on suicide and ISI at EASD, and you can see her tweets here. Presenters at this session were Kath Barnard-Kelly, Marissa Town, Tadej Battelino and Simon O’Neil.

Disclosure

My travel and accommodation were covered by #dedoc°, where I am employed as Head of Advocacy. Thanks to EASD for the press pass.

I was invited to attend the RESCUE Collaborative Community meeting. I was not paid for my time to attend.

The last time I was in Stockholm was seven years ago for the 2015 EASD Conference. This year, as I walked to the conference centre from the train, everything about the venue flooded back. ‘Here we go again,’ I thought. Except this time was different.

I wrote this about #EASD2015:

‘There is much mention of the ‘patient perspective’ and on Monday there was an entire symposium dedicated to it. Unfortunately, there wasn’t an actual ‘patient’ on the panel, which surely is weird...But despite the limited presence of PWD in the official programme, there are a lot of satellite events and activities taking place.’

One of those satellite activities was the first ever #docday°. It was in a musty, overheated, overcrowded back room of a co-working cafe, and it brought together a rabble of diabetes advocates from around the world who had somehow made their way to EASD. I think most of us were there with Roche or Johnson and Johnson for one of their blogger events.

But #docday° was different. This one was completely about and by people with diabetes, showcasing community and peer support. People shared their advocacy efforts and what they were doing in their own networks to support people with diabetes, and shared ideas about how others could do the same. Despite being all about diabetes, we were not welcome as a group at the biggest diabetes conference in Europe.

Fast forward seven years to this week, and the same spirit from the first #docday° event was visible. But this time, it was on stage as part of the scientific program at the conference. The #dedoc° Symposium was on the first day of EASD and it set a tone of inclusion and collaboration, making a very clear point that people with diabetes have a rightful place here, at professional conferences.

Adding to the #dedoc° symposium were the #dedoc° voices – diabetes advocates from across the world – participating fully in the conference. This is the largest scholarship program in the world for diabetes advocates and they made sure they were seen and heard! Everywhere! You only needed to walk the corridors of the conference to see the voices collaborating, not only with each other, but with health professionals, researchers and industry. Social media coverage of the EASD is dominated by the constant stream of ‘reporting back’. And almost evert single health professional I spoke with at the conference knew about #dedoc° and supported our very clear mission of #NothingAboutUsWithoutUs. How amazing is that?!

#dedoc° is all about inclusion. That’s why we can, hand on heart, say that we welcome advocates from around the world to become a #dedoc° voice. But it’s more than that. Our events are open to everyone, including our symposia at diabetes conferences. At EASD, our session was the only one that was live streamed to everyone and anyone via our socials channels. No one needed a costly registration to get inside the Stockholsmassan or another way in. Everyone could see Andrea Limbourg speak about some incredible work from advocates in Indonesia, France and Ireland, and Jeff Hitchcock explain how Children with Diabetes managed to keep supporting families of kids with diabetes throughout COVID, and Tom Dean share details of the brilliant #DiabetesChat and how he has embraced the idea of providing a truly welcoming platform for diabetes friends from around the world to gather on Twitter Spaces for a weekly chat. And Bastian Hauck tell the story of that overheated room for the first #docday° and how what happened on that afternoon planted a seed for a global movement of people with diabetes. #dedoc° provides a platform to elevate others. It’s a privilege to be part of it. 

If you missed the #dedoc° symposium at EASD, here it is!

Disclosure

My travel and accommodation were covered by #dedoc°, where I am employed as Head of Advocacy. Thanks to EASD for the press pass.

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

Me giving Manny Hernandez a hug. We are standing on a stage with a purple background which is a giant screen. The words 'The importance of community for people with diabetes' (and Manny's name and Twitter handle @AskManny) is written in black above us. The logo for the 2019 IDF Congress is also on the screen.
Manny Hernandez gave an incredible Award Lecture at the 2019 IDF Congress.

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

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

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

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

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

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

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

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

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

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

Two drawings. On the left is a horse with one legs and a ladder leaning against it. On the right is a stick figure of a person and the word 'me'. The figure is standing on a square that has the word 'soap' written on it. It's. meant to be a soapbox.

