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I probably should stop thinking of my job as ‘my new job’. I’ve been at Diabetes Australia now for well over five years. But for some reason, I still think of it that way. And so do a lot of other people who often will ask ‘How’s the new job?’

Well, the new job is great, and I’ve enjoyed the last five years immensely. It’s a very different role to the one I had previously, even though both have been in diabetes organisations. 

One thing that is very different is that in my (not) new job I don’t have the day-to-day contact with people with diabetes that I used to have. That’s not to say that I am removed from the lived experience – in fact, in a lot of ways I’m probably more connected now simply because I speak to a far more diverse group of people affected by diabetes. But in my last job, I would often really get to know people because I’d see them at the events my team was running, year in, year out. 

Today, I got a call from one of those people. (I have their permission to tell this story now.) They found my contact details through the organisation and gave me a call because they needed a chat. After a long time with diabetes (longer than the 23 years I’ve had diabetes as an annoying companion), they have recently been diagnosed with a diabetes-related complication. The specific complication is irrelevant to this post. 

They’ve been struggling with this diagnosis because along with it came a whole lot more. They told me about the stigma they were feeling, to begin with primarily from themselves. ‘Renza,’ they said to me. ‘I feel like a failure. I’ve always been led to believe that diabetes complications happen when we fail our diabetes management. I know it’s not true, but it’s how I feel, and I’ve given myself a hard time because of it.’ 

That internalised stigma is B.I.G. I hear about it a lot. I’ve spent a long time learning to unpack it and try to not impact how I feel about myself and my diabetes. 

The next bit was also all too common. ‘And my diabetes health professionals are disappointed in me. I know they are by the way they are now speaking to me.’

We chatted for a long time, and I suggested some things they might like to look at. I asked if they were still connected to the peer support group they’d once been an integral part of, but after moving suburbs, they’d lost contact with diabetes mates. I pointed out some online resources, and, knowing that they often are involved in online discussions, asked if they’d checked out the #TalkAboutComplications hashtag. They were not familiar with it, and I pointed out just how much information there was on there – especially from others living with diabetes and diabetes-related complications. ‘It’s not completely stigma free,’ I said. ‘But I think you’ll find that it is a really good way to connect with others who might just be able to offer some support.’ 

They said they’d have a look. 

We chatted a bit more and I told them they could call me any time for a chat. I hope they do. 

A couple of hours later, my phone beeped with a new text message. It was from this person. They’d read through dozens and dozens of tweets and clicked on links and had even sent a few messages to some people. ‘Why didn’t I know about this before?’, they asked me. 

Our community is a treasure trove of support and information, and sometimes I think we forget just how valuable different things are. The #TalkAboutComplications ‘campaign’ was everywhere a couple of years ago, and I heard from so many people that it helped them greatly. I spoke about it – particularly the language aspect of it – in different settings around the world and wrote about it a lot.

While the hashtag may not get used all that much these days, everything is still there. I sent out a tweet today with it, just as a little reminder. All the support, the connections, the advice from people with diabetes is still available. I hope that people who need it today can find it and learn from it. And share it. That’s one of the things this community does well – shares the good stuff, and this is definitely some of the good stuff!

Want more? 

Check out the hashtag on Twitter here.

You can watch a presentation from ATTD 2019 here

Read this article from BMJ

Over the weekend, I could not stop thinking about the words ‘from’ and ‘with’, specifically when used before the word COVID. The reason for this is that there seems to have been a subtle shift in the language used by NSW government and health officials when speaking about people dying during this wave. You see, rather than saying people are dying FROM COVID, they’ve started to say dying WITH COVID.

It means something different. It suggests that the person didn’t die from the virus, but from other factors. This is on top of the over-emphasis made at pressers about how people who have died have underlying conditions (I wrote about that last week). The implication is that the person was already unwell; that they were dying anyway.

I know I’m a little fragile at the moment, but not fragile enough to not get fired up when I see language being used in a harmful way, and negatively framing people with chronic health conditions. And so, today, I wrote to the Premier of NSW about this issue.

