Diabetogenic

Careful, your privilege is showing

June 24, 2021 in Advocacy, Awareness | 3 comments

‘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.

(Almost) Wordless Wednesday

June 23, 2021 in Communication, Diabetes, Social media | 1 comment

As someone who spends far too much time sharing far too many things across far too many online platforms, this Hartley Lin cartoon for the New Yorker hits far too close to home. (But it made me laugh all the same.)

CGM as a weight loss tool?

June 20, 2021 in Awareness, Devices, Diabetes, Social media, technology | 4 comments

I really wanted to call this piece ‘Hey, ableds, leave our kit alone’, but decided against it.

Over the weekend, two main things seemed to dominate diabetes twitter. The first was the suggestion from a nurse (in a now deleted tweet) that shoving cake frosting (more commonly called icing in my parts of the world) up the arse (more commonly called ass in other part of the world) of an unconscious person with diabetes was an excellent hypo treatment. The second was this picture:

Click to see where this originally appeared on Twitter

Let’s just say that sexually assaulting a PWD to give them glucose is not a good idea, no matter how hypo you think they are. Call an ambulance, rub some frosting (or honey etc.) on their gums, or, if they have glucagon with them, and you what to do with it, use that. Once again, just to be completely and utterly clear, decorating the arse of people with diabetes as if it’s a plain tea cake in need of some ready some embellishing and sprinkles, is not appropriate without consent. If everyone is conscious and there is consent, do whatever you will.

With that out of the way let’s move to the second fun little incident and that photo. That’s right, it clearly refers to one of the diabetes devices that I and many others use to keep an eye on our glucose levels because the bit of our body that takes care of it broke.

Even before this photo appeared, there has been a lot of commentary from people with diabetes (PWD) about people without diabetes (non-PWD) using any sort of glucose sensing device. I think that in coming years we’re going to only see more of it as the makers of CGMs and Flash GM start to advertise the allure of glucose tracking to a broader audience, or, as is the case with the little photo above, third party app makers jump on board.

Because the diabetes community never has one united opinion on things, (although I’m yet to have heard from a PWD who has thought the icing-up-the-bum-for-hypo-treatment idea is a good one), some people are violently opposed to the idea of non-PWD using CGM. Others couldn’t be less fussed about it if they tried. And some actually think it’s great. There is no one way to respond, and everyone’s feelings are valid.

I have a lot of feelings wondering why non-PWD would want to do diabetes. From hypo simulators, to wearing a pump with saline in it, and lining up to get an A1c checked for fun – I’ve seen it, and I’ve written about it. Again, no one needs to agree with my feelings, although it seems from the feedback I get, a lot of people do.

But I have to say that the idea of CGMs as a weight loss tool was a new one for me. I understand that some people who are deep into the keto way of life use them, but my understanding of this is so they can repeatedly prove to themselves (and badger others) that eating meat causes minimal changes to glucose levels, but eating grains of rice make lines move.

I did a bit of a deep dive into the company behind this picture, (they are not the only one that is moving to capitalise on the excitement and interest around biohacking) and all I could find was a whole lot of pseudo-science speak that just screams scam to me! It preys on the insecurities of those who are trying to find happiness in the latest and greatest wellness fad. But this time, they claim to have science on their side.

This isn’t new. Weight loss cons from ‘teatoxes’ to fat-busting pills to miracle diets to superfood super-promises, have been around for years. There is a reason that new players come onto the market every week, and that reason is not because they work. It’s because we have diet industry worth billions, we have people – often young girls – being told their worth is tied up in the number on their scales, and we have people desperately looking for something that will work to get them to that number, and get them there quickly.

To explain their claims, they use science-speak to suggest that there is a medical side to what they are doing. It seems that the ‘trust me, I’m a doctor’ line works well for a lot of people. As do the words around graphs, data and glucose statistics. That might work for people who haven’t spent a shedload of time around doctors talking about graphs, data and glucose stats, but those of us who do, might see this as a load of bullshit.

This, directly from the company’s website claims that the app ‘…provides an immersive experience that shows you a continuous line graph of your glucose data; provides alerts when glucose spikes or dips out of your weight-loss range’.

Weight-loss range? I really don’t understand what that means because the only time my glucose levels have equalled weight loss is when they have been off-the-charts high. Such as before I was diagnosed with diabetes, and the time I was in DKA thanks to gastro. I doubt that the idea is to somehow send people without insulin-requiring diabetes in DKA, because that is going to take a lot more than just banging a sensor on your arm, and loading an app onto your iPhone.

