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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Disclosure

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

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

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

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

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

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

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

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

The current COVID-19 situation in Australia is not great. We seem to be on the cusp of a major outbreak, centred on a growing wave of new diagnoses out of NSW. Watching it all unfold from Victoria is somewhat triggering, and eerily familiar. The difference in 2021, of course, is that we now have vaccines to help combat the virus. Admittedly, our vaccine rollout is nothing short of a disaster, and that’s a massive problem when there is an outbreak like the one we’re facing right now. 

And so, that brings us to last night’s latest throw-shit-at-the-wall-and-hope-something-will-stick approach that seems to be the method preferred by the Australian Government. And the latest shit is a new advertisement with the aim of encouraging people to get vaccinated. For the record, it hasn’t stuck.  

I’m not going to share the ad because it is traumatising. The general gist is that it shows a woman who appears to be under forty years of age in hospital with COVID struggling to breath. She is intubated. 

It is terrifying. 

Setting aside the fact that the woman in the ad probably couldn’t have been vaccinated even if she desperately wanted one (our rollout is still being managed by age, and under 40 year olds are certainly not anywhere near at the top of the queue yet), or that, according to healthcare professionals, there is no way that she would have been left untreated if she was struggling to breathe in that way, the way this advertisement has missed the mark is outrageous for a number of reasons:

It blames the individual for not doing the right thing rather than looking at the systemic issues that have hampered the rollout, which includes precuring enough vaccines, starting the rollout late, blundering the messaging, messing up distribution … and everything in between. 

It terrifies people and is likely to not illicit a response other than fear. 

There is no consideration for people who have COVID right now. How would family of someone currently in hospital feel seeing this? How traumatising would it be?

I watched the ad – once only and with the sound down after the first 4 seconds – and felt a ginormous sense of déjà vu. A fear-based ad campaign has been the basis of diabetes campaigns for many years, despite pleas from the diabetes community to do something better, and a realisation that the general community wasn’t bothering to pay attention. 

Thankfully, in recent years here in Australia, we’ve moved away from scary ads, understanding that we can provide a hard-hitting message without using scare tactics. Diabetes Australia has absolutely nailed that in recent years, firstly with a three-year campaign raising awareness about the signs and symptoms of type 1 and type 2 diabetes. And we are now in year two of a campaign looking at the mental health aspects of diabetes. (As ever – my disclosures are important. I work at Diabetes Australia and have been involved in all these campaigns.)

Advertisements based on fear and blame don’t work. Last night, I kept seeing people online harking back to the Grim Reaper campaign that was launched in the 1980s to raise awareness of AIDS, some claiming that it was brilliant because they still recall it. I remember the TV ads. But what I know now, but didn’t know then, was that one of the major flow-on effects from this campaign was stigma directed towards gay men – added stigma, I should say. This stigma took many years to turn around. Notoriety doesn’t not equal an effective campaign. 

But jeez, it sounds familiar! 

Here we are this week talking diabetes-related stigma and how we undo it, and part of that stigma – the misunderstandings about diabetes – came from campaigns being run by diabetes organisations. While I’m thrilled that here in Australia we’re doing a better job at moving away from that (albeit with a hiccough here and there), not all people working in diabetes organisations got the memo. It was just eighteen months ago that I sat on a panel with the incoming IDF President and had to address his idea that ‘fear arousal’ was worth considering as a way to raise awareness of the seriousness of diabetes. 

No. 

Just. No. 

And so, back to the disaster of the COVID vax ad. If only instead of terrifying, there was a focus on incentivising. If only instead of putting all blame on the individual, there was a celebration of communities coming together. If only instead of finger pointing at people desperately ready to get a jab there was acknowledgement of how difficult and confusing it’s been. 

If only…

This was my response to Professor Andrew Boulton’s suggestion that we use ‘fear arousal’ in diabetes campaigns. I wasn’t having any of it. Footage from the International Diabetes Congress in Busan, December 2019. Thanks to Georgie for the video, which was first shared on in this tweet.

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

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

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

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

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

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

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

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

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

DISCLOSURE

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

As someone who spends far too much time sharing far too many things across far too many online platforms, this Hartley Lin cartoon for the New Yorker hits far too close to home. (But it made me laugh all the same.)

Click for source

I really wanted to call this piece ‘Hey, ableds, leave our kit alone’, but decided against it.

Over the weekend, two main things seemed to dominate diabetes twitter. The first was the suggestion from a nurse (in a now deleted tweet) that shoving cake frosting (more commonly called icing in my parts of the world) up the arse (more commonly called ass in other part of the world) of an unconscious person with diabetes was an excellent hypo treatment. The second was this picture:

Click to see where this originally appeared on Twitter

Let’s just say that sexually assaulting a PWD to give them glucose is not a good idea, no matter how hypo you think they are. Call an ambulance, rub some frosting (or honey etc.) on their gums, or, if they have glucagon with them, and you what to do with it, use that. Once again, just to be completely and utterly clear, decorating the arse of people with diabetes as if it’s a plain tea cake in need of some ready some embellishing and sprinkles, is not appropriate without consent. If everyone is conscious and there is consent, do whatever you will. 

With that out of the way let’s move to the second fun little incident and that photo. That’s right, it clearly refers to one of the diabetes devices that I and many others use to keep an eye on our glucose levels because the bit of our body that takes care of it broke. 

