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Tuesday last week, I woke up to find this message in my Twitter DMs. I read it and read it again. It accompanied a tweet or two to me about my blog post from the previous day.

I debated about whether or not I should share this publicly. I wrote some words, walked away, came back to them, walked away, asked a few friends their thoughts, walked away, wrote a bit more and walked away again. I posted it to my closed Facebook page to get some feedback from others and wondered if that was enough.

But then remembered this blog post. #StandUP.

So, here I am, standing up. Because I am upset and angry.

I am not upset and angry that someone didn’t like or disagreed with what I wrote. It would be frightfully boring if we always all agreed with each other and loved the same things.

I am not upset and angry that this message was unsolicited. I believe that people don’t need an invitation to comment when I write and publish things on a public forum. I invite all feedback – good and not so good.

I’m not even upset or angry that I don’t understand what was being referred to in the message. I re-read and re-read and re-read my post, and I can’t see where I ever, ever said that people with diabetes shouldn’t self-manage, or know what meds they’re taking or what their glucose readings are. I couldn’t find it in there. But, people interpret things differently and perhaps my writing wasn’t as clear to them as I thought it was.

I’m not here today to defend the content in that blog post, because that’s not what this is about.

I am upset and angry that I was being told to ‘be mindful of what and how I verbalise’. This is called tone policing. It is telling me that I should moderate the way that I talk and think about my own diabetes. This was an opinion piece. My opinion. People don’t need to agree with it – and they can tell me they don’t. But telling me to moderate the way that I communicate is a very different thing.

I will forever call out and stand up to anyone who tells me, or others with diabetes, to restrain our feelings or opinions, and that is why I am writing this post. Because more than anything, I believe that we have a right to express how we feel about diabetes, in the way we want to, especially when we are sharing our own opinions or experiences. When we are told to be mindful of what and how we are writing/speaking it is a step on the way to censoring and silencing us. We already do that enough.

Often, in clinical settings, we moderate the way we speak. We might minimise how tough things are, or don’t speak out about the way we are treated or the judgement we face. When we are told that we’re not doing enough and are failing, we look down, afraid to stand up for ourselves.

And so, we created spaces where we could be free to share and rant and cry in a way that gave us some comfort. We turned to others who are likely to have had similar – if not identical – experiences. We share our opinions, some of them unpopular, thought-provoking and challenging of the status quo because we feel we have the liberty to do just that.

We have had to be quiet for too long. But that should never be the case in our own space.

The diabetes online community is that space. Twitter, when we use our #xxDOC (or #DSMA) hashtags is that space. Other online and offline support opportunities and groups we have created is that space.

And this blog (and others written by PWD) is that space.

So, back to the message I received last week. I did ask for clarification, and for examples of where I’d used capital letters or words that could be considered harmful, but I didn’t get a response.

Just this message:

No answers, just a threat to mute me. To silence my voice. Sure, it is only being silenced on this one person’s twitter stream, but that was the response to me refusing to be ‘compliant’ and agree with a healthcare professional’s demands that I tone down the way I write about my own opinion. I had not been aggressive, abusive or rude. I had just shared my own opinion and thoughts in my own voice. In my own space.

In a couple of weeks, the diabetes conference juggernaut will descend on Madrid for ATTD.

This one is all about new treatments and technologies in the world of diabetes and, in its thirteenth year, looks to once again be a busy and enlightening meeting.

There is so much on the program that focuses on user-led technologies and initiatives. I think it’s fair to say that PWD have long recognised that technology in diabetes is more than just the devices we wear on our bodies. We have long used technology for support and to connect to others who help us manage the day-to-day life of diabetes, and to learn and share. DIYAPS may be about the systems, but grasping the role of online platforms and support is essential in understanding the #WeAreNotWaiting movement as a whole.

It’s great that a number of PWD already know that they will be part of ATTD this year, attending satellite events run by different device and drug companies. Some are on the program and some will be there through other opportunities and work.

The more the merrier, I say! Different voices with different experiences sharing and learning is always a great thing. And having the opportunity to meet people in real life after only seeing them online adds another dimension to our peer support networks.

For European diabetes friends yet to secure a place at ATTD, there is another possible avenue in, but you need to be quick. Launching at ATTD is the new #dedoc° voices program. Although #dedoc°has its foundations in Germany it is truly an international community, involving people from all over the world. #docday° events (always a highlight at these conferences) involve diabetes advocates from across Europe and the US, and even the odd Australian, too. It’s great to see this new initiative is helping more advocates get a seat at the diabetes conference table as active participants.