Of course, that’s not what they mean. They are suggesting that by keeping glucose levels withing a tight range (the ‘weight-loss range’), there will be no excess glucose needing to be stored as fat.

There is limited evidence to support that measuring glucose levels on non-PWD is beneficial, so the science is shaky to say the least. But that doesn’t stop the program being presented as super science-y and evidence-based. And for a lot of people, that illusion of science means they think that the subscription cost (because there’s always a subscription cost!) is worth it.

But let’s move away from that for a moment, let’s ignore the lack of science, the cost and the hint that this could be nothing more than a money-making scam, targeting vulnerable people, because there is more that comes into play which explains why so many in the diabetes community push back at non-PWD wearing diabetes devices.

Continuous glucose monitors were created for people with diabetes to better manage our condition. They give us access data that helps managing our diabetes like never before. They are life changing. They are life saving. They are also only available to a small percentage of the global diabetes population. I haven’t even touched on the fact that generally, it’s only people with type 1 diabetes who have access. People with other types of diabetes are even less likely to be able to get subsidised or funded CGM, even though many of them might benefit from using them.

The idea that CGMS are toys of privileged biohackers, and being used exclusively as a weight-loss tool does not sit well with many. It does not sit well with me. If I look at Australia, only half of people with type 1 diabetes have subsidised access to CGM. The rest of us are left to having to find about $4K per year to fund the devices that really make a difference to our lives, that some of us say we couldn’t live without.

The weight-loss focus from this particular company is problematic when considering the higher rates of disordered eating, and insulin omission or restriction in people with diabetes for the purposes of weight loss. Some claimed that seeing CGMs heralded as being about weight loss, when they are using it as part of their eating disorder recovery was triggering. These factors all come into play within the diabetes community.

And finally, the idea that increasing use to a far broader community will bring down the cost…? Let’s just be reasonable about that (or sceptical…) and say that’s not going to happen. If that was the case, the fact that every keto-follower worth their ketosis now regularly checks their ketones, would mean that blood keto strips would be cheap as chips. That’s not the case at all.

The potential of medical devices being used outside of the reason they were created is likely to be explored a lot more in coming years. With (non-healthcare) tech companies moving into the space, it is not only possible, but highly likely, that glucose sensing (albeit non-invasive) will become standard on wearables, in the same way step counters have. But we’re not there yet. Right now, the best use of these devices is where the evidence points – on the arms (or bellies, or thighs, or wherever!) people with diabetes are wearing them, to assist with diabetes management, to help us with our decision-making process, and to improve our lives.

NOTE:

In this piece, I mean ALL people with ALL types of diabetes, including pre-diabetes. Basically, any condition that means an individual needs to consider glucose levels.

One step closer

June 17, 2021 in Diabetes, Real life | 1 comment

Today, I had my second COVID jab. I feel grateful, happy, relieved. I recognise how privileged I am to be living somewhere where I was able to access the vaccine. And I feel lucky. My tee wasn’t a deliberate choice when I threw it on this morning, but jeez, it sure does feel appropriate right about now.*

I also feel…

One step closer to not being so anxious.

One step closer to not worrying all the time.

One step closer to not calculating how close someone is standing.

One step closer to avoiding lockdowns.

One step closer to not having to check in everywhere we go.

One step closer to not thinking every sniffle, every cough is a sign of something more sinister than just a sniffle, just a cough.

One step closer to stressing less about my parents getting the virus.

One step closer to walking into places without first counting how many others are there.

One step closer to being free to meet up with friends in crowded bars.

One step closer to not assessing risk at every step, every move, every breath.

One step closer to not scrutinising testing numbers, vaccination numbers, virus numbers.

One step closer to borders opening.

One step closer to crossing borders.

One step closer to the Qantas Business lounge.

One step closer to getting on an aeroplane.

One step closer to walking the streets of New York.

One step closer to hearing Mike Stern at the 55 Bar on a Monday night.

One step closer to cinnamon buns in Copenhagen.

One step closer to more in-person diabetes peer support.

One step closer to presenting on a stage instead of a zoom room.

One step closer to IRL #docday°.

One step closer to hugging friends from far flung places.

One step closer to thanking my squad in person for keeping me going.

One step closer to kisses on the cheeks say hello.

