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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.

Today I’m talking menopause, because for fuck’s sake, why don’t we do that more? 

Actually, I know why. It’s because it’s considered an exclusively ‘women’s issue’ and has been the butt of jokes from male comedians and talk show hosts, and really, who gives a fuck anyway? 

This post is likely to continue being sweary, because as I’ve tried to find information on diabetes and menopause it seems that the road is similar to pretty much any other issue about diabetes and women’s health. Sure, there’s quite a bit out there about pregnancy – and you bet I take some credit for that because back in 2001 when I started working in diabetes organisations the very idea of lived experience-led information about diabetes and pregnancy was not typical at all, but we wrote a resource and it is still (in a very updated format) still available) – but it’s up there with trying to find details about women with diabetes and  sexual function and sexual health. 

I am literally counting down the days until Dr Jen Gunter’s new book, The Menopause Manifesto, makes its way to our bookshelves, because I know it is going to be an absolute wealth of no-bullshit, evidence-based, straight-talking information. Her previous book, The Vagina Bible, (known in our house as ‘The Vible’) delivered that in spades as it busted myths, is easy to read and matter of fact, and suggested just where Gwyneth Paltrow might like to shove her $300 jade eggs (spoiler: not up her, or anyone else’s vagina). I was so pleased that when she mentioned diabetes a few times in her book, the information was spot on. In fact, I think that her explanation as to why women with diabetes may experience yeast infections more commonly was one of the clearest I’ve ever read. 

Now, Jen Gunter has turned her full attention to the issue of menopause. This great piece is an excerpt from the book (due out at the end of the month and available for pre-order now), and the part that stood out for me was the bit where she said that often, menopause gets blamed for everything any time a ‘woman of a certain age’ has symptoms they take to their HCP. 

Sounds a little familiar, doesn’t it? I guess I’ll have to add ‘Sometimes it’s not menopause’ to my lexicon, right there alongside ‘Sometimes it’s not diabetes’. How easy, and convenient, it is to simply dismiss someone’s concerns simply because there is something easy (and perhaps obvious) to blame it on.

Of course, with diabetes and menopause, there is the bit I have learnt where some of the symptoms of aspects of menopause look very much like the symptoms of aspects of diabetes. Looking into patenting a game called Hypo or Hot Flush in the coming years. I think it might be popular with PWD of a certain age. The winner gets a cold compress and a jar of jellybeans. 

Here’s the thing. I’m not actually menopausal. I don’t even know that I’m necessarily peri-menopausal yet. But in the same way that I wanted to know all there was about diabetes and pregnancy before I was ready to get pregnant, I’m trying to prepare myself as much as possible for the somewhat mythical period of menopause. Forewarned is forearmed or whatever that saying is. The problem with that is that there is so little info out there that arming myself is proving a little difficult. And it appears that I am not alone in my thinking.

In much the same way as speaking about sexual health when I’ve found myself in a room with a few of my female diabetes friends (and wine), it seems that once we hit our mid-40s we start wanting to talk about menopause as well, searching out any titbits of information that may just help us know what we need to get ready for. We’re desperate for tips and tricks and a glimpse into what we have in store. And it seems that very few of us is having these conversations with our healthcare professionals. 

Lucky for me, my endo has spoken with me about it a little – after I’ve asked. She tells me that the mean age of the start of menopause is 47 years, which is smack bang my age, so I’m expecting to have some firsthand experience soon. And when it comes to sharing that experience, I am already committed to writing about it in a way that moves from the focus on loss that seems pervasive in most of what I’ve read about it – the loss of fertility, the loss of libido, the loss of vitality. #LanguageMatters in menopause too, and the idea that we are writing off those going through it when it’s possible they still have half their life ahead of them sounds a little grim. 

So, my question is, what do people with diabetes need to advance discussions around this? What do we want to know? And when and how to we want that information? Is it a matter of just starting to talk about it more in public forums? Do we routinely start asking our HCPs for information so that slowly (because everything in healthcare takes time) it is on their radar? Do we need more research? (Yes, the answer to that is a resounding yes.) Do we need a snappy hashtag? Is that hashtag #HypoOrHotFlush? (No, I think not.)

If you’d like to join the conversation, please respond to this tweet. Or to this post. Or send me a message privately. And I’ll follow up with another post in a few weeks. 

