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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!)
The IDF Congress proved once again that the power of peer support should never, ever be underestimated. From spending time with the considerable number of diabetes advocates floating around the conference centre, to hearing about their work, to seeing them present their sessions, to speaking with the enthusiastic IDF Young Leaders, there were constant reminders of just how much we value and need contact with those who know diabetes.
Our peers are not only those whose beta cell production is on strike. It’s also the people who cheer and champion us. While I will always shout about how I need to be around others with diabetes – those who intrinsically ‘get it’ – my tribe also includes people affected by diabetes in other ways. Having friends and colleagues Taryn Black and Jane Speight at the Congress was wonderful because they were able to showcase the amazing work they do that champions people with diabetes. (They may not want to be friends anymore after they see this picture…)
When we asked for topic submissions for IDF2019, peer support rang out strongly as a topic for which there was much interest. This has been consistent with all the IDF Congresses I’ve attended. But we wanted to make sure we were considering it lots of different ways and at different stages of a person with diabetes’ life. What were the benefits for younger people with diabetes through their own eyes? We don’t get to hear from them all that frequently. And what about for older people who have lived with diabetes for many years, or who are newly diagnosed with diabetes? And what about people whose diabetes doesn’t neatly fit into the pigeonholes we so like to use in the diabetes landscape?
And so, the program managed to highlights these different aspects of peer support, showing that there are just as many ways we find a way to connect as there are people with diabetes!
So, here are some snapshots from different folks at the Congress to give you an understanding of just how much peer support was all around!
Lydia Parkhurst spoke about how important it was to have met other young people with diabetes as she moved from adolescent to young adulthood. She said: ‘It’s great having the support from my friends and family, but unless you have diabetes yourself, you never truly know.’
Georgie Peters looked at not only the positive aspects of peer support, but also how it may enable damaging behaviours – in this case, referencing recovery from a diabetes-related eating disorder.
Jane Speight spoke about how peer support may help reduce diabetes distress, and in my N=1 example, I can say that is certainly true.
Bastian Hauck acknowledged the input of peers in the #WeAreNotWaiting movement, explaining how the online support is the best 24 hour customer service hotline imaginable!
Cheryl Steele echoed Bastian’s comments about the DIYAPS online world in her talk that touched on support as she discussed the ages and stages of type 1 diabetes.
At the Ascensia Social Media Summit, in his opening remarks Joe from Ascensia made the point: ‘Peer support is a really important aspect of living with diabetes.’Ascensia’s commitment to this in their regular summits, as well as their online campaigns is brilliant. At this summit, there were 171 years of diabetes lived experience in the room, and a lot of camaraderie. There were a lot of buzz at this event, with people who had only known each other online suddenly becoming IRL friends.
Friend and fabulous diabetes advocate Phylissa Deroze spoke that not all peer support is right for all people. Finding space when living with type 2 diabetes can be challenging.
And peer support researcher and staunch supporter, Ed Fisher amended his well known ‘Four Key Functions of Peer Support’ by adding a fifth: ‘Being there and shared experience’. How wonderful is it that recognition of that ‘we get it’ aspect of peer support is being acknowledged by researchers?!
Off the program, it was impossible to ignore the power of that shared experience. We heard stories that resonated because they mirror our own. And then we heard those that were not anything like ours, but we wanted to learn more and understand just how they impacted our brothers and sisters with diabetes. When I heard Sana from Pakistan explaining the discrimination and stigma associated with diabetes means that women don’t tell their husbands they are living with diabetes, hiding away the day to day tasks required (if doing them at all), her advocacy efforts became even more remarkable. And when one of the young leaders echoed this story, and went on to share how she wore her pump prominently at an extended family gathering, despite warnings from her parents that it wasn’t a good idea, we couldn’t help but applaud. Feminism and diabetes activism is really tough going, and these were just two women being the change and storming the way through for others.
And, then…then there was Manny.
Manny Hernandez gave the award lecture for the Living with Diabetes Stream. When we were choosing who to acknowledge for this award, Manny stood out for his work in the diabetes community.
Manny was asked to choose his own topic for his talk, and came up with ‘The Importance of Community for People with Diabetes’. He couldn’t have chosen a better subject matter! Manny started by sharing his own story, and how it wasn’t until he met others with diabetes that he felt connected to a community. ‘I learned more in one hour with peers than in the previous four years,’ he commented. And then: ‘There are amazing endocrinologists out there but they can’t know what it’s like to live with diabetes, what the nuances of high and low blood sugar feels like, because they don’t live it.
Manny being Manny didn’t just leave it there. He wanted others to have what he had found, and so he created Tu Diabetes, followed by Es Tu Diabetes and The Diabetes Hands Foundation (DHF). For so many people with diabetes, this was a first foray into peer support. I know that it was a hugely valuable source of information and support for me. And it introduced me to people who have become very, very dear friends. (Massive shout out to Melissa Lee who was interim CEO of DHF after Manny left. I can’t even begin to explain how much I appreciate her warmth, wisdom and wit. And friendship.)