Even before this photo appeared, there has been a lot of commentary from people with diabetes (PWD) about people without diabetes (non-PWD) using any sort of glucose sensing device. I think that in coming years we’re going to only see more of it as the makers of CGMs and Flash GM start to advertise the allure of glucose tracking to a broader audience, or, as is the case with the little photo above, third party app makers jump on board. 

Because the diabetes community never has one united opinion on things, (although I’m yet to have heard from a PWD who has thought the icing-up-the-bum-for-hypo-treatment idea is a good one), some people are violently opposed to the idea of non-PWD using CGM. Others couldn’t be less fussed about it if they tried. And some actually think it’s great. There is no one way to respond, and everyone’s feelings are valid. 

I have a lot of feelings wondering why non-PWD would want to do diabetes. From hypo simulators, to wearing a pump with saline in it, and lining up to get an A1c checked for fun – I’ve seen it, and I’ve written about it. Again, no one needs to agree with my feelings, although it seems from the feedback I get, a lot of people do. 

But I have to say that the idea of CGMs as a weight loss tool was a new one for me. I understand that some people who are deep into the keto way of life use them, but my understanding of this is so they can repeatedly prove to themselves (and badger others) that eating meat causes minimal changes to glucose levels, but eating grains of rice make lines move. 

I did a bit of a deep dive into the company behind this picture, (they are not the only one that is moving to capitalise on the excitement and interest around biohacking) and all I could find was a whole lot of pseudo-science speak that just screams scam to me! It preys on the insecurities of those who are trying to find happiness in the latest and greatest wellness fad. But this time, they claim to have science on their side. 

This isn’t new. Weight loss cons from ‘teatoxes’ to fat-busting pills to miracle diets to superfood super-promises, have been around for years. There is a reason that new players come onto the market every week, and that reason is not because they work. It’s because we have diet industry worth billions, we have people – often young girls – being told their worth is tied up in the number on their scales, and we have people desperately looking for something that will work to get them to that number, and get them there quickly. 

To explain their claims, they use science-speak to suggest that there is a medical side to what they are doing. It seems that the ‘trust me, I’m a doctor’ line works well for a lot of people. As do the words around graphs, data and glucose statistics. That might work for people who haven’t spent a shedload of time around doctors talking about graphs, data and glucose stats, but those of us who do, might see this as a load of bullshit. 

This, directly from the company’s website claims that the app ‘…provides an immersive experience that shows you a continuous line graph of your glucose data; provides alerts when glucose spikes or dips out of your weight-loss range’.

Weight-loss range? I really don’t understand what that means because the only time my glucose levels have equalled weight loss is when they have been off-the-charts high. Such as before I was diagnosed with diabetes, and the time I was in DKA thanks to gastro. I doubt that the idea is to somehow send people without insulin-requiring diabetes in DKA, because that is going to take a lot more than just banging a sensor on your arm, and loading an app onto your iPhone. 

Of course, that’s not what they mean. They are suggesting that by keeping glucose levels withing a tight range (the ‘weight-loss range’), there will be no excess glucose needing to be stored as fat. 

There is limited evidence to support that measuring glucose levels on non-PWD is beneficial, so the science is shaky to say the least. But that doesn’t stop the program being presented as super science-y and evidence-based. And for a lot of people, that illusion of science means they think that the subscription cost (because there’s always a subscription cost!) is worth it. 

But let’s move away from that for a moment, let’s ignore the lack of science, the cost and the hint that this could be nothing more than a money-making scam, targeting vulnerable people, because there is more that comes into play which explains why so many in the diabetes community push back at non-PWD wearing diabetes devices. 

Continuous glucose monitors were created for people with diabetes to better manage our condition. They give us access data that helps managing our diabetes like never before. They are life changing. They are life saving. They are also only available to a small percentage of the global diabetes population. I haven’t even touched on the fact that generally, it’s only people with type 1 diabetes who have access. People with other types of diabetes are even less likely to be able to get subsidised or funded CGM, even though many of them might benefit from using them. 

The idea that CGMS are toys of privileged biohackers, and being used exclusively as a weight-loss tool does not sit well with many. It does not sit well with me. If I look at Australia, only half of people with type 1 diabetes have subsidised access to CGM. The rest of us are left to having to find about $4K per year to fund the devices that really make a difference to our lives, that some of us say we couldn’t live without.  

The weight-loss focus from this particular company is problematic when considering the higher rates of disordered eating, and insulin omission or restriction in people with diabetes for the purposes of weight loss. Some claimed that seeing CGMs heralded as being about weight loss, when they are using it as part of their eating disorder recovery was triggering. These factors all come into play within the diabetes community. 

And finally, the idea that increasing use to a far broader community will bring down the cost…? Let’s just be reasonable about that (or sceptical…) and say that’s not going to happen. If that was the case, the fact that every keto-follower worth their ketosis now regularly checks their ketones, would mean that blood keto strips would be cheap as chips. That’s not the case at all. 

The potential of medical devices being used outside of the reason they were created is likely to be explored a lot more in coming years. With (non-healthcare) tech companies moving into the space, it is not only possible, but highly likely, that glucose sensing (albeit non-invasive) will become standard on wearables, in the same way step counters have. But we’re not there yet. Right now, the best use of these devices is where the evidence points – on the arms (or bellies, or thighs, or wherever!) people with diabetes are wearing them, to assist with diabetes management, to help us with our decision-making process, and to improve our lives.

NOTE:

In this piece, I mean ALL people with ALL types of diabetes, including pre-diabetes. Basically, any condition that means an individual needs to consider glucose levels.

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).

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