Looking for more?

Great post here by DOC legend, Anne Cooper.

Sarah Gatward has written a terrific series of her experiences of menopause on her blog here.

I want to acknowledge that not only women experience menopause. Thanks to this brilliant website, Queer/LGBTQIA+ Menopause, that I kept referencing today, which provides fantastic advice for how to speak about menopause to capture the experience of people who are not cisgender and/or not heterosexual.

Back when I first started writing and talking about diabetes language matters, it didn’t seem to be all that contentious an issue. I had been following with great interest how this discussion played out among people with diabetes, and it was super clear to me back then that there wasn’t a one size fits all approach or way of thinking. Some people were interested, some couldn’t have cared less. It was accepted that there would be different opinions and attitudes with different people. I know, how completely unexpected, because in every other way, people with diabetes are a tidy, identical, homogenous group who agree on EVERYTHING! #SarcasticFont

Many, many, many years down the track, more and more people are buying into this topic of conversation, which leads me to think that language does, in many ways, matter. To lots of folks.

Which is why it’s frustrating – and problematic – how fixated this discussion can become on specific words. That, I believe, is the problem with #LanguageMatters. 

When I think about why I became so interested in this issue, I’m really clear why it mattered to me. It wasn’t about manners. It certainly wasn’t about suggesting that people with diabetes (that’s my preferred terminology, but you do you!) be told how to speak about the health condition we own. 

To me, it never was about individual words. It was about words, broadly. It was about images used to accompany diabetes discussions. It was about attitudes. It was about behaviour. It was about addressing the image problem that diabetes (still) has. It was about changing the mindset that it’s okay to use diabetes and those of us living with it as a punchline. It was about shifting the public perception about diabetes. It was about people with diabetes not feeling ashamed to do their diabetes tasks in public. It was about elevating our health condition to the same level as other health conditions. It was about people with diabetes being respected. It was about stopping blame and shame and stigma. It was about people with diabetes deciding and directing how their own brand of diabetes would be discussed by those around them. 

It was always about communication as a whole – communicating to and about people with diabetes. 

And yet, with all that in mind, so many online discussions that I see still want to reduce this big body of work to: ‘But I want to call myself a diabetic.’ If someone said that to me, which some people certainly have, my response has been, ‘Okay, cool. You should definitely do that then!’

So why does THIS seem to be the particular tiny, infinitesimal, microscopic, miniscule part of the whole language discussion that some people keep coming back to? 

I’ve started to wonder what are their motives behind focusing on this issue? When I see someone, especially someone who’s been around for a couple of years and who everyone knows has been part of these discussions before, start with the PWD vs diabetic debate, I wonder if they’re trolling. They know it will get a response. They know it’s likely there will be disagreements. There are some super savvy people on social media out there who know that asking this question, or even just mentioning it will get a reaction – every single time – and it might even add to their follower count. I guess that some people think that’s currency. 

But really, all it seems to do is narrow and diminish the broader discussion. These days, when I am asked to give a talk on language and diabetes, I dedicate one slide and about 45 seconds at the beginning of my talk to get the diabetic / PWD issue over and done with, and then focusing on what I want people listening to the presentation to take away with them. 

I don’t know how or when the diabetes #LanguageMatters hashtag started. It wasn’t the name of the first language position statement, but it certainly has been used for a very long time, and been associated with the global movement that has its foundations very firmly rooted in the diabetes community – even before the advent of the DOC, because this discussion has been happening for long before our community moved into online spaces.  

The problem with using #LanguageMatters is that it is too often drawn into being about one tiny part of the whole big issue. But it seems that #LanguageMatters is here to stay with a whole lot of material and dialogue and debate behind it – a lot of which is making a huge difference to the way people feel about their own diabetes. So, what a shame that it so often gets minimised to something that is only one little part of it. What a shame that some people knowingly fuel the fire and the arguments that ensue by bringing up diabetic/PWD again. What a shame that this really important, really BIG issue is reduced to something quite tedious. 

Perhaps we should have gone with #CommunicationMatters to signpost that it wasn’t about specific words. Perhaps we should have gone with #AttitudesMatter to bring in how language adds to attitudes of stigma and blame Perhaps #BehavioursMatters would have addressed how body language and other behaviours can be just as important as verbal language. 