APPLY NOW

If you want to be considered for the #dedoc° voices program, you need apply, which is super simple – just go here, where you will find out all about the program and how to throw your name in the ring! Applications close on Friday, so chop chop!

Successful applicants will have their travel and accommodation costs reimbursed, and will receive full registration to the conference.

Good luck. And hope you see you there.

Disclosure

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

I am an invited speaker at ATTD 2020. Lilly Diabetes is covering my travel and part of my accommodation so I can participate in the DOCLab advisory group meeting held during ATTD.

My packing-for-travel routine is pretty relaxed. We left for New York at 8am on Boxing Day and I started packing when we got home from our five millionth family gathering at about 10pm on Xmas night.

Admittedly, my laid back attitude to diabetes-supplies packing could be because I usually spend my time travelling surrounded by other PWD who are far better organised than I could ever hope to be. I know that if I run out of insulin, pack the wrong glucose strips for the meter I’m carrying or forget a charging cable, someone will be able to help me out. (I know this because these things have all happened. More than once. Way more than once.)

Anyway, I thought that I had done a pretty damn good job of throwing everything I needed together for New York, with back up supplies and contingencies. As we headed to the airport bright and early, still full of my mother’s Xmas zippoli, I felt comfortable that diabetes was going to be a relatively easy companion on this trip.

Turned out that I got it mostly right. Just not completely!

Issue one happened when I got a transmitter low battery warning the first week we were in NY. ‘Bugger,’ I thought, remembering back to the last time I recharged my Fenix G5 transmitter*. It was while I was sitting at breakfast one morning in Boston at ISPAD. I recalled that I definitely hadn’t had the transmitter plugged in long enough for a full charge. At the time, I thought I’d charge it fully the next time I did a sensor change…and then promptly forgot.

Of course, I had forgotten to pack the very specific charger required to recharge my Fenix. And I couldn’t for the life of me remember what it was called. ‘It has two little magnetic-y things on the side. And it’s kind of shaped like this,’ I said sketching a rough picture to the people behind the counter in about fifteen electrical stores around the city.

After getting nothing more than blank stares, I went directly to the source – Facebook – and sent a message to a couple of tech friends back home (including the bloke responsible for building the device). I had a response minutes later, placed an Amazon Prime order straight away and two days later my Fenix was charging on the kitchen counter in our apartment.

I had a re-batteried travel transmitter with me that I used in the interim (with layer upon layer upon layer of waterproof tape over the top of it because I had also forgotten to pack the resin needed to finish off that little device…),  but as soon as the Fenix was fully charged, I reset it and shoved it back into the still in situ sensor. Crisis mostly averted.

And then there was the run in with Dex sensors. I’d sited a new sensor a day or two before we left and took two spares with me. I usually get three weeks out of a sensor, so thought that if lucky I wouldn’t even need to change one at all during our time away. But if I did, I would be right and have another there … and a spare just in case.

Well, best laid plans and all… the original sensor failed after less than a week. The second sensor did too, and the third sensor was actually faulty – the needle scarily poking out the end as I released it all from the packaging.

I believe the word I used at that point was ‘Fuck’. Loudly. And then turned straight back to Facebook with this:

A few NY friends reached out and shared the post, and within an hour, I had organised to meet up with someone who could help me out. Thanks a million to Stacey for connecting us, and thanks two million to Caroline who rode into Manhattan with her ridiculously beautiful baby to drop off sensors to me and have a coffee. (Off topic, but Caroline and I thought this was our first-time meeting, but we realised later that we had met for dinner one night in New York back in 2011!)

I am forever grateful for the support I receive from my peers online – and being my back up plan because I am so crap at diabetes. I do promise to try to do better when getting myself organised for travel, but I know that I am still likely to get things wrong. Diabetes is a hard task master and demands a lot. Slip ups happen.

But there is always help at hand. I was off Twitter at the time, feeling particularly vulnerable after the brutal time on there at the end of the year. Thankfully I had Facebook to turn to and a huge group of diabetes friends there to help me out. But what if that wasn’t the case? This is why our online spaces must be safe at all times, and why that power imbalance between HCPs and PWD, and how potentially harmful that can be, needs to be recognised. We need to feel safe reaching out wherever our peers are for whatever support we need. I did that and that’s why this blogpost is called ‘Peer support on the road’ rather than ‘Loopless in New York’!

Back to the important things.

* I use a rechargeable G5 transmitter with my Dexcom, built by a very clever bloke in Australia.

I wrote a post a while ago called ‘You Do You’, (and revisited and expanded on it here). It’s where I wrote about how everyone should have the freedom to do diabetes whichever way they see fit. I’m pro-choice in all aspects of life*, especially when it comes to PWD choosing their own management tools.

