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Throughout ATTD I got to repeatedly tell an origin story that led us to this year’s #dedoc° symposium. I’ve told the story here before, but I’m going to again for anyone new, or anyone who is after a refresher.
It’s 2015 and EASD in Stockholm. A group of people with diabetes are crowded together in the overheated backroom of a cafe in the centre of the city. Organising and leading this catch up is Bastian Hauck who, just a few years earlier, brought people from the german-based diabetes community together online (in tweet chats) and for in person events. His idea here was that anyone with diabetes, or connected to the conference, from anywhere in the world, could pop in and share what they were up to that was benefitting their corner of the diabetes world. I’ll add that this was a slightly turbulent time in some parts of the DOC in Europe. Local online communities were feeling the effects of some bitter rifts. #docday° wasn’t about that, and it wasn’t about where you were from either. It was about providing a platform for people with diabetes to network and share and give and get support.
And that’s exactly what happened. Honestly, I can’t remember all that much of what was spoken about. I do remember diabetes advocate from Sweden, Josephine, unabashedly stripping down to her underwear to show off the latest AnnaPS designs – a range of clothing created especially to comfortably and conveniently house diabetes devices. It won’t come as a surprise to many people that I spoke about language and communication, and the work Diabetes Australia was doing in this space and how it was the diabetes community that was helping spread the word.
I also remember the cardamom buns speckled with sugar pearls, but this is not relevant to the story, and purely serving as a reminder to find a recipe and make some.
So there we were, far away from the actual conference (because most of the advocates who were there didn’t have registration badges to get in), and very separate from where the HCPs were talking about … well … talking about us.
Twelve months later EASD moved to Munich. This time, Bastian had managed to negotiate with the event organisers for a room at the conference centre. Most of the advocates who were there for other satellite events had secured registrations badges, and could easily access all spaces. Now, instead of needing to schlep across town to meet, we had a dedicated space for a couple of hours. It also means that HCPs could pop into the event in between sessions. And a few did!
This has been the model for #docday° at EASD and, more recently, ATTD as well. The meetups were held at the conference centre and each time the number of HCPs would grow. It worked! Until, of course COVID threw a spanner in all the diabetes conference works. And so, we moved online to virtual gatherings which turned out to be quite amazing as it opened up the floor to a lot of advocates who ordinarily might not be able to access the meetings in Europe.
And that brings us to this year. The first large international diabetes conference was back on – after a couple of reschedules and location changes. And with it would, of course, be the global #dedoc° community, but this time, rather than a satellite or adjacent session, it would be part of the scientific program. There on the website was the first ever #dedoc° symposium. This was (is!) HUGE! It marks a real change in how and where people with diabetes, our stories and our position is considered at what has in the past been the domain of health professionals and researchers.
When you live by the motto ‘Nothing about us without us’ this is a very comfortable place to be. Bastian and the #dedoc° team and supporters had moved the needle, and shown that people with diabetes can be incorporated into these conferences with ease. The program for the session was determined by what have been key discussions in the diabetes community for some time: access, stigma and DIY technologies. And guess what? Those very topics were also mentioned by HCPs in other sessions.
There have been well over a dozen #docday° events now. There has been conversation after conversation after conversation about how to better include people with diabetes in these sorts of events in a meaningful way. There has been community working together to make it happen. And here we are.
For the record, the room was full to overflowing. And the vast majority of the people there were not people with diabetes. Healthcare professionals and researchers made the conscious decision to walk into Hall 118 at 3pm on Wednesday 27 April to hear from the diabetes community; to learn from the diabetes community.
If you missed it, here it is! The other amazing thing about this Symposium was that, unlike all other sessions, it wasn’t only open to people who had registered for ATTD. It was live streamed across #dedoc° socials and is available now for anyone to watch on demand. So, watch now! It was such an honour to be asked to moderate this session and to be able to present the three incredibly speakers from the diabetes community. Right where they – where we – belong.
DISCLOSURE
My flights and accommodation have been covered by #dedoc°, where I have been an advisor for a number of years, and am now working with them as Head of Advocacy.
Thanks to ATTD for providing me with a press pass to attend the conference.
I’ve always thought that being pushed out of my comfort zone is a good thing. There’s something to be said about feeling uncomfortable and being stretched outside the boundaries of familiarity.
And so, with that in mind, I jumped on a plane and flew to Barcelona for ATTD. If you read my last post, you’ll know it was nowhere near as easy and flippant as that last sentence sounds.
A lot of the stresses I had before I left ended up amounting to nothing. There were no endless queues at the airport, or crowds who didn’t understand keeping 1.5 metres apart. Almost everyone was wearing a mask. Security was even more of a breeze than usual (apparently laptops and other devices don’t need to be removed from carry-on luggage anymore), and, requesting a pat down rather than walking through the full body scanner was met with a nod and a smile.
Everyone wore masks boarding the plane and most seemed to leave them on throughout the flight. This isn’t something to treat lightly. The first flight alone was almost 15 hours long! My mask was removed only while drinking and eating, staying on snugly while I slept.
While there were no formal requirements for a supervised COVID test to enter Spain or return to Australia, my daily tests did cause 15 mins of countdown anxiety. One evening, someone messaged me to tell me that she had tested positive. We’d had a breakfast meeting the previous morning. I calmed my initial response (which was to freak out and burst into tears) by remembering that we’d all been masked up apart from the minutes we were eating.