One step closer to not having to get up at least once a week for 3am meetings for projects run outside of Australia.

One step closer to walking the halls of diabetes conferences again.

One step closer to this being over.

One step closer to life as we knew it, even if it will never be the same again.

*My tee wasn’t a deliberate choice when I threw it on this morning, and it wasn’t until I was on my way to getting my jab that I really though about it. There’s a story to that tee, and today, it feels pretty special.

In January 2020, I was in my favourite store in Melbourne (shout out to Sian at RMP Melbourne), and there, on the racks, was a white t-shirt, from Rabens Saloner, with ‘Lucky one’ printed across the front. Startled, I took in a sharp breath and lifted the shirt from it’s hanger, holding it up to me. And I flashed back the last day of EASD in Barcelona just a few months earlier, remembering…

I remembered how on that last day of the conference, walking between the hotel and the conference centre, I saw a stencil of the words ‘Lucky One’, the paint dripping from the words. It was on a concrete wall with nothing else around it. It summed up perfectly how I was feeling, so I snapped a pic to remind me.

Here is that photo…

Diabetes IS an opinion

June 15, 2021 in Diabetes, Food, Real life | 1 comment

Trawling Instagram today, this jumped out at me:

Click to be taken to @Papelito.Studio on Instagram

This is a fact. No correspondence will be entered into. It doesn’t matter if you like it some other way. There is no ‘But I like it with parsley’ or ‘I substituted chicken for the guanciale’, or ‘It tastes better with cream’. Because no. No, it does not. Or, if you believe it does, that’s fine, but what you have cooked is not carbonara. You’ve made up something different. Enjoy. Just don’t call it carbonara.

Italians are very strict with their food rules. Which is hysterical, because in my experience (from, you know, my own family), Italians generally don’t really like rules all that much. I remember hearing about a time when there was a lucrative cottage industry in Italy of tee-shirts with diagonal black lines across the front for people to wear instead of buckling up when seatbelts became mandatory. I am, in equal measure, amused, astonished and appalled at the audacity of it all (and alliterative too).

Anyway, back to carbonara. The ingredients for the recipe are not open to negotiation. If you want to make it for dinner tonight, you need eggs, guanciale, pecorino, black pepper and bucatini. È tutto!

Thank fuck diabetes isn’t that rigid!

I break rules, ignore rules and make up rules all the live-long day. Because that’s how I do it. Diabetes is an opinion. Work out yours, change it as you like, add different things, or change change them out. And go for it. And don’t let anyone – even loud, passionate Italians – tell you otherwise.

Totally irrelevant postscript of my favourite ever story of Italians breaking rules (which, by the way, I think would make a brilliant series)

Years ago, while in a very long queue at the Santa Maria de Monserrat monastery, Aaron and I got chatting to a nonna-aged Italian woman. After five minutes, she’d had enough, announced that Italians don’t queue and pushed her way to the front, ignoring the stern rules that were clear to everyone else. She returned ten minutes later to tell us the statue was a gorgeous sight, and that we were stupid for not following her. Two hours later, while still diligently lining up, we realised she was right.

Out there

June 11, 2021 in Community, Devices, Diabetes, DOC, Peer support, Pumps, Real life | 2 comments

Last night, my gorgeous friend Andrea tweeted how she had seen someone wearing a CGM on the streets of Paris. When she rolled up her sleeve to show him her matching device, he turned and walked away. ‘Guess you can’t be best friends with every T1D’, she wrote. ‘Diabetes in the Wild’ stories have been DOC discussion fodder for decades – including wonderful stories of friendships being started by a chance encounter, and less wonderful stories such as Andrea’s most recent encounter. I was reminded of the many, many times pure happenstance of random diabetes connection has happened to me.

There was the time I was waiting for coffee and another person in line noticed my Dexcom alarm wailing, and the banter we fell into was so comfortable – as if we’d known each other forever!

And that time that someone working the till at a burger flashed her CGM at me after seeing mine on my arm and we chatted about being diagnosed as young adults and the challenges that poses.

Standing in line, queuing for gelato, is as good as any place to meet a fellow traveller and talk about diabetes, right? That’s what happened here.

And this time where I spotted a pump on the waistband of a young woman with diabetes, and started chatting with her and her mother. The mum did that thing that parents of kids with diabetes sometimes do – looking for a glimpse into her child’s future. She saw that in my child, who was eagerly listening to the exchange. But I walked away from that discussion with more than I could have given – I remember feeling so connected to the diabetes world in that moment, which I needed so much at the time.