And I think that people with diabetes should have the choice to BE the people we need to be. And the people we are. I touched on this on my post on Monday when I spoke about how I felt intimidated online because my opinions and thoughts, and the way I addressed issues, were not everyone’s cup of tea. I felt that I was being called out for being myself. And that wasn’t okay.

No two people with diabetes are the same; no two people with diabetes will have precisely the same management ideas and preferences, and no two people with diabetes will react and respond to situations in exactly the same way.

THAT IS OKAY.

Diabetes is messy, frustrating, weird, annoying, amusing (rarely, but sometimes), scary, boring and a whole lot of other adjectives. And how we react and respond to it is our own business and no one else’s. You BE you, because you have the right to do that.

You have the right to be as loud or as quiet as you want.

You have the right to be as bitter and angry as you need to be in the moment.

You have the right to celebrate and be joyful about your diabetes.

You have the right to call out things that upset you just as much as you have the right to commend the things that make you satisfied.

You have the right to step away from groups, situations, people who upset you.

You have the right to disagree with others. Having an opposing view does not mean that you are attacking another person.

You have the right to have an opinion on what you see in the world of diabetes – even if it is happening on the other side of the world. I was incredulous when it was suggested that I shouldn’t question something happening in a healthcare system of which we are not a part. (I may not use the healthcare system in the US or the UK or Italy or anywhere other than Australia, but I am allowed to comment on what I see being done in those places.)

You have the right to be passionate and not be told that is a character flaw.

You have the right to be emotional because diabetes is real in a way that only makes sense to those of us who are living with it or have a loved one living with it. I don’t know how to take the emotion out of this, so you bet I will be emotional at times. I don’t get to clock off at the end of the work day and not think about it.

You have the right to use the words and language that works for you when talking about your own diabetes and if anyone tells you that #LanguageMatters is actually preventing PWD from doing that, tell them to fuck right off. It’s not. It never was. It never will be, and anyone who says it is has missed the point of the whole movement.

You have the right to use the word ‘fuck’ or whatever else you want to use. Profanity helps some people and we shouldn’t be told to wash out our mouths if others don’t like us using those words. (Sorry, dad.)

You have the right to be the sort of advocate you want to be. Or to not be an advocate.

You have the right to share your experiences – even the ones that don’t shine a particularly positive light on health systems or HCPs. No one – NO ONE – should silence us when we turn to our peers to seek support, or talk about what is going on in our diabetes lives.

You have the freedom to talk about your own diabetes, especially in the diabetes online community which we created for this very reason – to be able to share our experiences, learn from each other, support our peers and build each other up.

So, this? This is me being me. This is me standing up and not going quietly. This is me saying that I will be the person with diabetes I need to be, because it’s the only way I can be true to myself and true to my community.

*Except vaccinations. I don’t believe in choice there.

When the diabetes community comes together, great things happen. And one of the greatest things I’ve ever seen has been Spare A Rose, Save a Child.

Most people now know the origin story of this annual campaign. The short version is that back in 2013, a group of US diabetes advocates came together to do something for the global diabetes community. Using Valentine’s Day to signpost the campaign, the idea was simple: ‘spare’ one rose on Valentine’s Day and donate the saving to Spare A Rose, Save a Child. That one rose saving was enough to provide a month’s insulin to a child in an under-resourced country. All funds raised would go directly to the charity Life for a Child.

It’s really important to understand where Spare A Rose started, and the community aspect of the campaign. This didn’t happen for any other reason than a group of people directly affected by diabetes wanting to help others who needed it: for the community; by the community. No one took credit, no one was the face of Spare a Rose, no one raved about their involvement or contribution. It was about the whole community.

That’s where you step in. Because Spare a Rose is a community campaigned, owned by everyone who has anything to do with diabetes, anyone and everyone can get involved. And there are lots of ways you can do that.

Obviously, you can donate. (Please donate!) That’s the first and most important call to action here! And it’s easy – as easy as 1 – 2 – 3!


But also, we need to get this outside the echo chamber of the DOC.

Change your twitter and Facebook profile pics to highlight Spare A Rose and tell people why you’ve done it – and encourage them to as well. (Twibbon has a super easy way to do that here.)

The Spare A Rose site has lots of different images and messages you can share. Of course, use your social media reach, but also print some out and leave them around your office or local café.

Share, share, share! Amplifying anything and everything you see about Spare a Rose helps get the message out.  I make no apologies that my SoMe feeds will be seen as if through rose coloured glasses for the next six or so weeks. Roses are lovely. Spare roses save lives.