Or perhaps we should have used all of them because, really, #ItAllMatters.

You can read read more on my frustration about this issue in this post (and frequently on my Twitter feed).

Ten years ago was the first time I wrote something about some so-called celebrity making a thoughtless comment about diabetes. That’s right, that piece was written in 2011.

And yesterday, my Twitter feed was lit up with people commenting on some bloke on TV in the UK who made a stigmatising comment about diabetes, because of course that’s what people with unsophisticated senses of humour do at Easter time.

I muted a heap of terms because I couldn’t be bothered reading the replies. Why? Because I’d read them all before. I’d probably written a few of them myself.

I have nothing more to write, because I have written about this countless times. Diabetes bloggers and advocates who have been around the traps for longer than me have written about it countless times. We’ve seen it all before. We’ve said it all before. For ten years I’ve been banging on about it. Welcome to the table if you’re joining in now!

Here is what I wrote in this post, after a cafe named one of their wonderfully decadent desserts ‘diabetes’, because, haha, how funny, no one has EVER made a joke like that before:

‘But there is definitely room for a discussion about why diabetes continues to be seen as fodder for bad jokes, and mindless behaviour like this. Until we get the language about diabetes right, this will continue to happen. Again. And again. And again. That is the discussion I’m interesting in having now.’

I may be done writing critiques of B (C, D, E) – list celebrities being stigmatising jerks about diabetes. But I am not done talking about language. THAT is the issue here. For as long as diabetes is seen as an easy punchline; as long as people with diabetes are seen as an easy target; as long as diabetes is considered a lazy condition that deserves no understanding, this is going to keep on happening.

More? Oh, there’s plenty more…

The time (alleged) comedian Dave Hughes made a joke about diabetes.

The time Jame Oliver called a Coke can diabetes.

The time a cafe named a dessert diabetes.

The time the CrossFit CEO made a stigmatising comment about diabetes.

The time I wrote that #LanguageMatters is not about being nice, which coincided with Paul Hollywood referring to something as diabetes on a plate.

There are a lot of words that get thrown around the diabetes space to describe people involved in advocacy and support. These include (patient) leader, influencer, advocate, supporter… the list goes on. Some people prefer certain terms; others don’t. Some people don’t want to be labelled. 

I had no idea the word ‘advocate’ was a loaded word in some places. I sprinkle it around like glitter – because I see it as a term that typically describes people doing really great things – and not just in diabetes. 

It’s a word I’m comfortable with for myself.

It’s a word that I connected with others when I first started volunteering in diabetes – before I was working in it – because I could see that there were people with diabetes making a real difference to the lives of others with the condition. 

It’s a word that I attach to people standing up, showing up and being counted. I asked on my FB page about the word, and someone said they like it because it not only refers to the person, but also the actions they are taking (thanks for that gem, Cathy). 

But while it’s a word that I feel relaxed with, it doesn’t seem to be sit all that comfortably with other diabetes folks around the globe. (Which is, of course, fine. We can use whatever words we want to describe ourselves and what we do.)

I’m not sure if it is a cultural thing, or if it is just a preference. I’ve learnt that some languages don’t have a word that literally translates to advocate, but someone from Sweden told me she uses the English word, because it most adequately describes what she does. And in some places, people are very reluctant to use the word to describe themselves. After I asked about it, a number of people contacted me privately to say that they would like to use it for themselves, but they are worried about what others may think. Interestingly, they were all from the same part of the world. 

Last month, I was an invited speaker at an event for people with diabetes in South Africa, and I was asked to speak about how the DOC has been a source of support for me in my years with diabetes. The event was titled Diabetes Influencers Summit. Now THAT’S a word I’m NOT comfortable with! I spent the first few minutes of my talk explaining why I’m prickly about the word and how I see what I do as advocacy, not influencing, and that I consider myself an advocate, not an influencer. 

In my mind – and of course this is just my own assessment – influencers are building a brand for themselves, while advocates are more focussed on community. There is NOTHING wrong with building a brand – we all do it to a degree. But the advocates that I met and followed when I first started hanging out in the DOC were the ones that were truly all about community. They’re the ones I engage with now.

