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The last time I was in Stockholm was seven years ago for the 2015 EASD Conference. This year, as I walked to the conference centre from the train, everything about the venue flooded back. ‘Here we go again,’ I thought. Except this time was different.

I wrote this about #EASD2015:

‘There is much mention of the ‘patient perspective’ and on Monday there was an entire symposium dedicated to it. Unfortunately, there wasn’t an actual ‘patient’ on the panel, which surely is weird...But despite the limited presence of PWD in the official programme, there are a lot of satellite events and activities taking place.’

One of those satellite activities was the first ever #docday°. It was in a musty, overheated, overcrowded back room of a co-working cafe, and it brought together a rabble of diabetes advocates from around the world who had somehow made their way to EASD. I think most of us were there with Roche or Johnson and Johnson for one of their blogger events.

But #docday° was different. This one was completely about and by people with diabetes, showcasing community and peer support. People shared their advocacy efforts and what they were doing in their own networks to support people with diabetes, and shared ideas about how others could do the same. Despite being all about diabetes, we were not welcome as a group at the biggest diabetes conference in Europe.

Fast forward seven years to this week, and the same spirit from the first #docday° event was visible. But this time, it was on stage as part of the scientific program at the conference. The #dedoc° Symposium was on the first day of EASD and it set a tone of inclusion and collaboration, making a very clear point that people with diabetes have a rightful place here, at professional conferences.

Adding to the #dedoc° symposium were the #dedoc° voices – diabetes advocates from across the world – participating fully in the conference. This is the largest scholarship program in the world for diabetes advocates and they made sure they were seen and heard! Everywhere! You only needed to walk the corridors of the conference to see the voices collaborating, not only with each other, but with health professionals, researchers and industry. Social media coverage of the EASD is dominated by the constant stream of ‘reporting back’. And almost evert single health professional I spoke with at the conference knew about #dedoc° and supported our very clear mission of #NothingAboutUsWithoutUs. How amazing is that?!

#dedoc° is all about inclusion. That’s why we can, hand on heart, say that we welcome advocates from around the world to become a #dedoc° voice. But it’s more than that. Our events are open to everyone, including our symposia at diabetes conferences. At EASD, our session was the only one that was live streamed to everyone and anyone via our socials channels. No one needed a costly registration to get inside the Stockholsmassan or another way in. Everyone could see Andrea Limbourg speak about some incredible work from advocates in Indonesia, France and Ireland, and Jeff Hitchcock explain how Children with Diabetes managed to keep supporting families of kids with diabetes throughout COVID, and Tom Dean share details of the brilliant #DiabetesChat and how he has embraced the idea of providing a truly welcoming platform for diabetes friends from around the world to gather on Twitter Spaces for a weekly chat. And Bastian Hauck tell the story of that overheated room for the first #docday° and how what happened on that afternoon planted a seed for a global movement of people with diabetes. #dedoc° provides a platform to elevate others. It’s a privilege to be part of it. 

If you missed the #dedoc° symposium at EASD, here it is!

Disclosure

My travel and accommodation were covered by #dedoc°, where I am employed as Head of Advocacy. Thanks to EASD for the press pass.

I recently was invited to run a workshop for health advocates (not just diabetes) who are affiliated with health and community organisations either as employees or volunteers. I was asked to primarily focus on safety in advocacy communities – both online and in person. All participants were women. This was interesting to me because the workshop was open to anyone who was a health advocate – not just women. I could see why, after a few short minutes in, it was women who were keen to come together for this topic and talk about it in a safe space, with other women. 

I was delighted to be involved for a couple of reasons: 1. It’s important and 2. I know that when I run a workshop properly, I walk away learning a lot. And this was a topic I wanted to learn about. I set about developing a very vague program that would leave a lot of time for experience sharing and co-developing ideas that could be used by everyone in the room. I had a few discussion starters and things that I think have worked for me, so they formed the basis of the workshop, but most of the suggestions came from the day and with permission, I’m sharing some of the ideas here. 

Before I do that, though, I want to highlight the overarching message was that health communities and groups are really important and really valuable. I know I frequently talk about not needing to love everyone in the diabetes community, and how critical it is to find the people you want to be around, who are supportive, who build you up, who you build up and who make you feel safe. That squad becomes sacred. Everyone else spoke of the same thing. One woman mentioned that it had taken her years to find the right people in her health community before truly understanding how peer support can be so beneficial. Many mentioned that it took time to work out exactly what they were looking for – was it friendship, solidarity, advocacy mates, opportunities to grow professionally? There are as many reasons to ‘do’ peer support as peer support models!