Last year was the campaign’s most successful ever, raising a total of USD$56,340 / AUD$79,447 (or 12 months of insulin and education for 939 young people with diabetes). We have a target this year that I’m afraid to say out loud, because it is so audacious, but if there is one thing our diabetes community does, it is come together for those who need it.

So, please, #SpareARose (or two, or a dozen) and save a child. Seems like an awfully good way to start the year.

So, this is 2020? How are you going? I returned from overseas to a country literally burning and choked in smoke; a government that is refusing to accept that climate change is real; and a news organisation making up the narrative to suit themselves (arsonists are everywhere, apparently).

Bet you didn’t expect me to get so political before midday on a Monday!

Today is my first day back at work after three weeks of holidays in New York with my family. We spent the time basically relocating our Melbourne life to New York: finding a favourite café that served decent coffee, drinking great quantities of said coffee, wandering the streets, playing with (other people’s) dogs, warming up in bookstores and catching up with friends. It was the perfect way to farewell 2019 and welcome 2020.

As I have mentioned a million times before, I don’t do resolutions. You may not know this, but I live with diabetes, and that in itself gives me enough reasons to not reach goals and targets. I don’t need to add another list of things of which to fall short.

For the last three years, I’ve chosen a word that I’ve hoped would oversee and direct my way of thinking and acting for the year. As it turns out, that was a load of rubbish. Because each time, as I searched for the word that I wanted to guide me, the one I settled on went against the very grain of who I am.

The words were pause, focus and reset – and behind them was the idea that I would respond in ways that were really out of character; words that would silence or calm my natural responses.

But that’s not me. I walk towards things (usually at pace), I’m impulsive, I’m reactive. Sure, these may not necessarily be the best traits for a mindful, calm existence, and they can be exhausting, but welcome to my life: Hi, I’m Renza.

This year, I’m ditching the word idea, and using a phrase that better suits me, and that phrase is Stand Up.

We are living in a world that does not need people to be silent. Manners are all very important, but it is very possible to have manners and be polite, but still challenge things that we see as not right. We don’t need to be told how to think, how to feel, how to respond to something that upsets us. We don’t need to tone police ourselves – or others. We don’t need to accept what we are given.

And in the diabetes space, we don’t need people to be meek and mild. We need people who are disrupters and who speak their minds and who call out the bullshit. We definitely need to make sure that the voice of PWD is the loudest in the room, and that anyone who tries, even for a second on any platform, to tell us to pipe down is called out for it.

We do not need people to go quietly, and I am somewhat horrified that I did just that at the end of last year when I was feeling intimidated and vulnerable online. If I’m honest, I don’t recognise the person who switched her Twitter to private and wrote this thread to explain it to the people who were asking why.

Being angry is okay because there is a lot to get angry about in diabetes care. Not standing up means that we accept the situation for how it is. We can do it in a way that is nice and friendly, but sometimes it takes more than that. And that is okay.

I have never cared about being popular in the DOC or being considered one of the cool kids. I have never worried about follower numbers. I searched for this community because I needed support and I needed to feel part of something amongst people who were just life me. Other people with diabetes.

When I re-read my twitter thread from before Xmas, my heart broke NOT at what had happened; but at how I felt that the only way for me to stop feeling so unsafe was to turn away from the community – MY community. It was this tweet that set my tears running again:

I thought that if I had wandered into the DOC for the first time instead of the welcoming place it was, I saw PWD being challenged, I would have run away. THAT was what broke my heart – the very idea that I would not have discovered people like Kerri, Georgie, Cherise, Melissa, Mike, Dana, Grumps, David, Manny, Jeff, Mel, Frank, Alanna, Kelly, Ashleigh, Scott, Annie, Alecia, Bastian, Daniela and so, so many others. I don’t know how I would have navigated the murky waters of life with diabetes without those people: MY people for whom diabetes actually invades our DNA and the DNA of our loved ones. People there for the right reasons – not for the accolades, not for increasing follower counts. They are community-minded, open to opposing ideas and thoughts, and don’t consider themselves superheroes.

If I had have gone quietly, I would never have learnt from them; never had the support of people who understand; never had people like that at my back when I do stand up.

So, I don’t go quietly ever again. I stand up as I always have. I accept that doing that will send me into periods of advocacy burnout; I’ll deal with that when it happens, surrounded my friends and peers who get it.

So yes, this is 2020. I’m back. It’s really nice to see you here.