When I arrived in Barcelona, I had been cautioned of convoluted arrival procedures and extra queues to check health and vaccination status. Before leaving, I’d had warnings and reminders from the airline and friends already there to make sure I’d completed my online Spain Travel Pass because the QR code would be needed. Except, it wasn’t. Passport control took under than 90 seconds. And my code wouldn’t scan for the woman checking my pass. ‘Where are you from,’ she asked me. When I said Australia, she laughed and told me just to go get my bag. (Clearly, she wasn’t up to date with our COVID numbers…)
Luckily, the people I spent most of my time with were all on the same page as me when it came to masking. We were not the norm. Most people were not masked up. I realised that when I walked into a hotel restaurant to meet someone a couple of hours after I arrived, and again as I walked into the conference centre on the Wednesday afternoon. As I stood on the stage to welcome everyone to the #dedoc° symposium, I was grateful to be greeted by a sea of masks with fewer than ten people in the packed crowd choosing to not wear one. And a couple of them searched in their bags for one after I and first speaker, Dana Lewis, thanked people for masking up.
I have to say it did surprise me to see so few healthcare professionals wearing masks, and eagerly reaching out to hug or shake hands when we met. I actually was okay with giving people I know a hug, but we always asked first. I adopted a weird kind of hopping around to avoid people I don’t know too well as they approached, instead extending my elbow.
I went into last week with a very clear idea of how I was going to, at all costs, avoid people. I’ve held tightly onto health measures (masking, distance, lots of hand washing, meeting people outdoors) since the pandemic began, and there was no way I was going to be partying like it was Feb 2020 just because I was back in Spain.
But there was a moment that I did throw a little caution to the wind. The evening I arrived, after my first meeting, I got in the elevator to the rooftop of the hotel where I was staying. It was the same place all the #dedoc° voices were, and they were having an informal meet up on the roof. I walked out, and a few of them – the ones I know well – screamed and charged at me. And instead of freezing and freaking out, I teared up and was happy to just be enveloped by them all. I was wearing a mask and, in that moment, that as enough.
Since I have returned home, I’ve been asked dozens of times what it’s like travelling and being at a conference again and how I coped. The answer isn’t straight forward.
Travelling again was terrifying. I didn’t enjoy being in transit at all. I struggled with there being so many people around me. And I was uncomfortable with the unpredictability of the whole situation. But I focused on the bits I could control and did my best to just deal with it.
Being at a face-to-face diabetes conference was in equal measure exhilarating and difficult. Being able to have in real life conversations with people about their advocacy and how they have been going is different to messaging or Zooming – it just is. Bumping into people in conference centre hallways starts conversations that absolutely wouldn’t have happened otherwise. And it’s those conversations that often lead to collaborations and new projects. I predicted in my last post that the muscle memory of a real-life conference would return without much effort, and I was right.
The equation for me is this: the good outweighed the bad. The moments of joy and delight dwarfed the moments of terror. The feeling of being part of something – that truly global diabetes community of truly incredible diabetes advocates and healthcare professionals and researchers – returned with a fierceness I wasn’t expecting. I felt at home and where I belonged, and the moments of anxiety – sometimes almost paralysing – were overcome by knowing that. And the peer support was immense. I didn’t realise just how much I needed that contact again.
I’m not going to be rushing back to the same conference and travel schedule I had built in 2019 – it’s not sustainable in so many ways. And there is a lot of risk assessment going on. I won’t be at ADA this year, but EASD is on the cards. Carefully chosen meetings with clear goals and plans are worthwhile.
The world is definitely a different place. But within those differences is the comfort of knowing that the diabetes world – the diabetes advocacy community – has absolutely not stopped doing what it does best. As I stood in corridors speaking with people and plotting and planning, or took the stage to chair a session, or caught up with people after hours on rooftops, I realised that it’s going to take a lot more than a global pandemic to stop the passion and dedication and determination of those who have one thing in mind and one thing in common: improving lives of people with diabetes.
DISCLOSURE
My flights and accommodation have been covered by #dedoc°, where I have been an advisor for a number of years, and am no working with them as Head of Advocacy.
Thanks to ATTD for providing me with a press pass to attend the conference.
I frequently say that these days, I do hardly anything when it comes to diabetes. I credit the technology behind LOOP for making the last four-and-a-half years of diabetes a lot less labour intensive and emotionally draining than the nineteen-and-a-half years that came before.
It’s true. Justin Walker’s assessment that his DIYAPS has given him back an hour a day rings true. (He said that in a presentation at Diabetes Mine’s DData back in 2018.)
The risk that comes with speaking about the benefits of amazing newer tech or drugs is that we, unintentionally, start to minimise what we still must do. I think in our eagerness to talk about how much better things are – and they often are markedly better – we lose the thread of the work we still put in. But our personal stories are just that, and we should speak about our experiences and the direct effect tech has in a way that feels authentic and true to us.
And that’s why accuracy in reporting beyond those personal accounts is important. Critical even.
Yesterday, the inimitable Jacq Allen (if you are not following her on Twitter, please start now), tweeted a fabulous thread about the importance of getting terminology right when reporting diabetes tech.
She was referring to a tweet sharing a BBC news article which repeatedly labelled a hybrid-closed loop system as an ‘artificial pancreas’. Jacq eloquently pointed out that the label was incorrect, and that even with this technology, the wearer still is required to put in a significant amount of work. She said: ‘…Calling it an ‘artificial pancreas’ makes it sound like a cure, like a plug and play, it makes diabetes sound easy, and while this makes diabetes less dangerous for me, adopting a term that makes it sound like it can magically emulate a WHOLE ORGAN is disingenuous and minimises the amount of time and effort it still takes to keep yourself well and safe.’
Jacq’s right. And after reading her thread, I started to think about the time and effort I had dedicated to diabetes over the previous week.