Diabetes comes with a side serve of guilt in so many ways. Glucose levels above target? Guilty that I’m contributing to developing diabetes-related complications. Need to stop to treat a hypo? Guilty that I’m not participating fully in work, or focusing on family and friend. Forking out for diabetes paraphernalia? Guilty that the family budget is going to diabetes rather than fun stuff like (more) doughnuts from the local Italian pasticceria. Eating (more) doughnuts from the local Italian Pasticceria? Guilty that I’m not eating the way most diabetes dietitians recommend. Depositing the pile of diabetes debris on the bedside table? Guilty that I’m the reason the world is going to hell in a handbasket because of all the waste. 

The other day, I did a show and tell of diabetes tech. I brought along all the things I use, and things I don’t use. I’d been asked to show and explain just how the tech I use works and what it all looks like, but I wanted to show that there were other options as well. The people I was speaking with had a general idea of what diabetes was all about but didn’t have the detail. So, while they understood what an insulin pump was, they didn’t really understand what it means when someone says, ‘I need to change my canula’.

I did a pump line change to show the process and all the components. I didn’t need to change my sensor, so I brought along a spare and a dummy kit that is used for demo purposes. I also had some disposable and reusable pens and pen tips, blood glucose strips and a meter, alcohol wipes and batteries for the devices that need them. 

At the end of my demonstration and discussion, someone looked at all the debris. ‘That’s a lot of waste, isn’t it?’ I nodded. ‘It really is. And I think about that all the time. I hear people with diabetes lamenting just how much there is.’

‘It seems that what you use produces more waste than if you were using the reusable pens and a meter you showed us. Wouldn’t it be better for the environment if you did that?’

Yes, friend. Yes, it would. But it wouldn’t be good for me, my mental health or my diabetes. I was reminded of when our little girl was new and a man at the supermarket saw frazzled new-mum Renza covered in baby vomit and probably wearing my PJs, juggling baby and a box of Huggies and asked why I insisted on using disposable nappies rather than cloth. ‘Disposable nappies take 100 years to break down.’ In my new-mum fog, I looked at him, wondering what on earth I’d done to deserve this unsolicited approach, and said ‘Yes, I know. But if I had to deal with cloth nappies it would take me 100 seconds to break down.’ I blabbered on about other ways that we are more environmentally responsible, and then scurried away, adding environmental guilt to mother guilt and diabetes guilt

Diabetes waste is horrendous. There’s a lot of it. And we should think about it. I love the work that Weronika Burkot and Type1EU led a few years ago. You can still find details of the Reduce Diabetes Technology Waste Campaign online. The project aimed to highlight the amount of diabetes tech waste one person with diabetes produces in 3 days, 1 week, 2 week and 1 month. It was startling to see the piles of trash accumulate. 

But it can’t be solely the responsibility of the of us living with condition to address the issue. It’s brilliant that we talk about it – and we should do that. The Type1EU campaign got a lot of people thinking and talking about it for the first time. And we absolutely can and should do what we can to minimise our waste. I make sure that everything possible is recycled; I stretch out canula changes to four days when I feel it’s safe to do so; I restart sensors three or four times; I refill pump cartridges, sometimes to the point of them getting sticky; I use spent pump lines to tie the rose bushes in the garden; I’m using a fifteen year old pump – the last time I bought a new one was in 2013. I do all these things to try to reduce waste. I do what I can. I last changed my lancet one 2018. And, as an advocate, I have sat around tables with device manufacturers and begged that they consider how they can be more sustainable in their approach to diabetes tech, asking them what can be reused? What can be easily recycled? What can be removed from current packaging?

But the reality is, we don’t get a choice in how products are packaged. We don’t get to choose what the devices look like or the excess packages that surround them. We don’t get a say in the requirements of regulators who place stringent demands on manufacturers to make sure products meet safety obligations. 

Laying into people with diabetes as needing to be more responsible without looking further upstream at just who is responsible for the product we pick up from the pharmacy, or have delivered to our door, seems unfair. 

I gently pointed out to the person who was (most likely unintentionally) piling on the guilt with his comment about how I was contributing to the despair that is the condition of our environment, that his comment really was unjust and misplaced. To suggest that someone with a crappy medical condition that requires so much effort and attention, abandons the technology and treatments that go towards making it just a tiny bit less crappy is not really addressing the root problem. It can’t all be about individual responsibility. There needs to be scrutiny on everyone along the supply chain, but the least scrutiny and blame should lie at the feet of those of us with diabetes. 

Image is from this resource. I wrote and oversaw the design and photography of the first edition of this booklet years ago when working at Diabetes Victoria.
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