Each year, as we stop, look back and take stock, the reason that we are feeling so tired becomes apparent. This year is no different for me; my work travel calendar was the most intense it has ever been, with nine long haul trips, some for only a day or two. Combined with regular domestic travel, I can truly say that I have seen the inside of airports far too much. I stopped adding up the trips I did once I passed 100 walks down airbridges to board planes because it was making me weepy.

But on top of the usual exhaustion this year, there seems to be an extra element of fatigue that goes beyond what I’ve experienced before.

But first, let’s talk highlights, because there have been many of them.

The year kicked off with Spare A Rose and whoa, did we start the year with a bang! With the true philosophy of SaR at the forefront (an initiative for the community, by the community), we not only reached our rather audacious target, we smashed it! A cheeky and opportunistic little extra push saw a smiling Grumpy Pumper unleashed to the whole world for just a moment The DOC didn’t break, but the final tally of for the campaign meant that 939 kids in under-resourced countries would be receiving insulin for a year. Amazing!

My favourite issue, #LanguageMatters, only went from strength to strength, and the publication of this piece in BMJ, followed by this podcast, was a brilliant way  to get it outside of the diabetes echo chamber. The importance of language featured on the programs of major conferences such as ADA and #IDF2019 with stellar panels speaking about why it really does matter.

My diabetes turned 21 and tied up in all the emotion of that, my pancreas’ performance review didn’t go all that well. Maybe next year? (Unlikely.)

Possibly the most exciting, heart-warming, rewarding and humbling thing I did this year was co-facilitate a workshop in Manila with some of the most dynamic, compassionate and enthusiastic young diabetes advocates I have ever met. I’m thrilled have had a chance to catch up with a couple of the people from this meeting and can see the wonderful work they are doing in more than trying circumstances.

Peer support was never far away. One of my favourite digital campaigns came from Diabetes Australia (remember – I work there so consider my bias) with our The Lowdown campaign. What a brilliant way to showcase how a digital campaign can reach and connect people from all over the world, and encourage them to safely speak about a topic that doesn’t seem to get anywhere enough coverage. I spoke about the campaign’s success in a number of places this year.

My own personal peer support experiences happened all around the globe at conferences, advisory board meetings and other opportunities to see friends and colleagues with diabetes. These moments ground me and help me make sense of what I am seeing and hearing, and are critical for keeping me balanced.

A special shout out to these two peers and dear, dear friends: Bastian and Grumps. We saw each other an inordinate number of times this year, literally all over the globe, travelling on planes, trains and automobiles for our #DiabetesOnTour. I do think we should launch a calendar of the 2020 pics. (Admittedly, we may be the only ones remotely interested in that idea.) When I talk about my diabetes tribe, it’s friends like these two. We’ve celebrated through some pretty amazing things this year, stood up to elevate the lived experience over and over, and also counselled each other through the tough bits. We’ve held post-mortems of long days, sitting in hotel foyers and bars, trying to make sense of what has happened, working out how to always improve, and plotting and planning more and more and more. I am so grateful to them for being the scaffolding holding me up when I’m away from home and feeling overwhelmed.

So, now the reason for that elevated exhaustion…

When I first wrote about advocacy burnout back in January this year, I had no idea at the time that it would set the scene for a difficult and sometimes troubling theme for the year. I get tired and overcome at times throughout the year, but 2019 was different and I’m not really sure why.

There were moments this year where I did honestly wonder how much more energy I have to stand up over and over again to a lot of what I was seeing. I don’t like using war and battle analogies in diabetes, but I did feel that I was fighting a lot of the time. Diabetes advocacy is a tough gig to begin with. Adding burnout on top of it makes it seem shattering.

Being attacked by HCPs for daring to voice my thoughts and challenge their behaviour, or getting it from certain, more confrontational parts of the diabetes community, or having industry reps tell me I don’t know what I’m talking about for daring to suggest that maybe their lame attempts to simulate diabetes in gameshow-style gimmicks at conferences could be better directed at actually engaging and listening to PWD all added up.

Or perhaps it was the repeated examples of ‘diabetes for laughs’…and realising that we are a long way away from HCPs truly being allies in our daily encounters with stigma.

Or perhaps it was feeling that we needed to justify just how important the #LanguageMatters movement, and the decade of work we’ve done really is. I can’t even begin to tell you how upsetting this little incident was.

It added up and several times I’ve felt overcome. I feel like that today. Which is disappointing because on measure, the highlights, the positives and the amazing community should overshadow the negative encounters.