Here’s what I wrote:

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Dear Premier Berejiklian

My name is Renza Scibilia, and I am not one of your constituents. I don’t live in NSW, so you may be inclined to simply disregard this message. I hope you (or rather, someone from your team) will read it, because I know that what I have to say is relevant to many people in your state. In fact, I am sure that you have heard similar sentiments from people in NSW and I am adding my voice to that choir.

I don’t envy the position you are in right now and I’m not here to complain or credit the work you are doing regarding the current serious wave of COVID-19 in your state.

But I would like to make comment on something that is very close to my heart and an area in which I have some experience – health communications.

Communication matters. The words that people use are sometimes employed flippantly and sometimes they are employed deliberately. Either way, they are important. I fear that a change in the words you and your team have recently started is a deliberate move and I believe it is harmful to people like me. When speaking about the tragic deaths of people during this COVID-19 wave, you are now saying they die WITH COVID-19 rather than FROM it.

It may seem ridiculous to draw attention to words that appear so immaterial. Except, of course, they are not immaterial at all. And I believe that the shift is deliberate. And it does a great disservice to the people to whom you are referring.

I live with type 1 diabetes. It’s undoubtedly a serious condition, and one that I have had to manage for the last 23 years. On a day-to-day basis, I do quite impressive mathematical calculations as I measure glucose levels, dose insulin, consider my activity, and monitor my stress levels. This takes time – a lot of time. Outside of diabetes-specific care, I eat well, walk 10K steps a day, and manage my wellbeing as best I can.

Beyond what I do each day, I remain on top of my longer-term diabetes and overall health. I never miss screening checks – diabetes or otherwise; I have annual health checks and I can tell you my BP, resting heart rate, HbA1c, lipids and cholesterol. Most people my age are not this switched on with their health and wellbeing, and because I am, I can confidently say that I am healthier than a lot of people my age.

And so, when you use sweeping statements suggesting that if someone like me was to be diagnosed with, and die from COVID-19, that the reason for my death is my health condition you are not correct. I am not already dying from diabetes.

There is a difference between dying FROM COVID-19 and dying WITH covid. Your change in language is an insult and is upsetting to people like me and it is also misleading. I am healthy, I am fit and if I got covid and died, it would be because of the virus not because of my type 1 diabetes.

I urge you to reconsider how you are speaking about people like me. It is heartbreaking for us to know that in the minds of some, our lives, and our deaths, are so easily explained away. While I am sure your intention is not to make us feel as though we are nothing more than collateral, that is how it sounds. The language you are using frames us and our health conditions as being to blame. It makes us sounds and feel as though we already have one foot in the grave and I can assure you that is not the case.

Language matters, words matter. Please, please be careful when selecting yours.

Sincerely,

Renza Scibilia
Melbourne

At the last IDF Congress, I was invited to be part of the first panel on the opening morning of the meeting. It was all about diabetes and technology. Before the questions, the moderator, my friend Kyle Jacques Rose, asked everyone to introduce themselves. When it got to my turn, I said who I was and then shamelessly and unapologetically said I was the most important person the stage (along with Kyle and Manny Hernandez, who also live with diabetes). I remember looking steadily out into the audience as I made my claim to see the response. There was some who looked taken aback. And then some who cheered (thanks to the other PWD in the room!). 

Last week, I was in a two-hour workshop. I knew maybe half the people there. I also knew that I was the only person there to provide the ‘user’ experience. This isn’t uncommon, but it still drives me nuts when it happens, especially in a session that was about finding the right person-centred model of care in the age of telehealth. When it came to introducing myself, I thanked the organiser for inviting me, and said that it was great to be there…as the most important person in the (Zoom) room. One of the researchers I know well and who I have worked with quite a lot in recent years, smiled widely. At least I had one person in the room who got me. I watched again to see how others responded. Some certainly did look a little shocked. 

I explained that having people like me to feed into the work is critical, and that it was great that they wanted to hear from someone with lived experience to (and it would have been great to have seen a few other folks doing the same). 

So, how do I manage to be ‘the voice’ of lived experience when it comes to these sorts of things? When the meeting is diabetes-specific what do I say that captures the needs and wishes of every single person with diabetes? And, as in this meeting, when it’s about designing a system that is for all people with a variety of health conditions, how do I effectively and adequately tell the HCPs and researchers in the room just what it is that those people want?