I bet that the woman in the loos at Madison Square Garden wasn’t expecting the person who walked in at the exact moment she was giving herself an insulin injection to be another woman with diabetes. But yeah, that happened…

I’ll never forget this time that I was milliseconds from abusing a man catcalling me out his car window, until I realised he was yelling out at to show me not only our matching CGMs, but also the matching Rockadex tape around it. My reaction then was ridiculous squealing and jumping up and down!

Airports have been a fruitful place to ‘spot diabetes’, such as the time my phone case started a discussion with a woman whose daughter has diabetes, except we didn’t really talk about diabetes. And the time another mum of a kid with diabetes was the security officer I was directed to at Amsterdam’s Schiphol Airport. She was super relaxed about all my diabetes kit, casting her eyes over it casually while telling me about her teenage son with diabetes.

The follow up to this time – where I introduced myself to the young mum at the next time who I overheard speaking about Libre, and saying how she was confused about how it worked and how to access it – but not really being all that sure about it, is that she contacted me to let me know that she’d spoken with their HCP about it, had trialled it and was now using it full time. She told me that managing diabetes with toddler twins was a nightmare, and this made things just a little easier.

Sometimes, seeing a stranger with diabetes doesn’t start a conversation. It can just an acknowledgment, like this time at a jazz club in Melbourne. And this time on a flight where we talked about the Rolling Stones, but didn’t ‘out ourselves’ as pancreatically challenged, even though we knew …

But perhaps my favourite ‘Diabetes in the Wild’ story is one that, although I was involved, I didn’t write about. Kerri Sparling wrote about it on her blog, Six Until Me. Kerri was in Melbourne to speak at an event I was organising, and one morning, we met at a café near my work. We sat outside drinking our coffees, chatting away at a million miles an hour, as we do, when we noticed a woman at the next table watching us carefully. We said hi, and she said that she couldn’t help listening to us after she heard us mention diabetes. She told is her little girl – who was sitting beside her, and was covered in babycino – had recently been diagnosed. I will never forget the look on the mother’s face as two complete strangers chatted with her about our lives with diabetes, desperately wanting her to know that there were people out there she could connect with. I also remember walking away, hoping that she would be okay.

Five years later, I found out she was okay – after another chance encounter. I was contacting people to do a story for Diabetes Australia and messaged a woman I didn’t know to see if she, along with her primary aged school daughter would be open to answering some questions. Turns out, this was the woman from Kerri’s and my café encounter. She told me how that random, in the wild conversation made her feel so encouraged. She said that chance meeting was the first time she’d met anyone else with diabetes. And that hearing us talk, and learning about our lives had given her hope at a time when she was feeling just so overwhelmed.

I know that not everyone wants to be accosted by strangers to talk about their health, and of course, I fully respect that. I also know there are times that I find it a little confronting to be asked about the devices attached to my body. But I also know that not once when I’ve approached someone, or once when someone has approached me has there been anything other than a warm exchange. I so often hear from others that those moments of accidental peer support have only been positive, and perhaps had they not, we’d all stop doing it. It’s a calculated risk trying to start a conversation with a stranger, and I do tread very lightly. But I think back to so many people in the wild stories – the ones I’ve been involved in, and ones shared by others – and I think about what people say they got out of them and how, in some cases they were life changing. A feeling of being connected. The delight in seeing someone wearing matching kit. The relief of seeing that we are so alone. The sharing of silly stories, and funny anecdotes. And in the case of that mum with a newly diagnosed little kid, hope.

Devices on arms make spotting diabetes in the wild a little easier. This beautiful design is from Jenna at @TypeOneVibes. Click to go to her Instagram page.

Today’s post is dedicated to Andrea whose tweet kicked off this conversation in the DOC last yesterday. Thanks for reminding me about all these wonderful chance meetings, my friend.

Costly

June 9, 2021 in Advocacy, Awareness, Diabetes | 4 comments

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.

Docday at ATTD2021

June 4, 2021 in Advocacy, Awareness, Community, Conferences, Diabetes, DOC, Engagement, Peer support, Social media | 2 comments

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.

Revisited: Sorry no more

June 1, 2021 in Diabetes, Real life, Reblog | 2 comments

I searched for this blog post the other day after a Zoom catch up with a diabetes friend who mentioned that they were feeling really guilty because diabetes seemed to impact so much on those around her.