And that is why I’m taking a break from Diabetogenic. I need some time away from feeling as though I want to analyse what is going on and comment on it. I have a wonderful holiday planned with my gorgeous family where we will see friends and wander wintery streets, rugged up in pompom hats. And then, will warm up once back in Australia to finish recharging my seriously diminished batteries, ready for a new year that’s already shaping up to be so, so busy.

Until then, I hope you have a wonderful holiday season, celebrating however you see fit. Thanks for popping by. And I’ll see you in 2020, clapping my hands and raring to go!

A few weeks ago, I saw this tweet:

(click to be taken to original tweet)

Clinical psychologist, Dr Rose Stewart, was giving a presentation where she highlighted that the power imbalance we experience between HCPs and PWD carries through to online spaces. (Thanks to Mark Guyers for live tweeting Rose’s talk.)

The diabetes online community (DOC) was a space created by people with diabetes for people with diabetes. It’s been around for many years. Australian-based site, Reality Check, had an active online forum back in the 1990s. Diabetes blogs led by DOC pioneers such as Kerri Sparling and Scott Johnson (and others) were around in the early 2000s. I wrote a weekly pregnancy blog for a diabetes peer site when I was expecting our kid in 2004 (which I republished a number of years later on Diabetogenic here).

Twitter chats (starting with #DSMA) followed. The chatter of the community goes where the community congregates; different groups use different forums to meet and chat. Kerri wrote this brilliant report on the history of the DOC. It’s a great read to learn from those who were instrumental in bringing together the community online.

I agree with Rose: Our community is better because it includes stakeholders from all corners of the diabetes community including HCPs and researchers. Jane Speight and the ACBRD team; Deb Greenwood, Hope Warsaw and other shining stars from the AADE; and clinicians and researchers from projects such as HypoRESOLVE contribute to DOC discussions and make them far richer and more rounded. That’s just the way it is when we hear the perspectives of all people living with, affected by, working in, and researching diabetes.

Some of the great outputs of these collaborative efforts include research projects, conference presentations and, of course, the development and production of this wonderful #LanguageMatters video.

Our community is not better when PWDs’ personal experiences or feelings are challenged, and unfortunately, that seems to be the default of some non-PWD and HCPs in the community. I’m not for a moment suggesting that PWD don’t challenge each other’s ideas and opinions. (Yes, I’ve read Bernstein. I’m just not that into him, but you do you.) But it is undeniable that there is a difference when it is PWD challenging each other as compared with when HCPs challenge us. There is power at play in the latter. And that is important to remember.

The spectrum of this is from the downright abusive (such as a doctor’s now-deleted response to this twitter thread I shared), to defensive: what I call the ‘Yes, but…’ response. In some ways, it is this particular reaction that is more difficult to deal with.

I find it really problematic when someone speaks about a horrible situation only to be challenged by HCPs. Responses such as ‘Yes, but we’re trying,’ or ‘Yes, but things are better than they used to be,’ or ‘Yes, but we’re not all like that,’ are defensive and don’t acknowledge or respect the experience being shared by the PWD.

When HPCs make these sorts of comments in response to someone sharing their less than ideal experience, it shifts the discussion from the PWD (and that experience) to broader interactions between HCPs and PWD. At its very worst, the discussion moves to how HPCs are challenged by ‘misbehaving PWD’. Live tweeting from the sex and diabetes session at the IDF Congress got messy when it skidded into commentary about how difficult ‘patients’ were and that if only they did what they were told, HCPs would have a much easier job. It was clear from the online commentary that HCPs’ agendas are more important than PWD, and sure, sex and sexual health is one of the things that isn’t addressed, but what of it? HCPs are already too busy doing other things (things, incidentally, that they have deemed important).

So, what happened? Well, in this instance at IDF2019, I shut down and stopped engaging, as did other PWDs. We shouldn’t need to argue and fight to defend what we think is important in diabetes care. And we shouldn’t be made to feel that our thoughts and feelings about diabetes need justifying. Or that we are the problem in a health system at breaking point.

The power imbalance – and yes, that is very, very real, even for bolshy advocates like me – comes to the fore when this sort of thing happens. It can feel as though we are being reprimanded or told off or tone policed for the way we are telling our own story or for daring to suggest that we have experienced troubles and distress in healthcare.

I have recently taken a couple of breaks from SoMe because of this sort of stuff. I don’t feel that I should ever need to rationalise my own experiences or how I feel as a person with diabetes. And yet, there have been numerous times where HCPs have made me feel that I do, or that my thoughts are not as valid or significant as theirs. I’m getting far better dealing with these situations. I’ve started using the unfollow and mute buttons in a way that is constructive and results in a far gentler Twitter feed!