This weekend, I spent time dealing with all the different components of Loop. For some reason my Dexcom was being a shit and all of a sudden decided to throw out the ‘signal loss’ alert. After doing all the trouble shooting things, I ended up deleting the app and reinstalling it, which necessitated having to pair the transmitter with the app. This happened twice. I also decided it would be a good time to recharge my Fenix (Dexcom G5 transmitter) and reset it.
I ran out of insulin while at a family lunch, necessitating some pretty nifty calculations about how much IOB was floating around, and what that meant in terms of what I could eat from the table laden with an incredible spread of Italian food.
Saturday night, Aaron surprised me with tickets to the Melbourne Theatre Company and in our usual shambolic fashion, we were running late, which meant a little jog (don’t laugh) from the car park to the theatre. I was in high-heeled boots and a skirt that scraped the ground. The degree of difficulty WITHOUT diabetes was high. As I less-than-daintily plunked myself in my seat, I looked at my CGM trace, trying to decide if the 5.5mmol/l with a straight arrow was perfect or perilous, and did a bit of advanced calculus to work out if the audience would be serenaded by the Dexcom alarm at some point in during the 90-minute performance. I snuck in a couple of fruit pastilles under my mask, and surreptitiously glanced down at my watch every ten minutes or so to see if further action was needed. It was. Because that straight arrow turned into double arrows up towards the end of the play.
I spent two hours out of my day off last week for a HCP appointment, as well as several hours dispersed throughout the week trying to work out if there would be any way at all that I might be able to access a fourth COVID boosted prior to flying to Barcelona at the end of the month.
And that doesn’t include the time spent on daily calibrations required because I’m still using up G5 sensors, the pump lines that need replacing every three days (and checked on other days), reservoirs that need refilling (when I remember…) and batteries that need replacing. Or the time set allocated to daily games of ‘Where is my Orange Link’. And the brain power needed to guess calculate carbs in whatever I am eating. (And you bet there are clever people who no longer need to ‘announce’ carbs on the systems they’re using, but the other tasks still have to happen.) It doesn’t include the time out I had to take for a couple of so-called mild hypos that still necessitated time and effort to manage.
Short of a cure, the holy grail for me in diabetes is each and every incremental step we take that means diabetes intrudes less in my life. I will acknowledge with gratitude and amazement and relief at how much less disturbance and interruption there is today, thanks to LOOP, but it would be misleading for me to say that diabetes doesn’t still interfere and take time.
Plus, I’ve not even started to mention the emotional labour involved in living with diabetes. It is constant, it is more intense some days. There are moments of deep and dark despair that terrify me. It is exhausting, and no amount of tech has eliminated it for me.
The risk we face when there is exaggeration about the functionality and cleverness of diabetes tech is that those not directly affected by diabetes start to think that it’s easy. In the same way that insulin is not a cure, diabetes tech is not a panacea. Setting aside the critical issue about access, availability, and affordability, even those of us who are privileged to be able to use what we need, still probably find a significant burden placed on us by diabetes.
This isn’t new. Back in 2015 when Australia was the launch market for Medtronic’s 640G, it was touted as an artificial pancreas, and I wrote about how troubling it was. I stand by what I wrote then:
‘Whilst this technology is a step in the right direction, it is not an artificial pancreas. It is not the holy grail.
Diabetes still needs attention, still needs research, still needs funding, still needs donations. We are not there yet, and any report that even suggests that is, I believe, detrimental to continued efforts looking to further improve diabetes management.
All of us who are communicating in any way about diabetes have a responsibility to be truthful, honest and, as much as possible, devoid of sensationalism.’
It’s why I frequently plead that anyone who refers to CGM or Flash GM as ‘non-invasive’ stops and stops now. There is nothing non-invasive about a sensor being permanently under my skin and being placed there by a large introducer needle. Tech advances may mean we don’t see those needles anymore, and we may even feel them less, but they are still there!
We still need further advancements. We still need research dollars. We still need politicians to fight for policy reform to ensure access is easy and fast and broad. We still need healthcare professionals to understand the failings of technology, so they don’t think that we are failing when we don’t reach arbitrary targets.
We still need the public to understand how serious diabetes is and that even with the cool tech, we need warm hands to help us through. We still need the media to report accurately. And we still need whoever is writing media releases to be honest in their assessments of just what it is they are writing about.
Keep it real. That’s all I am asking. Because overstating diabetes technology understates the efforts of people with diabetes. And that is never, ever a good thing.
As if to prove the point of yesterday’s post, I’ve received dozens of lovely messages from people about how supportive they’ve found others with diabetes, and how building each other up is a cornerstone of the work they are involved in.
And as someone said to me today when I told them how many people had reached out: ‘I’m not surprised …’
Neither am I. That community support is on show everywhere you look right now. And no more so than with community efforts to support our diabetes brothers and sisters affected by the war in Ukraine.
#SpareaRose for Ukraine has now been running for about two and a half weeks. Over $115,000 has been raised in community donations, plus another $80,000 or so in corporate matching. Just a reminder: this is a community initiative. There are four people doing a few things behind the scenes, but really, it’s the community that drives this campaign each and every year – BY the community, FOR the community.
The Dedoc voices community, a group of people with diabetes, has been instrumental in sharing details of #SpareARose for Ukraine once it had been launched. They have also been sharing other extraordinary efforts they’ve been involved in, and here are just some of them.
Meet: Dawn
Dedoc voice from Northern Ireland, and diabetes advocate extraordinaire, Dawn has been working with a group of people in NI, collecting support and supplies from the community to be packaged up and sent on to people with diabetes affected by the war.
We have been given disposable and reusable pens, more than 5000 units of insulin in cartridges and vials, glucometers, test strips, glucagon, hypo treats, pen needles, pump supplies for Medtronic and AccuChek pumps, and lancets galore.