It’s hard to not feel that guilt, and when we feel guilty we often apologise. Apologising for diabetes is like apologising for lousy weather on a day we planned a garden party. We didn’t cause the rain. We didn’t cause our diabetes, or the parts of it that interrupt our day and mess up our plans.

I sent this post to my friend and she called me straight away to say that it helped her understand that she doesn’t need to constantly say sorry when diabetes throws a spanner into the works. It’s a hard habit to break. I realised that it was four years ago I resolutely wrote this post, mostly as a reminder to myself. I wish I could say that I’ve managed to nail it and have stopped apologising for diabetes being an inconvenience. But I’d be lying if I suggested I get it right all the time – perhaps I just need a prompt every now and then.

And if anyone else needs a reminder too, here it is for you…

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Recently, I heard myself saying to a friend with diabetes that she really didn’t need to – and shouldn’t – apologise for diabetes, specifically, for needing to stop to check her BGL while we were mid-conversation.

‘Don’t apologise,’ I said to her. ‘It’s just part and parcel of diabetes.’

And then, I heard how often I do it.

‘Sorry – I just need to treat this low.’

‘Sorry, darling. Would you mind just grabbing me a juice box from over there?’

‘Sorry – I had a lousy night with crap high BGLs and hardly slept. Would you mind repeating what you said? I missed it. Sorry.’

‘Sorry – my pump is wailing at me. Let me just see what it wants.’

‘Sorry – my CGM is alarming. I need to calibrate…hang on a sec…’

‘Damn. I’m out of insulin. Sorry. I just need to refill my pump.’

‘Sorry for munching on these glucose tabs. I’m okay – just trying to ward of a low.’

‘Sorry. My brain is foggy! I think I might be low….’

Sorry. Sorry. Sorry. Sorry. Sorry. Sorry. Sorry. Sorry…

Why am I apologising for my messed up beta cells? I didn’t destroy them. (Actually – technically I guess that’s not true. My own body did kill them off. But it wasn’t deliberate on my part…This is all getting rather confusing, so let’s just agree that it’s not my fault that I have diabetes.)

Why do I say sorry for having to treat or manage or address the health condition I live with all day, every day, and do things that I only do to keep me well…and alive?

I’m not alone here. Many others do the same. I’ve sat in rooms with friends having nasty lows and heard them apologise over and over again as they treat and will their glucose levels to rise. We do it amongst ‘friends’ – others from our pancreatically challenged tribe who get it better than anyone else, and we do it with those who are not living with it.

When I apologise for my diabetes, I am making it sound like I have done something wrong – intentionally or accidentally. And that is never the case. I’ve never intentionally been low or high. And even if it could be considered an accident or something I could have prevented – perhaps over- or under-bolusing or forgetting to refill my reservoir before leaving home – it was never done with the aim of being disruptive to others. Or myself for that matter.

What I am also doing is apologising for diabetes inconveniencing others. And I am also saying it is something shameful. But I can’t do anything about having diabetes. And it is not shameful. I am certainly not ashamed of having diabetes.

I wonder if it is a case of good manners going too far. Manners are very important to me – I have instilled this in our kidlet who is frequently complimented for her beautiful manners. But manners are about courtesy and respect – and that respect is for yourself as much as others. I think I am actually being quite disrespectful to myself when I apologise for having to ‘do diabetes’.

My body, which really doesn’t like itself, is not a reason for me to say sorry. I do enough managing diabetes without having to feel the need to repent all the time. So I’m not saying sorry anymore. Well, I’m going to try, anyway!

Revisited: The joy – and privilege – of ageing

May 24, 2021 in Health, Real life, Reblog | 4 comments

I can’t believe I wrote this piece almost seven years ago. I had turned 40 the year before and as often happens around the occasion of ‘big’ birthdays, I’d started to think about just what getting older means. I didn’t seem to have any feelings of regret or stress that I was ageing though, I was fully embracing just where I was going, the wisdom that I felt, and the absolute excitement of what was coming next. Seven years later, I can see that I was right to feel that way.

At the moment, I’m spending time thinking and reading about menopause and I’m lost in language that is tied up with this ‘next stage’. There seems to be so much loss, regret, and looking back, and feeling scared about what people are losing and leaving behind as the next stage of life hits. But I don’t feel that way. I feel that I can look back with pride and achievement and happiness and pain and love and hurt and longing. There are things I wish I had done differently, but nothing I wish I hadn’t done. I don’t want do-overs. Looking ahead, there is just more to look forward to, possibilities that I have no idea about yet.