But even knowing that, it came as no surprise that every single one of the dozen or so women participating in the workshop had examples of where they had felt unsafe, vulnerable, targeted, or exposed in their own health communities. As stories were shared, there were frequent looks of recognition and heads nodding. Many said it was the first time they had ever spoken about these experiences. And others took time to warm up, asking several times if anyone would know what they had said – worried that they may be identified. This reminded me a little of the Ascensia Women’s Diabetes Social Media Summit I facilitated last year. I’d probably done close to a dozen of those before and each one involved a lot of social media outreach while the event was taking place. But this event was different. This one, was not quite as open. As facilitator, it’s my job to read a room, and the reading I got was that there were a group of women who wanted to share in private. And so, we did. As happened again at this recent workshop. 

None of the ideas I’m sharing will identify anyone, and this post has been reviewed by the people who attended. Safety of the women is my primary concern. So, here are some ideas that may or may not be of use to folks out there:

  1. You are not alone. Feeling unsafe in a community group can feel isolating, especially if there are cliques and groups that seem to form alliances. But there will be others you can turn to – often outside the group. I know I have turned to people outside the diabetes world at times to learn about how they have managed certain circumstances. It’s fascinating just how transferable things can be and how universal others are!
  2. There are reasons that functions such as block and mute are available on all social media platforms. But go one further. By blocking certain accounts, you may still see people you would prefer to distance yourself from. Mute their name, their account handle and, if they are associated with any specific words, terms or hashtags, mute those too. (So, want to not see my stuff? Block #LanguageMatters and mentions of coffee, stripes, bookstores, baking and red lipstick.) 
  3. Keep records. Even of things that seem irrelevant. I have an online folder where I collate anything that has ever made me feel unsafe or helpless. It’s shared with others, so they know what’s going on. 
  4. Talk to your workplace or associated organisation. This was one of the points that I wanted to raise. As all participants were either employed by, or volunteers for, health organisations, they have access to several services to support them if they feel unsafe. Perhaps they can use the organisation’s EAP which can be a terrifically helpful resource. It’s also important that those records you keep are seen elsewhere and there is a timeline of when things happen, and they are reported in real time. I do this a lot, mostly because it helps to talk to someone. Sometimes it’s done proactively. Other times, it’s after something happens. For example, the first time I spoke about DIYAPS and a slew of HCPs made formal complaints about me daring to talk about something so dangerously off label. Or the time a diabetes educator wrote to my employer after I called them out for tone policing me. There have been the multiple times people in the low carb community have become aggressive and threatening. Or just weird. There have been times when I’ve spoken with the CEO or other senior managers about situations and as well as being great sources of advice and comfort, it also means that they have an idea of how things started and are going. Oh, and it means there are few surprises!
  5. Walk away – for a bit or a lot. No one is obliged to continue to be involved in advocacy spaces or being part of a community if it is not working or if it is feeling unsafe. 
  6. Go incognito. My name and face have always been associated with the advocacy work I do because that is what I have chosen. But there are times that I wish I’d come up with a nifty pseudonym (Blossom?) and a cute meerkat picture. I know that probably wouldn’t have been possible considering the number of quite public facing things I do means there’s limited anonymity. But there are lots of super effective advocates who are anonymous when doing any online work, and that is absolutely an option. It doesn’t mean that you don’t need to do any media or presentations. It just means not linking the public stuff to your socials. A couple of women at the workshop do that, and I somewhat embarrassingly squealed when I realised that they were amazing anonymous campaigners I’ve learnt so much from over the years!
  7. Learn the anatomy of gaslighting. It’s an artform, but it’s a predictable one. And expect to be gaslit if anyone ever takes objection to what you do – especially if the source of that objection is from a group that is used to not being challenged. Don’t believe me? I present exhibit a: #AllLivesMatter and exhibit b: #NotAllMen. The term gaslighting was coined to refer to misogynistic abuse and manipulation and it often presents that way these days. Learn how it works and you’ll be astonished at how frequently it is used to disempower women.
  8. Be prepared for your work to be challenged; to be told you’re not good enough; to be told that you are not worthy; to be told that your work is irrelevant and insignificant; to be criticised for your successes and to be diminished. The first time that happened to me, I was crushed. Now, it’s only mildly soul-destroying. (This isn’t to say that people can’t disagree with your work. Of course, they can, and they will. And that’s perfectly fine. It’s when your work is dismissed and disparaged, and you are personally targeted that it can be especially challenging.) 
  9. Cry. This was my suggestion. I know it sounds ridiculous, but it really helps. I think it just comes from the idea of giving myself permission to not have to be confident all the time and to admit when I am feeling especially vulnerable. When there were weird emails coming to me about fundraising activities, I spent a lot of time bawling. 
  10. Be public about how you are feeling and your experiences. This is a tough one, because it can add being vulnerable onto an already vulnerable situation. But if you are able to assess if it is going to help you get through it, go ahead. 
  11. Ignore it. That sounds naïve considering some of the points I’ve shared, but we all agreed that in some instances, this does work and is the best way forward (albeit with keeping notes). 