We’ve also had a donation of disposable pens from women with GDM who have had their babies. The support and generosity has been truly phenomenal. Two of us took the items we had to a diabuddy for collection by Ukrainian Doctors. These Doctors have also been given an ambulance to take into Poland and were also guaranteed transport for supplies by RyanAir into Poland more details about the medical team can be found here
If you would like to help, there is a go fund me page which you can access by clicking here.
(I can only imagine the supply of lancets are for a joke?)
Meet: Weronika
You may know Weronika better as Blue Sugar Cube on Insta and Twitter and seen her gorgeous artwork. She is a dedoc voice and an advocate from Poland, living in Belgium.
Weronika shared with me what she has been doing in what can only be described as a community AND family effort!
Together with Polish Diabetes Association, I organized a collection of diabetes supplies in Belgium for Ukrainian PWD.
Of course, the diabetes community didn’t disappoint, and many people instantly wanted to help. It took only 5 days to fill two huge boxes of glucose meters, test strips, insulin pens and needles, insulin pump equipment, sensors, and hypo snacks!
My dear husband helped me sort and pack everything. We already sent the two boxes to Poland via a driver who was so noble to take them to Poland for free.
All diabetes articles will be delivered to the Headquarters of the Polish Diabetes Association in Warsaw (with the help of my in-laws) from where they will be distributed as needed.
Packages are still arriving, and we are organizing the next shipment soon…
Meet: Caro
Caro has been a dedoc voice at a number of conferences now, and is a terrific advocate for technology use for people with diabetes. Here is what she has been doing in Germany.
At our looper meet up with PWD from around the city of Cologne, we collected supplies for people in Ukraine. As we have a Russian member who has Ukrainian friends, the motivation to support was even bigger. These personal contacts and their reports about the situation in Ukraine make us sad and stunned.
Another member of our group had connections to an organisation from Düsseldorf – they get trucks to Ukraine (even equipped with a fridge and able to cool insulin and other medical equipment).
Third way we support the Ukraine was to send insulin to the country via the organisation ‘Insulin zum Leben’ (the German Insulin for Life affiliate) which we are supporting already for many years.
At this meet up we collected all stuff we knew that could be needed, sorted it, labelled and packed it. Insulin, test trips, cannulas, USB charger, Hypo snacks, dressing materials, painkiller etc. We all know, supporting via the official organisations is the best way to support – and we do that.
Meet: Ineska
As well as being involved in dedoc voices, Ineska from Croatia is an IDF YLD and part of the Type1EU community. Together with the Zagreb Diabetes Association she has alerted Croatian Red Cross, Ukraine embassy in Zagreb and pharmacies across Croatia to reach out of people from Ukraine who had come into Croatia, so they can be provided with help.
Ineska shared some examples of the help that’s been requested:
Firstly, we got a call from Croatian policeman who was going to pick some kids and mothers on a border of Ukraine. He told us that he got a request from the Red for diabetes equipment of any kind, but specially insulin. We collected supplies within 3 hours with our diabuddies!
Then yesterday we got a call from Croatian Red Cross that they have a girl with diabetes, and she needs pump materials.
Also, we got a call from pharmacy that someone from Ukraine is asking to buy diabetes equipment, also for pump, but they can’t give it to them, because they need to have a prescription.
So, at the end we got so many calls, and this is only in ‘small’ country of Croatia. We are so glad, that with this one step we could help so much.
There are others in the dedoc voices chat that are sharing their stories of community efforts they are involved in. Leon from Australia is providing frequent updates from Medicines Sans Frontieres and sharing relevant links to different aid groups. Others are asking for contacts in different countries to pass on urgent messages. As always, the group is coming together to support each other with the aim of helping others with diabetes who are facing impossible challenges right now.
In yesterday’s post, I wrote about the community supports and looks out for each other. Spare a Rose is a great example of that. For ten years, people from all corners of the diabetes community have made it their own. It’s not about supporting the volunteers behind the scenes. It’s about doing a huge thing and supporting others with diabetes. Together. Because that’s what a community does.
You can still apply for to join the #dedoc° voices program at the upcoming ATTD conference. But be quick as applications close on 20 March. Click on the image below to be taken to the application form.
Disclaimer
I am an advisor to the #dedoc° voices program. I do not receive any payment for this role.
Sometimes it takes me a couple of days after a big diabetes meeting or event to work out my main takeaways. I think about it and throw things around, reliving certain aspects, considering what was discussed, carefully thinking about all possible interpretations to make sure that I am clear about what people were saying
I didn’t need time after last week’s World Health Organisation Focus Group on Advancing the Lived Experience of People Living with Diabetes because the takeaways were there straight away, loud and clear.
There were three things for me:
- The acknowledgement about the importance of language and communication. I wrote about that the other day.
- Barriers to access include far more than affordability. Affordability is absolutely a cornerstone of being able to get the best care, take the right meds and use the right technology, but there are a lot of other obstacles and blocks that impact on outcomes. More on this another time.
- But, for me, THE biggest take away was the support that was overflowing from most people in attendance, and they way they were looking out for each other, looking to each other, and looking for ways to remain connected to support the astonishing work being done in the community – from grassroots initiatives, right through to involvement in political campaigns at the highest organisation level.
I have been so lucky to be the recipient of that sort of support from other people with diabetes over the years. Whether it’s invitations to be involved in their projects, or having an EOI flyer flicked my way, or being recommended for something, the love and generosity of others with diabetes has certainly opened up a lot of advocacy opportunities. I have tried to pay it back, and, (to use a #dedoc° voices motto), #PayItForward as well. A benefit of working for a diabetes organisation has meant that I have been able to co-design and develop programs to involve others. Initiatives like the #DAPeopleVoice and countless speaking occasions, and nominating people for initiatives such as the IDF YLD have opened the door for others with diabetes to step through and find a platform for their own advocacy.