The answer is, I don’t. Of course I don’t. 

I can’t speak to anyone else’s experience other than my own. I can’t say ‘I need this’ and assume that is what everyone else wants, and I would never make that assumption. Nor do I try to convince anyone that my needs and experiences are representative of anyone’s other than me. 

I will advocate until I am blue in the face that there needs to be many different people consulted and engaged in the design, delivery and dissemination of healthcare services, activities, and resources. Sometimes, that does happen. But if it is only me, I am never there to provide specifics of what needs to be done. In fact, I spend most of my time urging (begging and pleading) for assurances that there will be far more, far better, far meaningful engagement from this moment forward. 

I see my role is to pointedly, deliberately, unambiguously, and often, bolshily, make sure that the others in the room embed the idea of co-design in everything they do. And do it with wide representation.

I honestly don’t believe that there can ever be too much lived experience representation. But in the cases when there is only very little, I have rarely met anyone who claims to be the oracle of all things to do with lived experience or believe that their ideas are the only one worth listening to. In fact, anytime that has happened that person never is asked back. 

When I am asked to help find people for an advisory board, or to be involved in consultation, I always search for people who I know can look beyond their own experience. Again, it’s not because they are expected to speak for others. Rather it’s to know that there are others with different experiences and that, while they are the one at the table in that moment, they will do everything possible to make sure that those others are invited next time. 

And THAT, is why, at times like this, people like me are the most important people in the room – those of us who are banging a very loud drum to make sure that our cohort grows and grows. If you are working in healthcare and don’t have people with lived experience as part of the discussion, you’ve forgotten the most important people.

Stop what you’re doing, RIGHT NOW, and go find them. 

IDF Congress, Busan 2019. Opening panel. Some super important people on the panel. Manny, Kyle and I just happened to be THE most important.

Today is the day. The centenary of what remains one of the greatest medical discoveries ever. Here is a reworked post (first published here). There is not a day that I am not grateful for this discovery. And not a day goes by when I am not aware that the diabetes life I live and the access I have is not the same for everyone around the world.

And so today seems a really good day to make a donation to a charity that supports people with diabetes who need it. For me, when deciding which diabetes charities I’ve decided to donate to, it’s been important that the support is tangible. And that’s why I have repeatedly written about Life for a Child, and Insulin for Life on this blog, and supported them with regular donations for a number of years. Their works provides on the ground support, medications, diabetes supplies, education, as well as doing research. They also have an advocacy function, raising awareness of not only the work they do, but the people they support.

If you are able to make a donation it’s a great day to do it. In amongst the celebrations it’s important to remember not everyone will be able to do that today. Remembering them on this important day in diabetes history is very fitting.

Donate to Insulin for Life

Donate to Life for a Child

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There has been lots of discussion about what happened 100 years ago today – on 27 July 1921. University of Toronto scientists Fredrick Banting and Charles Best successfully isolated the hormone insulin. Today, that means that I am alive and kicking, 20 years after my islets stopped making any.

It means that type 1 diabetes treatment moved from being a starvation diet and not much else, to injecting a drug that was life giving and life saving.

It means that I take a drug that while giving me life, is also lethal and if not dosed carefully and with great consideration can cause terrible side effects.

It means that people with diabetes don’t die terrible, agonising deaths simply because they were diagnosed with diabetes.

It means that I need to be able to do crazy calculations to ensure what I put into my body completely and utterly imperfectly mimics what those with functioning islet cells do completely and utterly perfectly.

It means that there is a treatment therapy that gives us hope and life and allows us to live – sometimes very long, long lives.

It means that each and every day I feel fortunate to have been born when I was and not 100 years earlier.

It means I take for granted that I have access to a drug that keeps me going.

It means that there are far too many people around the world who still do not have access to the drug I take for granted. And 97 years later, that is not good enough.

It means that it was 97 years ago – 97 years ago – since the discover of insulin to treat diabetes and we are still without a cure.

And it means that I wonder when there will be the next breakthrough that is as significant and meaningful and life changing and life saving as what those two Canadian scientists discovered 97 years ago.

