Gosh, I love baking a cake! It’s excellent therapy, super relaxing and is one of my favourite stress busters. I can pretty much guarantee to turn out something that not only looks Instagram-pretty but will also taste divine. I’ve written before that one of the reasons I love baking so much is because it is the exact opposite of diabetes: I know precisely what I’m going to get when I follow the steps of the recipe, and know enough that when I’m making things up as I go along what works, what doesn’t and what will yield the best results. Which is the polar opposite of diabetes, where following a ‘recipe’ guarantees nothing but confusion, frustration, and a completely different result to yesterday, and making it up can mean winding up with a rollercoaster or a straight line on the CGM. No one knows. It’s a mystery. It makes no sense to anyone.
Not (any type of) diabetes on a plate.
Next week is National Diabetes Week here in Australia, and focus is going to be on diabetes-related stigma. I’ve spent a lot of time in recent weeks involved in the preparation of our campaign, listening to people with diabetes share their stories. You can check out this post on the Diabetes Australia Facebook page to see people sharing some examples of stigma they’ve experienced. It’s heartbreaking. It shouldn’t be happening.
I am very conscious that in the past I’ve probably contributed to stigma associated with type 2 diabetes. I’m horrified by it, and ashamed. I should have known better, and maybe if I’d bothered to learn from people with type 2 diabetes, I would have been more sensitive. When we blame and shame diabetes, we are blaming and shaming real people living with diabetes. I seemed to have forgotten that when I thought it was okay to demand that my diabetes was seen as the more serious diabetes, and that people make sure that they get my type of diabetes right.
And that brings me back to my cakes. And cakes in general. And comments about cakes. Especially comments about cakes being ‘diabetes on a plate’. They’re not. We all know that, right? And we all know that they are not any type of diabetes on a plate. Right?
Also not (any type of) diabetes on a plate.
And we know that when some idiot on a cooking show refers to a delectable, rich dessert as ‘diabetes on a plate’ that demanding clarification about ‘WhAt TyPe Of dIaBeTeS yOu MeAn’ is only contributing to the stigma. Right?
Right?
Stigma sucks. It really does. It makes people just want to curl up and hide from others, and hide their diabetes. It makes people feel ashamed and guilty and, really, that’s just not fun at all.
We don’t all need to love each other in the diabetes world – god knows that there are people who steer clear of me, and I am more than happy to return that favour – and we don’t need to align our advocacy efforts. But maybe we can all agree that all stigma associated with any type of diabetes is pretty nasty. That actually seems like a pretty simple thing upon which to agree.
What’s the holy grail when it comes to diabetes technology? I suspect the answer may change depending on who you ask. Different people with diabetes, different ideas of burden, different priorities. But one thing that seems to be quite universal is that people with diabetes want to do less when it comes to their diabetes, and they want tech to help with that.
Each and every week, I get asked to review or promote new apps, devices and other types of technology. Or I am asked if I can provide some feedback on an idea which has the aim of improving the life of people with diabetes.
When time permits, I’ll spend some time with developers, and I always start by asking ‘What’s your point of difference?’. I want to know that because there’s so much out there already, and if it’s just another app or program to add to the noise, why bother?
The point of difference I am always searching for is the bit that means doing less. Anything that requires more input or thought process than what is currently available, without offering benefit elsewhere seems to be a waste of time.
I want to do less for more. Surely that’s not asking too much…
For me these days, if I want to check my glucose level, I glance down at my watch. I don’t need to do anything more. Or I swipe right on my iPhone to see a little extra: the header of my Loop app (which shows current glucose level, predicted graph, IOB and battery volume).
To bolus, I either open the Loop app on my phone (two taps after waking my phone), or on my watch and go from there (one tap after waking my watch).
It takes very little effort. I don’t in any way have to stop what I am doing. And it is super inconspicuous. No one knows what I’m doing – not that I’d care. But it’s nice not to have to do something that often draws attention, or questions from others.
I have often wondered if I’ll try a Tandem t:slim pump once Control IQ is finally launched into Australia, and the one thing that is stopping me is knowing that I’d have to give up bolusing from my phone or watch.