One of the things that I learnt early on is that there is a lot of stuff to go around. If people want to get involved, there are always ways in. Chelcie Rice’s ‘If they don’t have a chair for you, bring your own’ words ring in my ears a lot when I think about making sure PWD have a seat at the table, and I’ve extended that to ‘And make sure you bring a chair for someone else, or give yours up for them’. Increasingly, I’ve done more of the latter.
Also early on I learnt to ignore the people who did nothing more than complain about who gets invited where, instead understanding my own value and reason for being involved, while also making sure to find a way to bring along those who genuinely were interested in being included and were willing to work to make it happen. (The incredible responses to this tweet show how people got a break in diabetes advocacy and what it’s taken to keep going.)
Supporting others is as easy as sharing someone’s blog or social media posts, linking to them here in my own writing or to their Twitter handle when I mention them, celebrating their work to others and applauding their wins.
Attitudes of support were demonstrated in spades last week. I had direct messages from dozens of attendees, some reaching out for the first time, that were just so damn encouraging and kind.
At the same time, I was frantically messaging others to ask about their work and if there was anything I could do to promote it. I sent the #dedoc° voices application link to a number of people who were at their first advocacy meet, and hoped to do more.
One of the nicest messages I received was from someone I’ve known for years on Twitter, but never actually been at the same event or involved in the same project. We exchanged some lovely messages, acknowledging how terrific it was to finally find ourselves in the same Zoom room, and a hope that it would continue.
The overwhelming openness, kindness and consideration of others was disarming. There wasn’t a sense of competition or resentment for anyone doing other things. There was appreciation and respect of others’ efforts. And that led to meetings being set up, collaborations taking shape, and a list of exciting new things to check out and share.
Look, if this seems all a little utopian, maybe it is, and maybe I sound annoyingly Pollyanna-ish. I’m sure that there were some folks there who walked away with a very different vibe. And that’s fine. Not everything floats everyone’s boat. Perhaps not everyone connected with others the same way I did. Perhaps they weren’t as comfortable reaching out to others to offer their support, or maybe they didn’t see or hear anything they thought worth supporting. As always, diabetes experiences – whether in a clinic appointment or an advocacy event – will be different for different people.
For me, I started from a place of wanting to be there and wanting to connect with others. When I think about it, there is an element of selfishness in my advocacy work, as it’s allowed me to always find a way to connect with others with diabetes, to learn from them, to work together, to jointly elevate our place in the diabetes healthcare space. It’s served me well. And it’s given me the change to receive and give support to others, too. It’s a good place to start. And it’s a good thing to keep doing.
DISCLOSURE
I was invited by the WHO Global Diabetes Compact team to be part of the facilitators at the Focus Group on Advancing the Lived Experience of People Living with Diabetes. I happily volunteered my time.
Advocacy is a slow burn. I say those words every day. Usually multiple times. I say it to people with diabetes who are interested in getting into advocacy, not to scare them off, but so they understand that things take time. I say it to established advocates. I say it to people I work with. I say it to people in the diabetes world who want to know why it takes so long for change to happen. I say it to healthcare professionals I’m working with to change policy. I mutter it to myself as a mantra.
Slow. Burn.
But then, there are moments where there is an ignition, and you realise that the slow burn is moving from being nothing more than smouldering embers into something more. And when that happens I can’t wipe the smile of my face and I start jumping up and down. Which is what I was doing in my study at home at 2am, desperately trying to make as little noise as possible so as not to wake my husband and daughter who were sounds asleep in other rooms off the corridor.
The World Health Organisation conducted the first of its two focus group sessions for people with diabetes yesterday (or rather for me, early this morning), and I was honoured to be part of the facilitating team for this event. In the planning for the questions that would be discussed in the small break out groups, the WHO team had gone to great pains to workshop the language in the questions so they were presented in a way that would encourage the most discussion possible. That was the start of those embers being stoked.
I think that the attention to how we framed the discussion points meant that people thought about their responses differently.
The topics last night were about barriers to access of essential diabetes drugs, healthcare and technology. Of course, issues including affordability, health professional workforce, ongoing training and education were highlighted. These are often the most significant barrier that needs to be addressed.
But the discussion went beyond this, and time and time again, people identified stigma and misconceptions about diabetes as a significant barrier to people not being able to get the best for their diabetes. It certainly wasn’t me who mentioned language (at least not first), but communication and language were highlighted as points contributing to that stigma.
This recurring theme came from people from across the globe. It was mentioned as a reason for social exclusion as well as workplace discrimination. There was acknowledgement that perceptions of diabetes as being all about personal responsibility has affected how policy makers as well as community responds to diabetes – how serious they see the condition.
In the discussion about diabetes-related complications, the overall language had been changed from ‘prevention’ to ‘risk reduction’ and this was recognised in many of the discussions as a far better way to frame conversations and education about complications. This isn’t new – it was a recurring theme when a focus in the DOC was the hashtag #TalkAboutComplications. I wrote and co-wrote several articles about it, including this piece I co-authored with the Grumpy Pumper for BMJ.
The direction the discussions took were a revelation. No. It was a revolution!
So often at other events and in online debates when language and communication has been raised, conversation has been stalled by people pushing agendas about wanting to be called ‘diabetic’, as if this is the first and only issue that needs to be resolved. That didn’t even come up last night because the people who were highlighting the implications of language understood that when you look at the issues strategically and at a higher level, those details are not what matters.
What matters is looking at Communication with a capital C and understanding its influence. It elevated the discussion so far above the ‘it’s political correctness and nothing more’ that it would have been ridiculous to drag the discussion back to that level.