It is undeniably true that women face a lot of rubbish online and a lot of that is from men. Women who dare to be strident, vocal and stand up and are confident often get it more. We see it everywhere. But I will add that as a straight, white cis woman, I know that the lousy behaviour I’ve experienced is nothing compared to women of colour and people from the LGBTQIA+ community. I’m so grateful to people from those groups who are bravely sharing the horrible attacks they receive and absolutely feel that doing what I can to support them, listen to them and believe them is essential.  

The women in the workshop are so committed in their advocacy efforts. It seems unfair that they have had periods where they’ve felt unsafe or targeted. I know how hard it is. Maybe the tips in this post might help others and if they do, great! And if you are reading this and prickling because you object to what you’re seeing, please remember that these experiences are from women who have had a tough time. That doesn’t in any way delegitimise what you have experienced. But I hope that everyone does understand and accept that in living with the patriarchy and with internalised misogyny pretty much part and parcel of everyday life, women do face an unfair share of rubbish, including in advocacy communities. 

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:

  1. The acknowledgement about the importance of language and communication. I wrote about that the other day
  2. 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. 
  3. 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.

This. On a tee-shirt, please.

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. 

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.

Click image to donate

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. 

February 1 and Spare a Rose. The two go hand in hand in my mind. It’s when the diabetes community comes together to support a campaign that gives back in the most fabulous way. For anyone who is new here, or who isn’t sure why the DOC takes on a fetching red hue for the month of February, let me explain. 

#SpareARose is a beautifully simple idea that asks people to forgo one rose in the bouquet to their love on Valentine’s Day, and instead, donate the saving from that one rose to a charity that supports people with diabetes in under-resourced countries. That one rose (about $5/£5/€5) covers the monthly cost of insulin.

Since 2013, the campaign has been known as Spare a Rose, Save a Child, and the charity that has received all donations has been Life for a Child. Over those nine years, the diabetes community – people with diabetes, people affected by diabetes, diabetes organisations and diabetes industry – has raised close to US$400,000, providing months and months of insulin to children in under-resourced countries. Plus, it’s raised the profile of the charity. Back when it started, very few people in the diabetes community knew about Life for a Child. Now, it’s supported financially by many, and recognised by even more. 

For 2022, the campaign is doing something different and broadening its outlook to support people with diabetes diagnosed as adults, or who ‘age out’ of programs that have an upper age limit. Life for a Child supports people up to the age of 26 years. But of course, type 1 diabetes is for life, as is the need for insulin, diabetes supplies and healthcare. 

With this in mind, #SpareARose has changed to Spare a Rose, Save a LIFE to recognise how the campaign will be helping adults with diabetes now, and the new charity partner – Insulin for Life. 

Insulin for Life is a global charity and supports people with diabetes in many of the same countries supported by Spare a Rose. It’s so wonderful to know that these people will continue to receive insulin and other diabetes supplies, even once they hit 26 years of age, and beyond. You can read more about the important work done by Insulin for Life here

Despite these changes, the campaign remains the same. One rose = one month of life. It’s a fabulously simple equation. What also remains the same is that it is a campaign BY the community, FOR the community. Every single person in the Diabetes Online Community can be a part of #SpareARose. We’ve seen tweetchats hosted by people across the world, we’ve seen fun challenges on twitter (remember #SpareAFrown?), we’ve seen videos and vlogs and lots and lots of blog posts. #SpareARose is on Twitter, Facebook and Instagram.