I don’t know any advocates who have made a squillion from their advocacy work. I don’t do sponsored posts here (or on any other of my socials). If I have been given product and then choose to write about it, I mention that in my wordy disclosure statements at the end of posts (and frequently throughout them as well), but I have never received money for what I have written, even though I am contacted almost daily with offers. I am a freelance writer, so I get paid to write elsewhere, but that’s my side hustle, writing is my job, and I should be paid for that. 

No one has to call themselves an advocate – because of course that’s fine! – but I am saddened when those of us who do use the word are criticised, or considered to be ‘above our station’. (Ugh – just writing that makes me feel sick. Aussies baulk at class systems.) 

Being an advocate doesn’t mean that I think I speak for others. I have never heard another diabetes advocate share their story with the message that they are representative of everyone. It also doesn’t mean that the issues that are important to me MUST be important to others – or that they’re the most important issues. I like to think that many of those issues that I’ve spent 20 years advocating for – access to healthcare, drugs and technology; PWD being recognised as experts in our care; respect from HCPs; the importance of using language that builds us up, rather than tears us down; working to diminish diabetes stigma; the philosophy of ‘Nothing About Us Without Us’; highlighting the need for more research about women’s health and diabetes – are universally acknowledged as issues that, if addressed and improved, can mean better outcomes for others with diabetes. But, these are my things and #YDA(dvocacy)MV. 

Last week, I attended the Shifting Gears Summit which was coordinated and hosted by the Consumers Health Forum of Australia*, and the word ‘patient leader’ was used a lot. I realised that I was bristling with the term leader, not necessarily because I object to it, but more because I know how others would react if we started using it widely. I wonder why I feel that way. I happily and easily acknowledge many diabetes (and other health condition) advocates as leaders in what they do, knowing that they too may cringe with the label. 

And yet, others working in the healthcare space are considered leaders – and usually, quite rightly so. We recognise HCPs, policy makers, hospital administrators, researchers and industry representatives as leaders in what they do, however the term seems to not be quite so comfortably applied to those of us with lived experience. But surely our experience and our role should be equal when all stakeholders are engaged. Otherwise, are we just there as window dressing? When an HCP offers their opinion on a diabetes issue, it does not necessarily mirror that of all HCPs, and yet no one questions their right to share that opinion. But despite this, they will be identified as leaders in their field. Why is that not also afforded to diabetes advocates?

It is definitely worth noting that I have rarely, if ever, seen, heard or had pushback from the HCPs I’ve worked with at the term advocate, or even leader. In fact, on a number of occasions I have been horribly embarrassed with the words – the very kind words – that have been used to introduce me. I’m always very touched that they see me in that light, but I am horrified at how other people with diabetes might react to their words. Why do some people with diabetes (myself included) want to distance ourselves from these descriptors?

Is it because in most cases people who are doing the sort of work we do are unpaid volunteers? Or is it because the status of the ‘patient’ is considered below that of others working in the healthcare space? Is it because there is no formal qualification needed to become an advocate?

Whatever it is, I don’t think we do ourselves any favours, or any favours in the endeavour to ensure the lived experience voice is considered as important – if not THE most important – in discussions about diabetes. In fact, that sort of rhetoric does nothing more than keep us in our place – that of a measly patient who can do no more than share their own tales of woe. When we say, or are told, ‘You’re only telling your story’, that devalues the contribution of advocates. It’s already hard enough to be heard, but then to be told that our story doesn’t mean much is offensive and harms us. I would never think to tell another PWD that, and it saddens me that others do.

We don’t have to label ourselves in any way we don’t feel comfortable, and we can describe ourselves and what we do in diabetes how we would like. I’ll keep throwing around the word advocate, and use it to describe myself. And continue to elevate the people with diabetes in the community who I see as being advocates, too. 

*DISCLOSURE

I received a scholarship to attend the CHF Shifting Gears Summit after applying through an open submission process. Registration was paid for by CHF. I was not paid to attend.

Click to be taken to a great Twitter discussion about advocacy in the DOC

Last night, I had the honour of speaking at the World Health Organisation Informal Consultation on Diabetes, which is currently taking place as a virtual event. It’s a three night/three day (depending on where you are in the world) event that has brought together people living with diabetes from all corners of the world. 