This year, with so much about insulin’s centenary, thinking about getting older seems more poignant. Because a short century ago, diabetes was a death sentence. Ageing was only something we could even dream about. What a privilege to wear my age in years alongside my age in diabetes!

And so today, I’m sharing these words from 14 October 2014 (with a few edits) because they still ring true for me. They still feel real. And in seven years time, I’m hoping I revisit this post again, and feel the same way.

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I really should be careful what I read and where I read it! The other day I sat at a gate lounge at Sydney Airport crying as I read an incredibly candid piece on the Huffington Post that inexplicably told my story so honestly and accurately that I wondered if I had written it and not remembered.

And then I read this piece by Rebecca Sparrow and again, floods of tears as I nodded at everything she wrote.

I remember one day sitting with a group of other women all around the same age and we were speaking about skin care products ~~(and then we giggled about boys, plaited each other’s hair and painted our toe nails)~~. I was the only one who had not been using so-called anti-ageing products for a number of years. Because that’s the thing – we’re meant to be anti-ageing and do things to turn back the clock.

I am forty years old. (EDIT: forty-seven) This is not something I feel the need to hide nor be ashamed of. I celebrated last year with a week of parties and lovely gifts. I wanted to celebrate this milestone – just as I do every milestone. Next month, I turn 41 and have every intention of celebrating that too.

Rebecca Sparrow writes that ageing and getting older is a privilege as she tells the story of a friend of hers who, at 22 years has been diagnosed with terminal cancer. This young woman is not going to be afforded the opportunity to age and get wrinkly and turn grey. She is going to die at an age where most of us feel completely immortal.

Ageing is a privilege – I understand that more and more every day. With our daughter growing up – she’s going to be 10 next month – I can easily measure time. We see how she has changed and how, with each passing month, she is becoming an incredible young girl we are so proud of. And we are so lucky to be able to watch this.

I am over the idea that ageing is something that we should hide from and do everything in our power to avoid. I am forty years old. I look older than I did when I was 17 and doing year 12, or when I was 25, or when I was 30 and pregnant, or even than I did a couple of years ago. Of course I do. And if truth be known, I really don’t want to turn back the clock – on how I look physically or how I feel emotionally. With age comes wisdom – it may be a cliché, but it is true. But even more – with age comes experiences and confidence and a sense of self that only seems to grow each year.

Ageing is a privilege. It is normal. And devastatingly, for some, they never will age.

Less than 100 years ago, being diagnosed with type 1 diabetes was a death sentence. Think about that for a moment. If I had have been diagnosed prior to insulin being available, I would have died before I was 25 years old. I never would have travelled, worked in a job that gives me incredible joy, spent so much time with friends and family, seen Tony Bennett live, learnt what an octothorpe is, watched the West Wing, attended my 20 year school reunion – or my 10 year school reunion for that matter, danced on the turf of the MCG as The Police sang, seen the Book of Mormon, read Harry Potter, gone to (and fallen in love with) New York City, met Oliver Jeffers, used an iPhone, gotten married or had a daughter. (2021 EDIT: AND …revisited and revisited and revisited New York, watched my girl turn into the most amazing almost-adult, stood on the stage at conferences around the world, extolling the value of the lived experience, stood alongside three amazing women as we put together the fantastic programme for the 2019 IDF Congress, Living with Diabetes stream, celebrated 20 years of marriage, road tripped across the US with Aaron, visited Graceland, sat in ABBA’s Arrival helicopter, ‘built’ my own pancreas, gone back to Paris another few times, and finally been able to sit on the grass at Place des Vosges, taken my family to Friends for Life, seen the language matters movement grow from the seed we planted into a global movement, lived through (and continue to…) a pandemic…)

My life would have ended before any of these things. Just because I’d been diagnosed with type 1 diabetes. Which makes me understand and feel the privilege of ageing more and more. Every diaversary, every diabetes milestone is worth celebrating.

I want to look forty (EDIT: forty-seven) – I want every battle scar I’ve earned to be visible; every success – and every failure – to be shown on my face; the story of every victory and disappointment to be told. Because these are part of who I am and I am so, so lucky to be here to keep telling my story.