Of course, it’s not just financial contributions that make #SpareARose the success it is. It’s also about the community raising its voice to a veritable roar, and elevating the campaign and its charity partner. If you can donate, please do. If you can share, please do. Every time you share, someone might be click on the donate button, or the share button. 

#SpareARose to Save a Life. Is there a more meaningful gift to make in the name of a loved one, a friend, a colleague, or in your own name? I really don’t think so. 

Click to go to SpareARose.org

DISCLOSURE

I’m so honoured that I get to be involved in this campaign by sharing and promoting it as widely as I possibly can. I have spoken about #SpareARose across the globe and written dozens of pieces to raise awareness of this fabulous grassroots campaign, and anyone and everyone can do the same thing. Really, I have no disclosure. I volunteer my time, along with a number of other diabetes advocates from around the world who drive socials to talk up #SpareARose. We also work with diabetes organisations and industry to encourage donations. If you would like to get involved, please reach out. The more the merrier!

I talk about peer support being life-changing and life-saving. I say those words frequently when asked to speak and write about why peer support is so important to me, and what I hear about the value of peer support from others in the diabetes community. 

But does it get more life changing than this?

Today, I’m writing about Jason and Irina, a couple of people I’m lucky to call friends. 

They met during the weekly OzDOC tweetchats back in October 2016.  Those weekly, rapid-fire hours of diabetes chatter fostered many great friendships. And this particular friendship, formed in between 8.30pm and 9.30pm on a Tuesday evening, led to Jason moving states to be with Irina. 

They really did start with a tweet!

This is one of those magical stories where diabetes may be the thing that brought people together, but the connection is so, so much more than that. I’ve been lucky enough to catch up with Jason and Irina a few times in person over the (pre-COVID) years. I remember after the first time I met them, I walked away thinking what a magical couple they are – so right for each other. 

It really wasn’t a surprise when I found out that they were engaged. Jason kept me updated with their wedding plans and I was so honoured that my family was invited to share their special day.

And then COVID happened.

There’s no need to talk about how the pandemic threw everything it could at this couple to try to disrupt their wedding. I lost count of the number of times their big day was rescheduled, Omicron being the most recent attempt to try to stop it. 

But, as it turns out, Jason and Irina’s yearning to get married was way, way stronger than even the most virulent strain (so far) of COVID. A couple of weeks ago, Jason messaged to say that they were going ahead, with a smaller celebration. 

And so, on Sunday of last week, the happy couple got married in what Jason described as a fairy tale. 

So much love to the two of you. I can’t take any credit at all for this gorgeous union – all credit for that goes to these two lovebirds. But I can say that it started with a tweet in an OzDOC tweetchat. And that is pretty damn amazing!

Viva gli sposi!

The gorgeous couple

Last year, facing the first Christmas in the times of COVID meant that for many people, celebrations were very different to other years. Our huge Italian family gatherings were put on hold because the idea of sharing food around a table, sitting in close proximity, and basically bringing together thirty or so loud Aussie-Italians, all shouting, because we all believe we need to be heard over everyone else, was considered not especially COVID-safe. Instead, we met in parks for catch ups, physically distanced and masked up. 

We also waived gift giving for the year. Instead, I made donations in the names of all my cousins’ kids, and for the Secret Santa gifts we (thankfully) didn’t have to buy. (I remain especially Grinch-like about this particular Christmas activity and you can read all about why here.)

Charities are continuing to do it tough. Not only are fewer people able to donate, but more and more people are relying on their services to get through. 

Insulin for Life is once again running its Secret Santa campaign and what a great way to share some love this festive season! All donations make a difference, but to give you an idea, if you can spare $5, you’ll be providing a week worth of diabetes supplies – insulin, syringes, and glucose strips – to someone with diabetes in an under-resourced country. 

There’s lots of information available on the Insulin for Life website, but this one statement certainly brings home just how dire the situation is for so many of our diabetes brothers and sisters around the globe: For every two people alive with type 1 diabetes, one person has died prematurely due to lack of basic care.

Let me just share that again: For every two people alive with type 1 diabetes, one person has died prematurely due to lack of basic care.