This was a widely advertised event, and anyone could apply. The expression of interest call out was all over Twitter, Facebook and diabetes community groups. Unlike some other initiatives and programs, PWD didn’t need to be nominated by a diabetes organisation or HCP to be part of it. You just needed to fill out the application form (which didn’t take too long), and submit. Clearly a lot of people with diabetes saw it and thought it was something they wanted to be involved in! I’m not sure of the overall numbers, but there is certainly terrific representation from a number of communities. 

On my Zoom screen I could see a combination of familiar faces, faces of people I know of but have never met or engaged with, and a whole lot of new faces. Hearing their stories, and reading the discussions that are filling up the chat box are enlightening. And reassuring. Because once again I was struck by how strong, vulnerable, admirable and strong-willed others treading the diabetes path can be. There are striking similarities and glaring differences. But common threads that run through the narratives we heard And mostly? There is support and gratitude to be there and to bear witness to others sharing their stories, ask questions and learn. Not a single snipy comment or passive aggressive remark – not because we all agree or are a homogenous group. But rather because we respect and value and admire the people who have the courage to stand up and be present. 

I was invited to speak in a session about diabetes advocacy. The session’s title was ‘Strategic communication in global diabetes advocacy’, and it included Christel Marchand Arpigliano from Beyond Type 1 and Lauren Carters-White, a research fellow from the University of Edinburgh. Christel spoke about how when we tell our diabetes stories, we are translating the language PWD use – language that makes sense to us – into words that reach a broader audience. 

Lauren used some terrific examples from around the world to show the impact data and evidence can have in advocacy efforts. 

And I rounded out the session by talking about how when we bring the two together, we win the hearts and minds of the people we are trying to influence – decision makers, legislators, policy makers, educators, healthcare professionals and researchers. Because when we have the emotional pull of how diabetes impacts on daily life, combined with the evidence to show what that means, we can’t be ignored! I highlighted how working with healthcare professionals and researchers to further our messages means that our lived experience can’t be dismissed. 

I also spoke about how the power of stories is magnified when there are many voices and many different narratives. I have rarely, if ever, heard someone share their diabetes with the pronouncement that they speak for all with diabetes, or that their story is THE story. But they are all experts in their own lived experience and that certainly should be celebrated. And its power should not be underestimated. 

I think the thing I have felt most strongly in that Zoom room is the camaraderie and solidarity – again, not because we are all on the same page and all want the same things. But rather, everyone truly supporting each other and bringing others into the conversation has been an overarching quality of the meeting. No one dominates; no one is more important than anyone else; no one claims to be THE advocate. We are all advocates working together, and supporting each other for a bigger cause. 

Of course, we want, and expect, to see action come from the three days of meetings and workshops, and I have confidence that will happen. But in the meantime, to have such large group of dynamic people come together whose only agenda is community and to build each other up, rather than tear each other down, reminds me that THIS is what diabetes advocates can do and what the community is mostly about. Those snippy voices who try to minimise people who are truly trying to improve outcomes for people with diabetes aren’t present. Because what a waste of time that would be!

I may have spoken about, and given tips about how to win others’ hearts and minds in my talk, but it’s my own heart and my own mind that have been won over by my peers in this event.

(You can follow along the discussion by using the hashtag: #WHOPLWDs)

Disclosures

None. I am not being paid to attend this event, and have not received payment, honoraria or in kind donations for my presentation, and am attending in my own time. I might need a nap later today though, because the 11pm-3.30am time for Aussies on the east coast is tough going!

Every year on International Women’s Day, I write a post about the incredible women in the diabetes world doing remarkable things for the community. I’m going to link to some of them at the end of today’s post because they highlight some truly brilliant women making a difference in the lives of so many, and their stories should be told, and contributions shared. 

But today’s post isn’t about that. Today’s post is more about the way that women in diabetes often get treated. I should point out that a lot of what I’m writing about isn’t unique to diabetes. It’s seen time and time again in healthcare, and in health communities. But my space is the diabetes world, and that’s what I write about, so here goes. 

So-called ‘women’s issues’ continue to be under-represented in research. Those issues and concerns are dismissed and ignored, and women are simply told to ‘deal with it’. Sexual function can be as relevant for women as it is for men with diabetes, and yet, do a search using the words ‘sexual dysfunction and diabetes’ and you’ll need to scroll a long way into the 32,000,000 results before women are mentioned. 