Manny’s award lecture was a love letter to and for all of us who have found that support which makes our lives with diabetes easier, better and more hopeful; for finding out tribes, loving them hard.
It’s no wonder that #PeerSupport was one of the most used hashtags at the Congress. It was recognised by speakers in different sessions as a cornerstone of diabetes management, just as important as other aspects involved in our care.
And so, I guess that this blog isn’t anytime soon going to stop or slow down extolling the benefits and value of peer support. Thanks to all those wonderful peers – friends – at #IDF2019 for making the experience such a rich and supportive one.
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.
On the first day of IDF, a star of the Diabetes Spotlight was Ella Adams. We wanted to hear about how children with diabetes are best supported, what works and what could be improved. In the past, we usually don’t hear directly from the young person themselves. But at the IDF Congress this year, the Living with Diabetes program team was committed to hearing the lived experience as much as possible. Ella’s dad, Jason, gave a brilliant overview of how he and his wife have supported Ella, but then he stepped aside and Ella told her own story. And she did it beautifully.
Ella shared stories about how best laid plans sometimes just go a little haywire. Admirably, she just gets on with things, dealing with her diabetes around whatever situation she is in. She is fiercely independent and is doing such a stellar job of working out she wants to do diabetes in a way that works for her. She has taken on more and more responsibility for her own diabetes, her parents stepping back as she has felt ready to step up.
We had two young people on the program in the Living with Diabetes stream this year and I am so proud that we stayed true to our wishes of handing the microphone as much as possible to people living with diabetes. We saw a different type of program and Ella was very much a part of that.
Jason filmed his daughter’s presentation and shared it on YouTube, and they have given me permission to share it here. So here’s Ella. What an absolute star!
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.
Who wants to get out of a warm hotel bed and wander through the freezing streets of Busan to the BEXCO conference centre on the last day of an exhausting conference to be ready for an 8.30am session on diabetes and sexual health?
As it turns out, a lot of people do (including a few people who may have been doing karaoke until just a few hours earlier).
The symposium was in three parts. I started by talking about the female perspective of diabetes, sex and sexual health, followed by Grumps (Chris Aldred) giving the male perspective. Brilliant physician and academic, Fauzia Moyeen, closed out the session by highlighting current research in this area of diabetes.
Introducing Fauzia Moyeen to the stage.
My session at the IDF Congress focused on the recurring themes I hear from women living with diabetes. These themes were evident in responses to the blog post I wrote a couple of weeks ago asking women to share their experiences, and reinforced the messages I’d received after previous posts I’d published about diabetes, women and sex.
As much as I had wanted to present a variety of different experiences, the messages I heard from women was not especially diverse! Women from countries considered more liberal and open to discussions about sex said exactly the same things as out sisters from countries where you would expect limited information about sex and sexual health.
Over and over and over again, women echoed that they had never spoken about this issue with a healthcare professional, and if they had raised it, they were told diabetes does not impact on sex.
Some of the quotes were absolutely heartbreaking. Women shared stories of how their relationships ended because sex had become so painful and uncomfortable after their diabetes diagnosis and they had not been able to get help. One woman was told ‘…get used to it because that’s how it is’, another was told the pain was not real.
The emotional impact of feeling that yet another part of our bodies is letting us down and not doing what it is meant to is never considered or discussed. We are left to flail around with these intense feelings and concerns. It’s not even a matter of being able to get help – we don’t have anyone signal to us that this could be an issue.
Then there is the mess of adding hypos, or fear of hypos into sexual activity, or trying to be intimate when we’re hyper and our bodies feel leaden and achy. There is so little that is sexy about diabetes, and that may be especially true when we are trying to be our sexiest!
And then there is the whole contemplation of how to introduce a new partner to devices stuck on bodies and scars on skin, and the worry about how that will make them see us.
Discussion after my talk was lively, with HCPs asking some great questions. One wanted to know how to bring up the topic, which is really important. Many people are not comfortable talking about sex and sexual health. Not everyone is happy to share when they are experiencing problems. Cultural considerations come into play here as well. Having a HCP of a different gender speaking about sex makes some people very uncomfortable. One HCP said that when he has raised the topic, he’s been told that it’s none of his business.
I had some suggestions about normalising discussions about sex, while remain sensitive to people with diabetes, allowing them to dictate if this is a topic for discussion.
I believe it is essential that the person with diabetes is the one who decides whether or not sex and sexual health are to be topics of discussion. Now that doesn’t mean HCPs don’t get to ask at all, leaving all responsibility to the PWD. They can provide prompts. Perhaps have some brochures in the waiting room that can be accessed by women. (Yes! There are such things and you can see them here.)