Even though I have been volunteering for years now for different diabetes-related charities that support people with diabetes in under-resourced countries, I haven’t become immune to feeling shock when I see the stark truth written out in such simple terms. 

Every single person can make a difference and improve the situation for people with diabetes in these situations. Donating is not possible for everyone, but there are other ways to help. If you are on social media, you can amplify the cause and share this blog post, or the donation link with a few words explaining how impactful donations can be (use the hashtag #IFLSecretSanta). You can organise a fundraiser at work, school or with friends – doing the legwork to make things like that happen are important and make a huge difference too. You could do a Facebook or Instagram fundraiser. You can pass a hat around at Christmas drinks and ask people to throw in any loose change they have. No amount is too small. Every contribution matters.

I was just chatting with some of the amazing people from the Insulin for Life team, and I was thrilled to hear donations are already coming in from the community. Of course, I’m not surprised. The diabetes community has always been amazing at giving back, as evidenced by the amazing efforts seen over the years with Spare a Rose. 

Insulin for Life’s Secret Santa campaign is just getting started. Last year was the first year, and the community stepped up. And in 2021, even after the absolutely horrendous year so many have had, there are people in the DOC showing up to support the campaign once again. That’s what this is all about. It’s what it’s always about. 

Please click on the image and donate if you can.

Over the course of this year, I have been involved in a number of diabetes-related initiatives and events organised by the World Health Organisation. I remember the first email I received inviting me to be involved in an event because I was impressed with the communication about diabetes. There was a clear commitment to centring the lived experience, and it seemed that whoever was coordinating the project had an excellent understanding of the condition. I wasn’t sure if anyone involved was living with diabetes themselves, but I was certain they were working with people with diabetes to help shape the messaging. The most recent event, just last week, was coordinated by someone in the diabetes community – someone I’ve met in person and interacted with online for some time, and someone who is an excellent communicator with an in depth understanding of the global diabetes stage. 

And so, you would think that with all this diabetes intel and track record of great engagement that I would be surprised when the WHO made a spectacular blunder on Twitter yesterday with its efforts for World Diabetes Day. 

Except, I wasn’t surprised. At all. Because I know exactly how it happens. It’s the very definition of the left hand not knowing what the right hand is doing, and it’s all too common when comms teams don’t work with the teams focusing on lived experience. 

September marked twenty years I’ve worked in diabetes organisations in Australia. On top of that, I’ve been involved with the IDF for the last decade, as well as other diabetes organisations and companies around the globe. And in that time, I’ve seen some absolute clangers – clangers of which I first became aware once someone had hit share, and people with diabetes were, quite rightly, baying for blood. I’m not going to mention any, but I can tell you that I am still in therapy for a campaign that involved clowns, sharks, and spiders. Sigh.

It’s a horrible feeling when the community fury starts, and it’s directed at something you feel you should have been ahead of it or stopped it from happening in the first place. 

It’s also horrible to be put in a position of seeing this happen and not knowing what to do about it, or rather feel that whatever you do, it’s going to cause trouble. At the IDF Congress two years ago, sitting on stage in a panel with the newly minted IDF President, I was put in that position. After the President used a stigmatising image in his presentation, I had two options: sit there and say nothing or call it out. Option A would have resulted in people with diabetes not understanding how I could let it go. Option B could have resulted in furious IDF powers that be and me never working with them again. 

Option B was the only thing I could do. I knew that. But I cannot tell you the fear I felt as I spoke out on that stage, or afterwards. I barely slept that night, terrified at what was going to happen. Before the sun was up the following morning, I sent my boss, the CEO of Diabetes Australia, a message asking for an early breakfast meeting, linking him to a tweet with video of what had happened the evening before. In the back of a cab through the still-dark streets of Busan, I was so worried that I was going to be told that I handled it the wrong way and that I shouldn’t have said anything publicly. But that’s not how he responded. 

By that evening, I’d spoken with the IDF President, as had a few others, and together, we planned to pen an article about the how language can stigmatise diabetes. It was published the following year in The Lancet, and you can read it here

Last year, I stuck my head about the parapet when a state-based diabetes organisation in Australia (one for which I worked for 14 years) got things wrong when they were putting together an event with last year’s Australia of the Year (who has, I’m sad to say, been very stigmatising about type 2 diabetes since he stepped onto the diabetes stage). It was uncomfortable for me to write about the disappointment I’d felt seeing the language being used in promotion for the event, but I found myself in the same situation as I’d been at the IDF Congress the year before. I knew I had to say something. Because staying silent isn’t an option, no matter how uncomfortable it might be. 