I have sat on panels and been spoken over, and sat in audiences as I’ve watched women be spoken about and over. Last year, I spoke in a session at an international conference and then was the only PWD in the panel discussion at the end of the presentations and the chair (a male HCP) answered all questions directed at me. 

Conference organising committees continue to be majority male, and award lectures seem to be more frequently given by men – and white men at that.

I sat in an online conference last year and was astonished to see that the woman whose contribution to one of the most significant advancements in diabetes tech in recent years was minimised. Thankfully a number of women in the audience corrected the misconception, and then had to deal with having mansplainers tell us all the ways in which we were wrong. (Spoiler: we were not wrong.)

I have heard so many mothers (and sometimes fathers too, but usually mothers) of kids with diabetes tell stories of being dismissed when they took their kid to the GP with symptoms of diabetes. They were told that they were imagining things, and there was no need to investigate further.   

Remember the furore we saw when the IDF dared to focus women for WDD a few years ago? So many fragile egos were hurt because the challenges unique to women were centred in this ONE campaign.  

I’ve been called a girl in meetings (still, at 47 years old), and seen the same happen to other women – women who are professional, qualified, experienced and absolute leaders in their fields.

And then there are the words used to speak to and about when, because of course, I’m going to talk about language. 

I asked about this on my Facebook page the other day and these were some of the words and phrases that women who had called out shitty behaviour from men were called:

Angry. Aggressive. Hysterical. Dramatic. Attention-seeking. Pushy. Loud. Hormonal. Over-sensitive. Too much. Shrill. Strident. Opinionated

We’re told to calm down, moderate our words, and when we dare call out crap, we are gaslit and belittled, and told that we need to chill out.

How often do you see the same language used to describe men when they are calling out crap? It’s more likely they will be identified as brave, assertive, progressive …

In our own diabetes online community, it is fascinating to see how often this happens when women share experiences or lousy experiences, or simply have an opposing view. I have never believed that everyone needs to get along, but look at how comments, subtweets, even direct messages work and you will see the gendered language that is used to scorn and dismiss women. The label of the ‘angry woman’ is alive and well when a woman stands up. For extra credit, the ‘angry old woman’ tag adds some ageism to the sexism.

These words are used to minimise, dismiss and silence our voices. And it works. The number of women I know who have stepped away from support communities because of the way they have been spoken to or about is significant.

I usually like to use this day as a chance to celebrate women, because we deserve to be celebrated. Our contributions to the diabetes world are significant. The diabetes community has been fashioned by amazing women doing amazing things. 

But it has also been shaped by women being silenced, reduced and curtailed. And that also needs to be recognised.

Previous International Women’s Day posts:

2020 – Strident women

2019 – Interweb jumble – the IWD edit

2018 – The women

2017 – Hear me roar

2016 – The F word

Here’s some stuff I’ve seen in the diabetes online world that I think is pretty cool. And I also think you might like it too if you’ve missed it. 

If nothing else, this serves as a reminder that there are some super talented, smart, funny, productive, and downright awesome folks who are doing some super brilliant things and I am always happy to share that around. (I’m forever grateful when others in the DOC have shared my posts and other work. Building each other up is always a lovely thing to do!)

Vaccine in Australia (finally)

We may be a little behind the curve, but Australia’s COVID-19 vaccine rollout has finally started! Some links that might be useful to folks with diabetes:

  1.  THIS statement from Diabetes Australia (disclaimer: I work there), the Australian Diabetes Society and the Australian Diabetes Educators Association
  2. THIS piece from Diabetes Mine
  3. THIS eligibility calculator from the Australian Government which will give you an idea of when you can expect to get your jab. 

And THIS message from me (and science):

Diabetes poetry to make you laugh and cry

Kerri Sparling has just released her book of diabetes poetry. It’s called Rage Bolus and it is all shades of wonderful. It’s a gorgeous collection of words that will have you nodding, laughing (chortling) and crying, and is a must on the shelves of all folks with diabetes. 

You can get your own copy here. 