So, back to Rose Stewart’s presentation. She is certainly right. That power imbalance does travel from the clinic environment to the online space and it can be damaging to PWD. HCPs are part of the fabric of the DOC and their contributions are important. But not ever at the expense of the comfort and safety of PWD.

P.S. No, I am not saying PWD get free rein to say and do whatever we want just because the DOC is by and for us. Basic manners don’t get thrown out the window just because it is our space. Being rude, nasty, aggressive, dismissive or impolite to anyone online is not okay. Being angry when we write about crappy situations is not being rude, and it is a perfectly understandable and acceptable response to what we have all faced at one time of another living with diabetes. (And that’s got nothing to do with #LanguageMatters – that’s just basic courtesy that we should all know and understand!)

Busan is a very different city today than it was last week. There won’t be warmly dressed people hurrying into BEXCO with IDF2019 lanyards around their necks, eager to learn about diabetes. The word ‘diabetes’ won’t be uttered in almost every language of the globe. There won’t be Melbourne diabetes people loudly lamenting that Starbucks seems to be the coffee of choice in the city.

And you won’t see groups of people from all around the world standing together talking about what it’s like to live with diabetes. Most of us have gone home to our respective corners of the world, back to our families, back to our jobs, back to our real lives. But we will always have Busan and the incredible week of the IDF Congress.

By the time I arrived in Busan on Monday, the IDF was already a different beast. There was a new President and Board in place and some of the concerns that we’d had about the handover had melted away to nothing. This paved the way for what we really there for: a week of learning, networking, hearing different perspectives and truly uniting for diabetes.

We did that.

Was it a perfect conference? Of course not; they never are. There were hiccoughs and AV fun. There were controversies that played out online very differently to the way they actually happened in real life. There were sessions – critically important and brilliant sessions from all streams– with disappointing turnouts.

But these are all minor concerns that are the reality of every conference I have ever attended. There will be a time for post-mortems and evaluations and planning for improvements to future conferences. That time, however, is not now. Now is the time to celebrate.

IDF 2019 was a brilliant showcase of diabetes from around the globe. As expected, I only attended sessions from the Living with Diabetes stream and every single story was beautifully presented, and enhanced by the professional expertise of the HCPs who shared the stage. Amongst the incredible tales were moments of discomfort. It’s challenging to hear of the struggles many of my sisters and brothers with diabetes face in their day to day lives. I was forced to confront my privilege in a way that demands more than just acknowledging it there.

Also, difficult to accept is realising that sometimes the chasm between what people living with diabetes want and need and what HCPs and researchers think we want is gulf-like. For every HCP who ‘gets us’ and understands the value of lived experience in the healthcare space dialogue, there are many others who just don’t accept it, and, despairingly, don’t want to listen.

But more on that another day. Because for now, I’m focused on the people who did such a stellar job. So here are just some of them!

Two hours after touching down in Busan, and we kicked off the sixth Ascensia Social Media Summit with these gems.

Bright and early on day 1 of IDF2019, and the auditorium was packed to hear about diabetes and tech.

Always, ALWAYS, pleased to share the stage with Jane. Here we are just before the panel session.

Georgie excited to TALK ABOUT HYPOS! (We couldn’t understand why there was an explanation mark at the end of that sentence.)

Manny Hernandez gave the LWD Stream Award Lecture and there is no one more qualified to talk about the importance of diabetes community. How honoured I was to introduce him!

Celebrating Manny! (Photo courtesy of Boudewijn Bertsch)

From Melbourne to Busan. Neighbours at IDF2019. Jo was speaking about living with a rare type of diabetes and Andy was there for support (and photos from rooftops).

This woman! Sana, deputy lead of the LWD Stream and a bright, fierce force.

Anita eloquently explaining the challenges of living with diabetes-related complications in Indonesia.

Apoorva highlighting #LanguageMatters in her talk.

Some of the most dynamic young people I have ever met at the Young Leaders in Diabetes Training Summit.

Cherise can always be relied upon to ask thoughtful questions.

I’ve lost count of the cities we’ve done our #DiabetesOnTour this year, but these blokes have made all my travel so much better! Thanks Bastian and Grumps.

My favourite people at IDF2019? The two baristas running this uber-hipster coffee van.

We were all surprised to see the room packed full at 8.30am on the last day of the Congress. Sex sells. Or people just want to talk about it…

One of the best pieces of advice I was ever give was this: surround yourself with smart women. This is the LWD stream from IDF2019. I truly was surrounded by the smartest of women! Thank you Sana, Pei Yan and Elizabeth. 