But mostly. It means that I live with hope. Hope that those scientists are somewhere working away, and perhaps – just perhaps – are about to find that next big breakthrough.

This stunning print is by Alex Durussel-Baker, a designer living in Edinburgh (click on print to be taken to her e-shop).
I’ve just placed an order so I can have this print in my office at home.
Alex is donating 20% of all sales of this print to Type 1 International, another charity I have written about a number of times, and supported financially.
You can see more artworks by Alex at her website, Diabetes by Design.

I don’t know too many people living with diabetes who haven’t experienced stigma. I know I certainly have. In twenty-three years of living with diabetes, it’s come from all directions: the media, healthcare professionals, work colleagues and even family and friends. That’s because people outside the diabetes community often have pre-conceived ideas about what diabetes is all about, and a lot of those ideas are plain wrong.

But stigma doesn’t only come from outside the community. In fact, for some people with diabetes, some of the most harmful and hurtful experiences of stigma has actually come from other people with, or affected by, diabetes. [Click here to read more…]

DISCLOSURE

This piece was published today on the Diabetes Australia website, and I wrote it as part of the organisation’s National Diabetes Week campaign on diabetes stigma. I work for Diabetes Australia, and am sharing this because I’ve chosen to – not because I’ve been asked to. The words here are my own, and perhaps the only thing missing from the published text is some of the decorative language I often use when speaking about diabetes-related stigma. Bottom line – all stigma sucks. Let’s #EndDiabetesStigma now.

‘It doesn’t matter to me; therefore, it doesn’t matter.’

Recently, former Prime Minister of Australia, John Howard was asked if he thought Australia was a racist country. This was in response to a survey which showed that 76 percent of respondents believed racism is indeed present in Australia. He replied: That has not been my experience. I have to respectfully, to that 76 per cent, say I don’t think there is underlying racism in Australia’. Surprise, surprise. The privilegest, whitest, mannest of privileged white men has had no experience of racism in Australia. 

I talk about privilege a lot, and I acknowledge mine daily. It’s an important and integral part of what I think about when working and playing in the diabetes space. Perhaps it’s because I’ve been working professionally in advocacy roles for a long time, often advocating for things that really don’t have all that much baring on me. But not once have I ever thought ‘That doesn’t matter to me, so it’s not important, and doesn’t matter, to others’.  That is critically important in my role at Diabetes Australia, because a lot of the work that I am involved in have little impact on my own diabetes management. 

And in my role as an activist outside of my day job, it is also important. When sharing my story or opinion, the two things that are important for me to relay (usually right up front) are that my story is but one story, and that due to circumstances well beyond my control, I am fortunate in many ways when it comes to access and affordability of diabetes healthcare and technologies. 

It’s for that reason that I get a little testy when people put down what others are doing with their own management, critical of others’ advocacy passions, or dismissive of someone’s opinion. 

Living in similar circumstances isn’t a guarantee of having the same experiences. Even when I am speaking with PWD whose situation may be similar to my own, I accept that what matters to me may not necessarily matter to them, and how I respond to certain circumstances may be different to their response. And vice versa. But I never ever belittle how they feel, or what they are for. And I never suggest that they are hysterical, or overreacting or being needlessly dramatic for feeling and behaving the way they do. 

It does happen though. 

I’ve seen people with diabetes shot down in our own community by others who have different opinions. Or if are really upset about something. And I’ve seen people scorn advocacy activities, or support and education programs that they think are unnecessary. 

I’ve been on the receiving end of criticism from people who don’t think the language matters movement is important. They say they have never felt stigmatised or judged, or that the words used by others about diabetes don’t negatively impact them, and therefore the whole movement is unnecessary. 

Not everyone has to have the same beliefs about diabetes. But to dismiss something because it’s not important to you is arrogant. And often, it’s because of privilege. Having the confidence to say something when you don’t like what you are seeing or hearing, or not needing a service or a resource does not mean it’s pointless. It just means that you have that already, or don’t feel you need it. 