Also, list sexual health and sex as something that may be affected by diabetes in general diabetes discussions. Think about it as a complication of diabetes and address it as you would any other complication. Just mentioning it plants a seed for the PWD to understand that this may be something that needs attention.
I borrowed a suggestion I heard Sarah Le Brocq during her language and obesity talk at the DEEP Summit earlier this year. Sarah shared how one GP practise has a little form for people to fill in before they go to see the doctor. There are a list of different issues and the person can tick the topics they are comfortable having discussed in the appointment. (This, she said, is a brilliant idea for people living with obesity, because often that is the first and only thing the doctor wants to speak about, even if the reason for the appointment is a sore finger or something irrelevant to the person’s weight).
Translated for diabetes, develop a checklist with potential topics, with sex as one of them. If the box had been ticked, that would signpost to the HCP that this was a topic that the person with diabetes wanted to discuss.
Another question came from a doctor who asked how to make discussions about sex a priority when he needs to focus on diabetes-related complications. ‘If a person is dead from a heart attack, sex won’t matter,’he said.
The response from people with diabetes was the same. Consultations need to focus on the issues that matter to people with diabetes, not tick the box exercises so HCPs feel that they are getting in all the things theywant to speak about.
Yesterday, I wrote this in my post:
‘… sometimes the chasm between what people living with diabetes want and need and what HCPs and researchers think we want is gulf-like.’
I felt that keenly after my talk. Women had told me that relationships had ended because of how diabetes had impacted on their sex lives. Others said that the discomfort they felt having sex meant that they just didn’t want to, and it had become a constant source of tension between them and their partner. Other women felt that they were failing themselves and their current or potential partners. One woman said that she refused to have sex because she didn’t want anyone to see how diabetes had marked her body.
To me, these sound like issues that need to be addressed, as much as, if not more so, than trying to adjust basal rates. They are just as important as making sure someone is doing their foot checks. They are far more important than knowing a current A1c. Dismissing the importance of sex in a woman with diabetes’ life as less critical than other aspects of her diabetes care clearly is doing us no favours.
The feedback following the session was really positive and I hope that we start to see similar sessions on programs at other diabetes events. Let’s get the dialogue happening so that women can feel comfortable talking about diabetes and sex. And get the help we may need.
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.
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.
The International Diabetes Federation’s World Congress is on this week and I am en route to Busan, South Korea for a very busy few days.
Two years ago, when I was invited to chair the Living with Diabetes (LWD) stream at the Congress, I said yes without hesitating. I had been deputy Chair for the previous Congress and loved working together with Manny Hernandez who was leading the stream. I hoped that we would be able to put together a programme as strong as we saw in Abu Dhabi in 2017, as well as introducing lots of new speakers, new topics and elevating the voice of people living with diabetes. The LWD organising committee has been a dream to work with, and together with Sana Ajmal, Elizabeth Snouffer and Pei Yan Heng we have brought together a program that I am so proud of.
I would be lying if I said that the problems that have been overshadowing the IDF over the last few years hadn’t been front of mind at times. In fact, I often wondered if we would actually all be congregating in Busan. There were times I expected to wake up in the morning to an email announcing the Congress had been cancelled and that all our hard work had been for nothing.
But, here we are, just 24 hours out from the opening ceremony, and Busan is already starting to fill with diabetes healthcare professionals and researchers. And a whole lot of wonderful diabetes advocates who will be sharing their stories of living with diabetes. I can’t wait to get there and to see and hear just what they have to say on the stage at the BEXCO conference centre.
This Congress is the only international diabetes meeting that has a stream dedicated to the lived experience. We are given equal billing with other streams and the same funding to fly in speakers from around the world. I am thrilled that we have this stream, but my only regret is that there is not more integration of that PWD voice in other streams.
So, here is my hope – and plea – to anyone and everyone at the Congress: Make time to go to hear the speakers in the LWD stream. They are a reminder of why you do what you do. There will be stories of incredible hope, adversity and brilliance. There will be tears, and humour in there too, because sometimes, laughing (along with insulin) really is the best medicine.
Thanks to everyone who has made the long trek to Busan (it’s really not the most direct place to get to!), and prepared to share their story and experiences. There will be opportunities to follow along from home – the hashtag is #IDF2019, and some sessions are likely to be streamed live by those in the audience. Please do participate in the conversation from wherever you are. I’ll see you from Busan!
DISCLOSURE
I am the Chair of the Living with Diabetes Stream at the IDF Congress in Busan. My flights to Busan are 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 are covered by the IDF.
With Diabetes Awareness Month two thirds over, I was thrilled to find just what I needed engraved into the footpath outside my favourite local cafe. It’s what I’m living with and for.
My dear friends with diabetes, let’s be gentle to ourselves. Ten days to go…
Diabetogenic 