A new diabetes podcast to check out

Chelcie Rice has been around the DOC for a long time now and frequently provides thoughtful commentary on what’s going on in the diabetes world. And so, I’m thrilled to see that he has just launched a new podcast, ‘The Soul of Diabetes’. 

The launch episode can be heard here, and then you should subscribe!

Also, Chelcie shared a video of his thoughts on the recent Dexcom Superbowl advertisement and it’s definitely worth a look. 

Clare Diabetes Group meeting

More than a little honoured to have been invited to speak at the upcoming meeting of the Clare Diabetes Group in Ireland. You can register here.

Not an easy read…

Phyllisa Deroze remains one of the most incredible voices in the diabetes community. I have been lucky enough to hear her speak (she is such an engaging speaker!), and read everything she writes because I know it will get me thinking. On Valentine’s Day she wrote about her diagnosis story, which is not an easy read, but it is a very important one. 

Phyllisa’s blog is called ‘Diagnosed Not Defeated’ and I don’t think that has ever been more accurate or relevant than in this post. Read it here.

CORONADO Study

Just today DiabTribe has published this great piece breaking down the findings from the latest findings of the CORONADO Study which looks at people with diabetes hospitalised with COVID-19 in a number of centres across France. 

Read their article here (and there is a link to the full study there).

Totally not relative to anything diabetes wise, but why?

I’m just going to leave this here…

Can you see it??

Check out this advertisement from Bonds Australia for a bit of diabetes technology on show! A little representation can go a long way! (You’ll have to watch carefully…but check out the 36/37 second mark.)

Keep wearing a mask…

…because the science says they work. And share this with anyone without diabetes who is complaining about just how inconvenient it is to have to carry around a bit of fabric with them when they head out to the supermarket!

Spare a Rose final push

And finally, February is dwindling and that means that the 2021 Spare a Rose campaign is coming to its end. So far, an amazing USD$40,000 has come in from the community – that is, donations from people with diabetes and others affected by or associated with diabetes. There will also be corporate donations added to the final tally. 

If you’ve not yet donated, or even if you have and would like to donate again, there is still time to make your contribution count towards the final tally.  Every single donation makes a difference to the life of a child with diabetes. 

Donations can be made here.

Apparently, diabetes blogs are dead. At least, that’s the proclamation that seems to made every month or so. You should very much consider my bias when I say that I don’t agree with that sentiment at all. I mean, I have a shitload of content on this here site – including new and re-visited posts that for me have some relevance to my diabetes life in the moment. 

Newer and shinier platforms are here now, so surely that means it’s time to retire WordPress and Blogger. Or is it? Newer and shinier platforms are great, so I’m not here to claim that that they’re a waste of time. Podcasts and vlogs are great tools for sharing diabetes information. YouTube and Reddit are great places to learn. And then there is Tik Tok, but I am too old to be allowed to even log into that platform. (Not true, and I have loved some of what’s been shared there. It can be a brilliant storytelling and info-sharing format!)

I’m here to say that every single platform for sharing a diabetes tale has its place. And blogs are still very relevant: the long-form post is not dead. Not yet anyway. 

It is from blogs that I learnt, and continue to learn from others with diabetes. I revisit old posts I’ve read because they remain relevant today, and have many bookmarked and saved because the information shared is so spot on! I use them as research for pieces I’m writing and presentations I’m giving. I send links to old (and new) blog posts to others with diabetes when they ask questions that I know someone has answered so beautifully. And I send posts to HCPs to give them an insight into real life diabetes that they may otherwise have not understood – a glimpse into the things we are hesitant to share with them – and how our interactions with them can leave a lasting impression: both good and bad. 

Blogs are also where we hear from those who are adjacent to actually living with diabetes. Reading posts from parents of kids with diabetes and partners of loved ones gives me a perspective that I simply don’t have firsthand.

Advocacy and awareness efforts have been described and fought through blog posts. I’ve used this blog to advocate increased funding for products, research and healthcare. It helps get the message out to people, with simple calls to action so they can get involved too. And the first time I ever heard about Spare a Rose was via this post (the links in the post are not current), and from there so many in the diabetes blogosphere – myself included – jumped on the bandwagon to support this important campaign. We knew that while donating was important, getting the word out was critical too. Since 2013, dozens and dozens of posts have been shared, raising awareness about how this ‘by the community, for the community’ grassroots initiative. 