There is a level of meanness to this as well. And an antagonism. It undermines others’ experiences and feelings. And it is a really crappy way of undercutting the work done by others. And it is, in effect saying, ‘Not important to me so not important at all’.

Last week, a response to an incident that happened during Australian Fashion Week resonated with me and the reaction by the woman at the centre of it all was interesting. Lisa Cox is a model who closed out the show, and as she made her way on the runway, something got caught in the wheel of her wheelchair, and she needed assistance in getting moving again. This was a high-profile show, and it got a lot of coverage. Many people from the disability community commented to say that while there may have been a few disabled models involved in the show, the end product was one of inaccessibility. They spoke about how Lisa’s runway experience mirrors their everyday experiences, with no thought given to people using wheelchairs or other mobility aids. 

Lisa wrote a piece for online women’s news network, Mamamia, about how horrified she was at this response from others in the disability community. She said that she wasn’t fazed, that being in a wheelchair means this sort of thing happens all the time, and she just gets on with it. It’s no big deal to her, and others should also just get on with things. 

Which is great! Her response is no less significant than others with opposing views. Others who have a different reaction have every right to be heard just as loudly. And they should not be called ‘difficult’, ‘angry’ or ‘aggressive’ for communicating their views in their own way. Appearance activist, Carly Findlay has made some excellent points about this issue, also addressing how it’s not okay that people are criticised for how they are addressing their concerns. Tone policing is rife. (You can read more from Carly here.) 

This goes far beyond the disability and other health condition communities. It is relevant when talking about women’s rights, LGBTQIA+ rights, and of course, when addressing racism. 

So, what happens when an incident like the one at Fashion Week, or a discussion about an issue like language pops up? Predictably, devil’s advocates jump on to suggest that ‘It’s a start’, ‘At least it’s something,’ or ‘They tried’. To that, I say, ‘A start is tokenism, and it isn’t enough’, ‘Don’t tell me I must be grateful for the bare minimum’, and ‘Try harder’. The thing is, devil’s advocates are often in a position of privilege, and when they don’t look beyond their own experience, that privilege is on show. Front and centre. 

More musings on privilege

This is what diabetes privilege looks like.

Diabetes is expensive. It’s an annoyingly costly, big budget, monstrous money pit, and I know no one who has ever thought ‘This diabetes thing is an awesome way to have less disposable cash.’

I used to refer to the money I paid for insulin pump consumables as ‘shoe money’, because for the three or so years after starting on a pump, and before consumables being listed on the NDSS, I couldn’t afford to feed my shoe habit as regularly as I’d have liked. 

More than twenty years later, my family’s finances may be a little more comfortable than back when Aaron and I were newlyweds with a newly-minted mortgage, but the cost of diabetes still factors into our budget, and it’s undeniable that sometimes diabetes feels as thought we’re flushing hard-earned cash down the loo.

I remember a few years ago tallying up my annual diabetes costs and I got so depressed I bought a new handbag. This makes no sense to anyone other than me, but I felt better, momentarily forgetting that I was a drain on my family, with a lovely new bag to carry around all my expensive diabetes paraphernalia.

Last week, JDRF Australia launched a new report which breaks down the economic costs of living with diabetes. It looks at costs to the individual with diabetes (and their family), as well as costs to health systems, health budgets and the economy. It also looks at how significant savings can be made by better investing in technology subsidies.

I can’t help but read these sorts of figures and get defensive because I already feel as though I am burden to the world and this just quantifies it. But that’s not the intent, and actually, having this sort of data is incredibly useful when adding up just what diabetes costs. It’s useful for diabetes organisations in our advocacy, and it’s useful for people in the diabetes community too. 

Of course, it’s important to remember that while putting a dollar figure on life with a chronic health condition is important, that is only ever one part of what needs to be included in its expenses. The non-monetary costs are huge, and must also be counted. There is the emotional toll, the physical toll and the impact on family and friends. And there is time. There is hypo recovery time, hyper management time, diabetes admin time and health appointment time. There is the time we spend on advocacy efforts, time dedicated to keeping our diabetes inventory in check and time spent every single day on diabetes tasks. There’s the time we spend dealing with burnout and distress. It adds up to so, so, so much time.