For years, there has been push back regarding communication because people have not stood back and looked at impact. That has changed.
When I wrote this four years ago highlighting that diabetes’ image problem diabetes – all those misconceptions and wrong ideas about the condition – has led to fewer research dollars, less understanding and compassion from the community, more blame and shame levelled at individuals … it was to emphasise that the repercussions have been significant.
Thankfully as more people started stepping back and considering big picture – health systems, policy, community education – I could see that there were shifts as some people stopped talking about political correctness and started asking what needed to be done to really move the needle. It seems that’s where the very, vast majority of people were during the WHO focus group
This diabetes #LanguageMatters movement stands on the shoulders not of the people who have elevated the issue in the last ten years (although those contributions have been massive!) or the position papers and guidelines that have been published (although those have certainly aided the discussion in research and HCP spaces), but rather, the people in the diabetes community who, for years, knew that language and communication was a driving factor in our care. People like those in the (Zoom) room yesterday.
Looking for more on #LanguageMatters
Click here for a collection of posts on Diabetogenic.
The Diabetes Australia Language Position Statement (Disclosure: I work at Diabetes Australia and am a co-author on this statement.)
The Diabetes Language Matters website which brings together much of the work that has been done globally on this issue. (Shout out to diabetes advocate Jazz Sethi for her work on this.)
DISCLOSURE
I was invited by the WHO Global Diabetes Compact team to be part of the facilitators at the Focus Group on Advancing the Lived Experience of People Living with Diabetes. I am happily volunteering my time.
It’s International Women’s Day and I want to it yell from the rooftops and celebrate the incredible women diabetes advocates who continue to lead and chart paths that are pioneering and innovative. But in equal measure, I want to crawl into a cave and return out of it once the performative platitudes are over.
And yet, I can’t go without acknowledging it, because there is literally one day a year when women are centred and even then, we must defend our right to a day that highlights the centuries of systematic inequality that entrenched misogyny has afforded us, and answer the inevitable question: ‘WhY iSn’T thErE an InTerNaTiOnaL Men’S DaY?’ (There is. It’s in November. Put on your own morning tea.)
We’re seeing more and more women talk about how they feel targeted and unsafe in all spaces – on- and off- line. It’s not because this is suddenly ‘a thing’. Rather it’s becoming more acceptable to talk about it and to call it out.
Which is what I do.
Last year, I wrote about an event I’d facilitated women and diabetes. When I linked to the post on twitter, I was accosted for my take which dared to suggest that misogyny contributes to so many women’s health issues being under researched and rarely discussed. And then I was told off for not crediting the men who had discovered insulin.
Getting #NotAllMen’d and attempting to centre men on a post about the prejudice women experience in healthcare did drive home my point, but really, it was completely unnecessary. And downright exhausting too.
Also last year, in preparation for a presentation about diabetes and menopause, I asked the DOC if they routinely had discussions with healthcare professionals about menopause and diabetes. I had naively thought that it would start a conversation with women in the community. Instead, I had some bloke have a go at me for not promoting low carb diets and topped it all off with a demand that I don’t talk with my peers about menopause because I have no health professional training.
Again, exhausting. But also, it’s just what women have come to expect. Being mansplained menopause or told that my own analysis of entrenched misogyny is wrong is simply part and parcel of being a woman who dares speak up.
Most recently, I’ve been dealing with some pretty damn pathetic anonymous trolling which is hurtful and ludicrous. Someone is so unimpressed with me they have felt the need to repeatedly let me know and inform me it’s why they refuse to support Spare a Rose, and that I need to stop suggesting that it is the only way the diabetes community can help people with diabetes in Ukraine. I’ve checked. I’ve not said that. Not once. So I’m not sure why anyone is going out of the way to deliberately highlight that no one must support the campaign. It’s not lost on me that of the coordinating group of this community initiative, I am both the only woman and the only one being targeted.
There is more to those messages though. There is also this: ‘You do nothing other than self-promote … and amplify yourself.’ I wonder how many men who share their work, tweet what they’re up to, feel proud of what they have achieved are accused of this. Because it has been a recurring theme throughout my career. That and being called words like strident, and being told that I should be reined in.
I don’t feel special here. There are many women who have had similar experiences. I could have just ignored those messages, or stewed away quietly. But I have chosen to share them and I do so knowing there is a snowball effect in play. Undeniably, it’s easier to pop your head above the parapet when you know there are others out there too. When we recognise our own difficult experiences bravely shared by others, we find it easier to bravely step up too.
I know this, because I spend a lot of time reaching out to thank women who have shared their story. And every single time I’ve ventured to share the gendered crap I’ve dealt with, I’ve had dozens of women send me a DM to tell me their experience is similar. Sometimes, we privately share who is the behind our experience, and it is remarkable just how often the same names come up. And it is also remarkable just how often those men claim to be allies. Those same men who can’t help but refer to people like me as angry women. Is it important for them to point out my gender when they’re having a go? Apparently, yes.
I am more than happy to be called an angry woman, a strident woman, an irate feminist. I will wear those labels as badges of honour. Because I know this: If you see and hear woman calling out the crap and respond by calling us angry women, you have played your cards and they show us that you are a misogynist. You are showing how you can’t handle strong women. And you are speaking when you should be listening.
There are some far more celebratory IWD posts on diabetogenic, and I encourage you to read them because the women acknowledged deserve the recognition.
Usually, as February comes to a close, there is a flurry of excitement in the diabetes online community as the final tally for the annual #SpareARose campaign is announced.
This year is different. With war breaking out in Ukraine, it didn’t make sense to end the campaign at the exact moment that many in the diabetes community were wondering how to help our brothers and sisters affected by the war.