I look at the way the comms team at Diabetes Australia operates now and the incorporation and focus on lived experience means that we run campaigns like this year’s stigma campaign and last year’s diabetes burnout campaigns. (And yes, I am completely biased because I work at Diabetes Australia, but this integration is something that means our messaging is far more hit than miss.)

Perhaps the thing that organisations need to reflect upon when something like this happens is just how easy it is to avoid doing it again. Despite yesterday’s clumsy efforts, WHO is already a long way there to doing better next time. It really is simple – work with community advocates, because there are always people who are keen and willing to be involved (hand raised!). And identify the people in the organisation who can help shape messaging and get it right. The WHO has those people there already meaning that it can happen straight away. (And for organisations that don’t, employ those people now.)

Over the last two days (or last two middles of the night if you’re perpetually in the wrong part of the world as it seems I am), I participated in the excellent first World Health Organisation Global Diabetes Compact Forum. (You can read the Compact which was launched earlier this year here.)

Once again, the WHO team had brought together stakeholders, including diabetes advocates, from across the world to talk about some critically important challenges facing people living with diabetes. These included access to insulin, research and innovation and prevention, health promotion and health literacy. The Forum was definitely not a ‘sit and be lectured to’ event. It was interactive, with everyone having the opportunity to participate and share their experiences and perspectives. The chat function was open and there was a constant stream of engaging, energetic discussion and sharing. 

The final session was about prevention and in his introduction, James Elliot, who expertly moderated the event, laid the foundation for the discussion. As with the previous sessions, there were no pre-conceived ideas or narrow focus about the topic. 

Prevention isn’t just about prevention of type 2 diabetes. There is a lot of work also going on looking at prevention of type 1 diabetes. And also, once living with diabetes, looking to do what we can to prevent diabetes-related complications.

When I spoke, the first thing I wanted to highlight was the problem I feel with the word prevention, and I revisited previous discussions in which I’ve been involved which highlight the struggle I feel with the word prevention. For too many people it is a word that offers a promise – a promise which guarantees that we can prevent aspects of diabetes that are often well beyond our control. I presented my case for instead focusing on how reducing risk is a far more accurate description of what efforts are truly about, a perspective that I have noticed is being used more and more.

The discussion pivoted to being about complications and associated stigma. Thankfully, this is not the start of the conversation about diabetes-related complications and the way people see them. When I wrote this piece back in 2013, I wrote about the way complications were presented to people with diabetes and how non-modifiable factors such as genetics, are rarely part of the conversation. There seemed to be a very one-dimensional presentation of diabetes-related complications: ‘take care’ of yourself, and you won’t get them. 

With communication around complications starting to be included in the language matters movement, I could see that too many people had been told that over-simplistic tale. 

It all got taken up a very significant notch when there was a concerted effort in the DOC to encourage dialogue about diabetes-related complications in a non-judgemental and safe way. Suddenly, we were seeing the hashtag #TalkAboutComplications accompany people’s stories, or questions others might have. This led to a real shift, as more and more people shared their experiences, with many saying that it was the first time they had seen others being so open about what was often considered a taboo topic. Starting to peel away the shame and secrecy of what can be a scary part of life with diabetes allowed many people to seek support from peers and help from health professionals. 

The legacy of the #TalkAboutComplications idea is that is that there are far more conversations today about diabetes-related complications. There is also a plethora of blog posts, podcasts, journal articles and conference presentations about the topic. I know that there is still significant stigma that we need to chip away at, but actually being able to easily find places online where conversations about complications are normalised and being part of those conversations is contributing to reducing that stigma. 

The session at the Global Diabetes Compact Forum was terrific because it tied together diabetes-related complications and stigma. With the theme of access this World Diabetes Day, perhaps we need to think about what that means when it comes to diabetes-related complications. While we absolutely do need to think about all factors at play when it comes to the development of complications, we also need to acknowledge that access is a factor when it comes to outcomes. Access to the right information, including information about risk reduction, access to insulin, access to glucose monitoring devices, access to complications screening, access to early diagnosis and treatment, access to peer support, access to stigma-free treatment, access to mental health support…all these have the very real potential to influence outcomes. 

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