Not everyone has the desire or inclination to get out front and do some advocacy for themselves, but if you are that type of person, this report from JDRF gives you an added tool in your armoury. In fact, used with the most important part of the case you put forward – your lived experience – and evidence from clinical and behavioural research, you have a fabulously well-rounded picture of just how heavy the diabetes load. This provides a very useful case to take to your local Member of Parliament. Your MPs work for you – get them working! 

This is what I spoke about at the World Health Organisation Informal Consultation on Diabetes – putting together a complete narrative which wins hearts and minds. It’s impossible to ignore! 

You can watch the live Q & A I hosted with JDRF Australia CEO, Mike Wilson by clicking on the video below, and keep the conversation going at the Diabetes Australia and JDRF Australia Facebook pages.

Disclosures

I work for Diabetes Australia, and hosting these regular Q&As is part of my role. I was not asked to write about today’s Q&A, however, am sharing because this may be of interest to others in the diabetes community.   

Last night, all tucked up in my study at home, I participated in my eleventh (I think?) #docday° event. (A refresher: #docday° is a place for diabetes advocates from the diabetes community to come together, meet, mingle and share the work they are doing. The first #docday° was in a tiny, overheated backroom of a cafe in Stockholm that served outstanding cardamom buns. It coincided with EASD that year. After that, the events were moved to rooms at the conference centre where the diabetes meeting is being held, and an invitation is open to anyone and everyone attending, including HCPs, researchers and industry reps. I’ll link to previous pieces I’ve written about #docday° events past at the endow today’s post.)

The first #docday° for 2020 heralded in a new phase. It was at ATTD in Madrid, #dedoc° voices had been launched and that meant that there were even more PWD at the conference, attending #docday° and sharing their diabetes advocacy stories. All #dedoc° voices scholarships had been awarded to advocates from Europe because the budget wasn’t huge, and didn’t extend to flying in and accommodating people from other continents.

And then, the world changed, and flying and accommodating people at diabetes conferences didn’t matter anymore. And that meant that we could open up the scholarship program to people outside of Europe, and provide people from other parts of the world with registration to attend the EASD and ISPAD conferences. It means that mine wasn’t the only Aussie accent heard at #docday°. And it meant that people from further afield found their way to a seat at the table. These advocates – like the others I’d heard before them – were remarkable and doing remarkable things. I think perhaps the thing that has linked everyone who has been involved – wherever they are from – is their determination and desire to make things happen. It’s a common thread – that hard work and not expecting anyone to hand us opportunities that stands out.

A few years ago there was a discussion during a tweetchat about diabetes and advocacy, in particular about getting involved in advocacy efforts. In response to one of the questions posed – something do with how to get more people involved in advocacy – someone said something along the lines of ‘If someone gave me an opportunity to be an advocate, I’d take it.’ I remember being absolutely flabbergasted by that tweet, because, in my experience, that’s not how advocacy works. When I think of all the people who are visible in the diabetes advocacy space (and probably many that are not all that visible) no one was ‘given an opportunity to be an advocate’. It reminded me of the very first bloggers summit I went to at EASD in Berlin in 2012. As is usually the case when there are a group of PWD at an event together, there were questions online, asking why those people were there. Someone pointed out that it was a group of bloggers – people with diabetes who write and share their experiences about diabetes – and someone who was rather annoyed at not being invited said ‘Well, I’d like to have been invited. I don’t have a blog or write or anything, but I’d still like to be invited.’ Even then, relatively new to this all, I remember thinking ‘That’s. Not. How. This. Works’.

While no one is handing out ‘opportunities to be an advocate’, #dedoc° voices is helping in other ways. The program is open to everyone, and takes care of many of the barriers that make attending difficult. No one needs an invitation, or to be involved in a diabetes organisation, or work with industry, or to be invited. Every single person who is part of the diabetes community is welcome to apply. And if you are successful, you are given an opportunity to speak at #docday°. Actually, EVERYONE is welcome to speak at #docday°! Again, it’s just a matter of contacting the team and letting them know you are doing some great work that benefits your community.