And so, after a frantic 24 hours of emails, text messages, phone calls and people doing things, #SpareARose for Ukraine was launched.
It’s live. Right now. And you can be part of it.
The colours may have changed a little, but the campaign remains that same: a donation – not matter how big or small – will help people with diabetes living in challenging situations. All funds are donated directly to Insulin for Life, a charity that has years of experience working providing insulin and diabetes supplies to under-resourced countries and responding to emergencies. This is an emergency.
Insulin for Life will be earmarking funds donated in March for their efforts supporting people with diabetes affected by the war in Ukraine. They are part of an international consortium, with partners in Ukraine, and they have supplies ready to go if, when and where they are needed.
You can help by sharing details of how to donate to #SpareARose for Ukraine with your networks. Speak with your workplace to see if they will support the campaign by matching employee donations. You can connect with the campaign online (Twitter, Facebook, Instagram) and share what we’re posting. Remember to share outside as well as within the DOC to reach as big an audience as possible.
And, of you can, you can donate.
#SpareARose for Ukraine builds on what has always been a community campaign. It was started by diabetes advocates, it continues to be coordinated by diabetes advocates, all on a volunteer basis. It is underpinned by the philosophy ‘BY the community, FOR the community’. Please support any way you can.
Gosh, it’s been a hot minute since I last did one of these. The whole point of Interweb Jumble posts on Diabetogenic is to highlight anything that has caught my interest in the online diabetes world, write about initiatives I’ve been involved in, and, most importantly, to elevate the great work being done by others living with diabetes. Building folks up and promoting their amazing efforts has been at the heart of what I do, so I’m always happy to share what others are doing.
Grab a coffee, tea or shandy, (Don’t. Don’t grab a shandy), and read on.
Diabetes Chat
YES!! There is a new place to congregate online, in a different format, and with this one, you get to hear people’s voices. (Sorry to everyone who had to endure my 7am Aussie accent last Tuesday!). This is a new initiative that’s been set up by three DOC folks – Tom from the UK, and Chris and Sarah from the US, utilising a new feature on Twitter called Spaces. It’s a terrific way to host an online peer meeting, creating yet another time and place that is BY people with diabetes, FOR people with diabetes. There is a weekly guest who gets put through their paces with terrific questions from the hosts and those listening in, and an open mic chat time as well.
It’s super impressive to see people from all over the globe participating. It reminds me a little of the DSMA tweetchats which are very welcoming and open to all, regardless of where you live around the world.
Search #DiabetesChat on Twitter for more.
dStigmatize
The team at diaTribe has once again tapped into one of the important issues, and much spoken about topics in the diabetes community and developed a terrific new website addressing diabetes stigma. It’s called dStigmatize and you can find it here.
I’m delighted to see Diabetes Australia’s work on stigma and language highlighted so prominently on the site (disclosure: I work at Diabetes Australia and have been involved in this work), including the videos from last year’s Australian National Diabetes Week campaign, which have been viewed hundreds of thousands of times.
Seasons of…diagnosis
New research out of Finland asked if more people were diagnosed with type 1 diabetes during colder months. You can read the paper here.
And a discussion on Twitter about it here.
HypoRESOLVE podcast
The HypoRESOLVE comms team created a new podcast to showcase the incredible work of this researchers involved in the project, with a strong emphasis on how people with diabetes are involved in the project. I was delighted to host this podcast and speak with some truly remarkable clinicians and researchers as well as other people with diabetes who are on the projects Patient Advisory Committee. (Disclosure – I am on the HypoRESOLVE PAC. PAC members are now paid an honorarium for our time working on this project, however we were not at the time of recording or working on this podcast.)
Here is the most recent episode (on Spotify).
Better engagement with PWD = better services
Great paper from a team out of the UK looking at how connecting with the lived experience expertise of people with diabetes, health professionals and diabetes health services can improve service delivery.
One of the co-authors is one of the GBdoc OG, Laura (@Ninjabetic1 on Twitter), and it’s great to see her name back in the diabetes world, contributing to this important discussion.
And the DDA podcast…
The Danish Diabetes Academy developed a podcast out of their Winter School that featured Postdocs who had participated in the academy speaking with others in the diabetes world to discuss who academic researchers work to ensure their research reaches and benefits those they are researching. I was so honoured to be invited to be interviewed for their first episode and answered questions about how communication is important when engaging people with diabetes to be part of the research process. You can listen here.
Language Matters for Portuguese speaking friends with diabetes!
The latest in the Diabetes #LanguageMatters stable is this document out of Brazil. Always terrific to see more and more statements coming out, highlighting the importance of language and communication in diabetes.
Thinking of starting on an insulin pump?
If so, the awesome Grainne at Blood Sugar Trampoline has you covered with this post. It is truly one of the most measured pieces I’ve read about things to consider if you are on the path to starting an insulin pump. The gushiness and superlatives that many of us resort to when banging on about how much we love our pumps are replaced with sensible, and practical advice and suggestions. If this is where you’re thinking of taking your diabetes management, Grainne’s piece is a must read.
Who doesn’t want to come to ATTD!?
#dedoc° voices is back and heading to ATTD in April this year, and applications are still open if you would like to be considered as part of the program. Successful applicants will be granted access to the entire ATTD program, giving them an opportunity to share what they see and learn with their networks. Make your submission count – this is a competitive process and success is more likely for those who take the time to provide details of how they will be involved in the program. Details here.
(Disclosure: I am an advisor to the #dedoc° voices program. I do not receive any payment for this role.)
World Health Organisation
In March, the World Health Organisation, through the Global Diabetes Compact, is hosting a two-day focus group for people with lived experience of diabetes. If you’re interested in getting involved, there is an expression of interest process you can complete here.