The final session in the LWD and my highlight of the whole congress was my neighbour, Sol, talking about living with MODY 3. We could not have scripted a closing remark better than his: ‘Being at this conference has made me feel part of something and with people that understand.’ Welcome to the world of diabetes peer support, Sol. You are so, so very welcome here.

 

DISCLOSURE

I was the Chair of the Living with Diabetes Stream at the IDF Congress in Busan. My flights to Busan were covered by Ascensia Global (in order for me to get to Busan in time to co-facilitate their Social Media Summit). Flights home and accommodation were covered by the IDF.

 

Happy Diabetes Awareness Month! We don’t really celebrate it in Australia, reserving our energies and efforts and enthusiasm for World Diabetes Day. I always thought it was a US thing (where it’s called National Diabetes Awareness month or #NDAM), but it seems that more and more countries around the world are celebrating, and who am I to not jump on a bandwagon? Plus, as I write this, I’m in a café in SoHo New York, so joining the NDAM party makes perfect sense to me!

The concept of awareness raising of health conditions is a really interesting one and has puzzled me a little for some time. Plus, it can be fraught with a lot of potential landmines. When it comes to the huge issue of diabetes, we get into criticisms of awareness initiatives being too niche and ‘exclusive’ (such as this one and this one) or too broad.

In my role at Diabetes Australia, we do awareness raising all the time. Our main efforts are around National Diabetes week, and perhaps the campaign of which I’m most proud is the three-year drive highlighting the importance of diagnosing diabetes early for both T1 and T2 diabetes. I like that our campaigns have calls to action – they’re not airy-fairy ‘tell the world about how hard my life is with diabetes’, but campaigns that have meat on their bones, with a strong ‘why’ behind them.

Why do I think that is important? Because I honestly don’t think that there is appetite from people outside the diabetes world to truly understand the intricacies of day-to-day diabetes. I don’t have a clue what the day of a person living with a chronic condition such as MS or Parkinson’s is like. And I don’t think it is all that necessary for people not living with diabetes to understand what it feels like when my glucose levels are 25mmol/l.

With the month all of a few hours old, social media pages are already awash in blue. The enthusiasm on day one is a powerful force. But I wonder how far outside the diabetes echo chamber that force extends. Are we reaching people who don’t know anything about diabetes? And will it compel them to find out more? Or do they scroll by and not even really clock what they have seen, because perhaps the topic is not really all that relevant?

I am sure that this blog is primarily read by people who are in some way connected to diabetes, and I would expect more skewed towards people affected by type 1 diabetes. I guess that makes sense – when I read diabetes blogs, I want to hear and read about people whose experiences mirror my own.

I would never, ever regard what I am doing as awareness raising. I’m telling my story to people whose awareness of diabetes is already incredibly heightened.

So, it surprises me when events, activities and campaigns generally consumed by people already affected by diabetes are seen as awareness raising. How aware do we need to be? If you’re at an event where the people on stage are all people with diabetes telling their life story, I think you can be pretty sure that most, if not all, of the people in the audience with you either also have diabetes, have a loved one with diabetes or are a healthcare professional working in diabetes.

Diabetes tweetchat contributors are always people affected by diabetes; webinar viewers are too. Sure, participants may learn something new, but has the cause of diabetes been elevated to new people?

I am all for events and activities that celebrate people with diabetes and give us a platform to share our stories. But I think we have to be sensible when we think of what they are actually achieving. I listen to diabetes podcasts and read diabetes blogs. I see all of this as a form of peer support – a way to connect with my tribe. It makes sense to me to use the limited time and mental bandwidth I have to enhance my own diabetes.

I think that awareness raising initiatives – whether it be awareness months or weeks or days, or smaller events – usually serve the community that they are speaking about. There is nothing wrong with that. In fact, there are huge benefits. Learning from others as they offer up wisdom of their tips and tricks for navigating the difficult, mundane or even amusing aspects of diabetes is brilliant. It can be validating (‘Oh, I’m not the only one who does <enter non-compliant behaviour>’) and it can help us remember that we don’t walk this diabetes path alone.

This is how I have come to see these sorts of social-based activities. Awareness raising – to those unaware of diabetes? Maybe not. But I still believe that any opportunity to hear the voice of people living with diabetes is a good one. And any change to connect with our tribe, to feel like something bigger than our own diabetes world, is great.

So, this November, as my socials continued to be flooded in blue, I’ll be thinking of it as diabetes connections month and am looking forward to seeing how my diabetes tribe around the globe is talking about their own diabetes. We’re already diabetes aware enough!

More than happy just raising a cup of coffee!

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