At last night’s #docday°, I was (as I always am) in awe at what people are achieving and what they are doing. Tino from Zimbabwe is one of the most amazing advocates I’ve ever come to see, working alongside his local diabetes organisation to improve access to education in his country and beyond. Nupur, Snehal and Rohan from Blue Circle Diabetes Foundation in India are running a NFP, raising diabetes awareness with just one example of their work being a hotline they’ve set up to provide psychosocial support for PWD. And Sadia from Meethi Zindagi spoke about all the work the organisation is doing, with a special focus on the health needs of women with diabetes. We heard from Ines who built and grew a program that supports kids with diabetes to participates in sports, and Delphine who started and runs a club specialising in supporting runners and walkers with diabetes. Both women are from France and their talks last night made me put my runners today and beat the pavement around my neighbourhood! Still in France, Leonor and Nina spoke about one of the more recent additions to the #LanguageMatters movement with their new position statement.

There were others, but instead of reading about them here, why don’t you watch them. The video from the whole event is available for you to watch. I know you’ll be inspired. And I hope that if you have something you want to share you’ll think about joining in next time!

More about #docday°

docday° at EASD 2016

docday° at EASD 2017

docday° at EASD 2018

#docday° at EASD 2019

Disclosure

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

I applied for and received a press pass to attend ATTD 2021. Thanks to the Tadej Battelino and the ATTD team for making this possible to press accredited folks.

I went to my first international diabetes conference back in 2011. It was the IDF World Diabetes Congress in Dubai. In a slightly convoluted way in, I was there as a guest of the City of Melbourne. The next Congress was to be held in my home city, so the tourism arm of our local government attended the conference, talking up all that Melbourne has to offer. I was invited to go and spruik the city I love so much, encourage people to make the (very) long haul trip Down Under… and hand out little clip-on koalas while standing next to giant koalas.

After attending and getting a taste for what was on offer at one of these large-scale conferences, I realised that I wanted to be able to be involved in others moving forward. Undoubtedly, it was great professional development for me – as someone working in advocacy in a diabetes organisation – but it was also a great way to network and meet others in the advocacy space, learn about what they were doing, and work out how we could collaborate. I can’t begin to think of all the terrific projects that started in the corridors, running between sessions! And most importantly, I realised that having PWD at diabetes conferences meant that what was on show was being shared with our peers in a way that made sense. 

The struggle, of course, was getting to these conferences. Australia is a long way from anywhere and with that comes expensive travel costs. The organisations I have worked for cover maybe a max of one event per year as part of my professional development, so the rest of the time it was up to me to find a way in. Good thing I know how to hustle! In fact, that’s the way that most other PWD who attend these meetings get there. 

My disclosure statements at the end of posts detail the support I’ve received. Sometimes I’m an invited speaker so that makes covering costs easy. In recent years, research projects I’m involved with, or ad boards I’m a member of, often run meetings alongside international conferences, so my travel and some accommodation are covered. I was informed early on by other advocates that there are often satellite events run by device and pharma companies, and I became very good at begging asking for an invitation, and then following that with more begging asking for help to cover accommodation and travel costs. I know that it doesn’t come easy for lots of people to ask for money, especially when most of the time the answer is going to be no, but I’ve developed tough skin in 20 years of advocacy, and can take rejection. It just propels me to the next ask! (For the record, HCPs also do this hustle to help cover their costs. It’s not just advocates!) Another thing that has helped is my growing conviction about how critical it is – and non-negotiable – that people with diabetes are at these meetings. #NothingAboutUsWithoutUs may have started as a whisper, but now it’s a roar that comes with an expectation that we must be there, and we must be supported to get there!

Pretty much every single time I have travelled overseas to one of these meetings, I am out of pocket. Some of the costs are always borne by me. I am fortunate to be able to cover those costs, but I am fully aware that it is one of the many reasons that advocates don’t pursue attending. 

I get that there are myriad reasons that getting to these meetings is difficult. It can seem that there is no way in; there are costs to cover; time needs to be taken from work; it means leaving family; getting registration can be difficult for non-healthcare professionals. And for many, they simply have no idea how to actually make the first move to attend. It can seem daunting. I know that it can seem that it’s always the same people at these events, and I think that’s partly because once people have found out the process of getting in, they keep doing it, because they realise it’s not as daunting as they first thought! 