Also from WHO is this survey which is asking people with diabetes how to improve messaging and communication. You only have until 28 Feb, so get onto it now! (Disclosure: I was a volunteer consultant in the development of this survey)
Massive kudos to the Global Diabetes Compact team who are doing an absolutely stellar job engaging with the community. Always so terrific to see!
A diabetes sea shanty…
You’re welcome.
(Follow @TypeWonDiabetes on Instagram here.)
People with diabetes and their involvement in research
An end of year delight was this article that I co-authored making it to publication. The article is about how to better involve people with health conditions in research (which really seems to be something I’ve been very focussed on recently!).
Spare a Rose – last push
February still has a last few days which means that Spare a Rose isn’t over yet. You can still donate and contribute to this year’s total and support people with diabetes in under-resourced countries through the Insulin for Life program.
I was interviewed for an article last year and loved the copy they came up with, but it was the heading that got me. ‘Living a Life of Advocacy’ it screamed at me bold text, perfectly popping out from the hot pink background of the photo they’d selected to accompany the article.
The photo is from a while ago now. It was 2013, and I was on a stage in Paris where I’d been invited to give a keynote at Doctors 2.0 – a digital health conference that brought together people using, developing and constantly thinking about digital health solutions. I look at that photo and love the action shot of me mid-sentence, one hand holding a microphone, the other waving, because of course.
But I also know that at the time I was about 10 weeks pregnant and behind the confidence I projected on that stage, I was terrified and anxious. It was a terrifying time as I balanced wanting to be the best advocate I could while also wanting to bunker down back home, wrap myself in cotton wool and do nothing but protect the baby I was growing.
As I spoke about how digital solutions bring together a diabetes community from across the globe, I didn’t know that a mere four weeks later, while in New York, I would miscarry my much-wanted baby. I didn’t know that I was about to face the most challenging and emotionally traumatic period of my life. I didn’t know that, because all I thought about in that moment as I was on that stage with the hot pink background, was how important being there was – people with diabetes on stages as equals with health professionals, disrupters and industry. It was big!
Living a life of advocacy. All while almost being afraid to breathe because I was worried that every jolt, every movement, and the active way I present was endangering the baby. No one else would have known that was going on. There was one person, and one person only, at the conference who knew I was pregnant, and she was sitting next to me on that stage. I figured that I needed a friend with me if something went wrong. No one else was knew, and no one – no one – knew how afraid I was.
In a recent podcast interview, I was asked where this advocacy drive came from. Without missing a beat, I answered that it was in my bones. Because it is. My mum, the trade unionist, had me at protests while I was still in a pram. I went to university to study music, but it makes perfect sense to me and those who know me that I’ve wound up doing what I do, being who I am, advocating my way through my days. In my bones.
But that doesn’t make it easy. It doesn’t stop the burnout from it, or from feeling overwhelmed. And when it’s diabetes that is the focus of those advocacy efforts, while at the same time, I spend so much time focusing on living with diabetes, there’s a weight that seems compounded. It is heavy.
Last year, almost 12 months ago to the day, someone decided to email me about Spare a Rose, reaching out through my blog and, with nothing better to do, thought they should let me know that no one cares about the campaign, and that I should understand what people think about me (which wasn’t much, apparently). It was shitty, it was unnecessary. It was unnerving. After the third or fourth one of those emails, I decided to share one on Twitter. I had no idea who it had come from, but I figured that whoever it was would see my tweets and understand just how upsetting it all was.
It did the trick because it was the last time I heard from my anonymous critic. At least, for the 2021 campaign.
Alas, a week into February 2022, old mate was back, this time with a comment on my blog post about Spare a Rose. I’m guessing it’s old mate – I could be wrong, because who knows when people won’t put their names to things, but the sentiment was the same. It has the same hits as last year. It’s cruel and unnecessary and, once again, has completely rattled me.
It confuses me beyond belief that of all the advocacy issues I’m involved in, it’s the one that literally is saving the lives of other people with diabetes that was the reason someone thought they would take the time to message me. I mean, I get my fair share of criticisms about language, and other topics that are not everyone’s cup of tea. But surely if there is one thing we can all agree on, it’s that a campaign that is saving the lives of people with diabetes in under-resourced countries is not controversial.
Surely.
It all feels so, so heavy.
I know I’m not alone. I know it is a side effect of advocacy. I look to advocates in the diabetes world and I am in awe of what they do.
I am in awe of people advocating to healthcare professionals to be more mindful and thoughtful of the way they interact with people with diabetes.
I am in awe of people who work in industry, invading that space, gaining employment and while they are there, building a career that is forged in advocating to create devices, and device adjacent materials to make diabetes better, easier – and those devices more relevant.
I am in awe of people advocating about the injustices of insulin pricing and access, because they want to change the paradigm that means that some people simply cannot access the very drug they need to stay alive.
I am in awe of people who advocate quietly for years, and make big change by doing small things, over and over and over again.
I am in awe of advocates who have not waited, and instead, built solutions to make their lives easier and less burdensome and then – once they had worked it all out – made it free and available to anyone else who wants to benefit, and then remain there to support them.
I am in awe of creative people who use art, poetry, drama, comedy, music, as advocacy tools to show people how diabetes impacts everyday life and to change how the world sees those of us living lives of diabetes.
I am in awe of the work all these advocates do, and I wonder if they’re also feeling that physical weight that comes from their advocacy.
Do they feel that pressure coming from all different directions, weighing them down from above while also feeling as though it is crushing them from the sides? Do they feel overwhelmed?
I do. And it really, really is heavy.
Diabetogenic 