Blogs are where some of those deep and scary issues that we only whisper about or hide away are discussed. It was in blog posts that I first read about just how diabetes impacts on mental health. Experiences about diabetes-related eating disorders were shared without judgement and shame. It was through my writing about infertility and diabetes that I connected with so many other people going through the same thing. 

Diabetes blog posts – old and new – are a patchwork quilt of lived experience gold, with the common thread that no one’s diabetes story is more valuable or important, but that everyone has a story to share that is worthwhile. 

Some believe that blogs posts are just a way for people to ramble and navel gaze and seek attention. Well to them, I say please enjoy (or don’t) exhibit A – the 1100+ posts here that may be navel gazing to some, but paint a picture of my 22 years of diabetes. It’s not everyone’s experience; it’s not everyone’s cup of tea. And I’m okay with that! If you don’t like the blog format, move on. No one is forcing anyone to read a blog post. Or to get on any other format for that matter. Because, of course, your preferred diabetes info mode may vary (#YPDIMMV).

Someone said to me that reading new blog posts these days is boring because there is nothing new – it’s already been said. And you know what? That could well be true. Diabetes is boring and even though everyone’s diabetes is different, many of us write about similar situations. But actually, that’’s okay. Because for some people, it may be the first time they see or read a post about a particular topic – even if there are five million others! – or perhaps there is a different outlook in there. 

I think that people write for different reasons. I write for a creative outlet and writing provides me with a way to explore different ideas about not only my own diabetes, but the diabetes landscape. But mostly, I write to connect with others. I don’t think anything I have to say is particularly erudite or mind blowing. I don’t have any revelations that will help someone else’s diabetes make sense. My own diabetes makes no sense to me, so the chance of it making sense to someone else is very unlikely. 

I found most diabetes blogs because their writer shared them on Twitter or on Facebook. Or, others in the community shared them, which is one of the truly wonderful things about the DOC – the way some people elevate others in the community. There used to be an annual event called #DBlogWeek which was a brilliant opportunity to learn about others writing about diabetes. Diabetes Mine’s monthly blogosphere wrap up keeps me updated with some wonderful pieces. (And for German speakers, here you can find a curated collection of blog posts by Bastian from deDOC : I run posts through Google translate to understand them.) 

And so, here are some of the brilliant pieces written by PWD I’ve read in recent times. I hope that you enjoy them too.

Corinna Cornejo writes at Type 2 Musings, and is also a contributor to the Ascensia Editorial Board (disclosure: I am too and am paid for my contributions). This great piece about power imbalance in the clinic room.

One of my favourite Aussie bloggers, Frank Sita, wrote this insightful piece about taking a pump break over the festive season: 

Diabetes and pregnancy and baby blogs have always been a favourite of mine. I cannot tell you how many I read back when I was at that stage of my life! New mamma Ashley has shared this gorgeous post while (literally) awaiting the arrival of her baby girl. 

 I loved Dave Sowerby’s 2020 look back in this post.

Kerri Sparling may have retired her blog a couple of years ago, but I was so grateful for this new post on September last year while Melbourne was in the depths of lockdown. I’m sharing it here for others who are locked down at the moment. (And Kerri’s fourteen years of posts are still available at SixUntilMe.com)

Tim Street’s blogs are not for the faint hearted! They are often super technical, but non-techies (my hand is raised) will definitely get a heap out of them. His latest blog post from just a couple of days ago has me thinking about what I need to do to jiggle my basal rates a bit. 

I haven’t watched the video that accompanies this blog post from Jen Grieves, but the words expressing how she is feeling in the midst of lockdown resonated so beautifully. 

Holly Allen’s post from the end of 2020 about imposter syndrome hit a little too close to for comfort! It’s a recurring theme from some diabetes advocates (and my hand is raised for this one too!) 

This from Molly at Hugging the Cactus had me aching as I read it. I miss my diabetes mates so hard and mourn all the opportunities we’ve missed to catch up.  

And finally, I’ve not been able to stop thinking about this piece from Cherise Shockley that she wrote for diaTribe recently, and the idea of a carb glass ceiling. I realise that I have a very similar way of thinking when it comes to counting carbs and I love how she has explored the psychology behind why people may think this way. 

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