And so, that’s why initiatives like #dedoc° voices are so magic. It is an opportunity for all PWD to apply for a scholarship which will offer an access-all-areas pass to professional diabetes meetings. Want more details about this great program from advocacy group #dedoc°? Try here and here. The pilot for this was at ATTD in Madrid, just before the world turned upside down. It was a brilliant showcase of just how an open application process works, breaking down barriers that prevent people from attending. 

While the #dedoc° voices at ATTD in Madrid offered travel and accommodation costs, as well as registration to the conference, the other two times the initiative ran (ISPAD and EASD) were virtual events, so only registration was covered. 

And that brings us to 2021, and the first global diabetes conference for the year, ATTD, which kicks off next month. Applications for #dedoc° voices is open to PWD from all around the world now, but closes on Friday. It’s been a super short timeframe for this event, but it won’t take you too long to apply. You’ll find all the details right here

Run don’t walk, and apply now, for your change to not only get to ATTD, but also to meet diabetes advocates from across the globe. It’s your way in. What are you waiting for?

Disclosure

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

If I’m asked about the burden of diabetes stigma, a complex tree diagram starts to form in my head. There are branches sticking out at weird angles with arrows and overlapping segments and odd clusters…and I suddenly become burdened just thinking about diabetes burden!

I’ve written before many times about just how heavy diabetes can be – a dense weight that comes from the never-ending need to ‘do diabetes’ and the never-ending attempts to make sense of it all. And I’ve commented on the emotional weight that we feel when diabetes becomes overwhelming and distressing, and the burden of burnout. And I’ve also written a lot about the relentless stream of diabetes admin – and why having a personal assistant to manage my diabetes would be just so damn useful to alleviate the burden of appointment making, prescription filling, consumables stocktaking and complications screening

Burden takes on many forms. And it means different things to different people. If there is a burden spectrum, we would see people plotted all along the line. And we would move around as well. I know that there have been times I’ve feel far more burdened by diabetes, and I know that I feel so much less burdened since I’ve been using Loop because the tasks that added to that daily burden have diminished considerably. Diabetes makes a lot more sense a lot more of the time without me needing to work it out. Of course, the weight is less. 

But on top of the daily tasks and the feelings of being overwhelmed, there is still more that can contribute to burden. One of those things is stigma – the way others make us feel about diabetes – about our diabetes – can add significant burden. 

Yesterday, I tweeted this:

If you want to see an incredibly diverse and interesting discussion about how stigma has impacted people with diabetes, and parents of kids with diabetes, click on the tweet above and read the replies.  I asked the same question on my Facebook page and the stories there were equally harrowing. People’s experiences are heartbreaking. It becomes clear why people drop out of healthcare, are terrified to see HCPs, or try to hide their diabetes from others when you understand how they have been treated. 

The weight of that burden is heavy. The judgement and blame and shame can weigh us down. The emotional weight of stigma can be paralysing. 

One of the themes that is recurring when it comes to stigma discussions is the idea that we are not doing enough to look after ourselves. That could be in reference to developing long-term complications, or it could be an in-the-moment situation that someone thinks we should be better prepared for. I remember someone once criticising me for not having any jellybeans on me when I was having a hypo. I’d had three hypos already that day, and had worked through my stash. I wasn’t wilfully neglecting my diabetes by being caught short. But that was the assumption. 

Another theme is that diabetes is a character or personality flaw, brought on by not caring enough about out health. How tiring it is to have that being said when we are also trying to simply manage to live with diabetes. Weight stigma and diabetes stigma go hand in hand for many, with assumptions made left, right and centre. 

Being diagnosed with diabetes creates burden. Living with diabetes brings daily burden. Worrying about how diabetes might impact our futures crafts more burden. And stigma adds even more. It’s exhausting, hurtful and just downright unnecessary. 

More musings about diabetes and stigma

Stigma & diabetes-related complications

Owning my own contributions to diabetes-related stigma in people with type 2 diabetes. 

Where does stigma start? 

How insisting on defining diabetes when it doesn’t matter adds to stigma

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