New devices or technologies that demand more seem to be in direct contrast to PWD demanding to do less. I wrote this piece after a conference presentation about the (first gen) Medtronic hybrid-closed loop system that showed added burden from users because the system required so much extra input. The very idea that a device developed to increase automation needed users to think about it more was baffling.
DIY systems are developed by people with diabetes, or loved ones of people with diabetes. Having that skin in the game means that there is a determination to deliver not only a product that does more, better, but one that doesn’t add to diabetes burden. You will never hear the idea of ‘it’s good enough’ because to us, it never is!
But even with these goals, there still is a user burden. Cartridges don’t fill themselves; infusion sets don’t change themselves; sensors don’t insert themselves; batteries don’t replace or recharge themselves.
Which brings me to the latest toy I’ve started using, which has managed to cut a few tasks from my diabetes job list.
The diabetes DIY world continues to push the envelope with all components of systems. And the latest from a group that has been looking at the use and affordability of CGM has recently been launched (albeit in limited numbers).
Say hello to Anubis, named for the god of death and the afterlife. The group working on Anubis has worked out how to give used G6 transmitters a new life, and, quite frankly, they are far more impressive in their afterlife! Simon Lewinson from the stunning and aptly named Mt Beauty part of Victoria has led on this work. Simon is the bloke who developed a rechargeable G5 transmitter – the Fenix – which has been one of my all time favourite pieces of DTech ever. I used it continually for about three years, only stopping to trial an Anubis.
I realised just how impressive the other day when I checked the settings on my newly inserted sensor using an Anubis transmitter:
That number circled is when my sensor expires – 60 days after the sensor was inserted. What that means is that there is no need for me to do a restart after 10 days. I’m not sure how many of you reading this have tried to restart a G6 sensor, but my experience has required my husband and a butter knife, and ensuring that sensor restarts were only done when there was harmony in the home. As someone who fully self-funds CGM, I will get every single last minute of life out of a sensor, so restarts G6s up to three times.
The spouse-wielding-cutlery step has now been removed, as has the need for a two hour warm up every ten days. Now, a sensor goes in, and it keeps going until it finally just stops working. I’m not really sure how long that will be. It’s day 12 now and there’s not been a blip, and I’m super interested to know just how many days it will tick along, undisturbed and uninterrupted. I certainly don’t expect to get to 60 days, but I’ll give it a red hot go!
My Anubis is the latest device in my arsenal that is helping to chip away at all the things diabetes demands of me – things that, quite honestly, spark no joy at all. I’ve not yet found that holy grail, but compared with what else there is available to me, and what I have used before, this is better. Less work, less burden, better results. Why wouldn’t I want more of that?!
Anubis in focus on my arm, surrounded by (kindly gifted) Rockadex tape in Diabetogenic colours!
Want more information?
The Bionic Wookiee has written this terrific piece explaining the nitty gritty tech details of Anubis. My eyes usually glaze over when reading this sort of stuff, but David does a stellar job making it interesting. And understandable!
Want an Anubis? Of course you do. This is the FB page to head to. It’s a new page and there’s not much on there just yet, but it is where info will be shared.
I generally don’t do my best work at 2am. I’m just not the spring chicken I used to be, and being awake, engaging and remotely coherent when I am usually in the middle of some decent REM sleep is a big ask these days.
But living in Australia, and wanting to remain as active as possible in global diabetes work and activities has meant that I have had to suck it up and learn to get on with it. I’ve become expert at stealthily getting up about so as not to wake my family, moving like a ninja about the house. I make a pot of tea, have hypo supplies handy, and layer on red lipstick to create the illusion of being alert and awake, completely together and impossibly glamourous (I fear I am only fooling myself) before settling into do whatever it is that I am needed to do in the wee hours.
Last night, it was a 1.30am call for a 2am event. I’d snuck in a couple of hours sleep ahead of the rude alarm that woke me. When I logged onto the event platform, I still had my ‘morning voice’ on, but the hot tea helped lubricate – and wake up – my vocal cords. Thankfully I was only required to speak and not sing an opera. (Silver linings!)
But despite grumbling about the hour, I’m glad I did it. Because the following couple of hours was a discussion about hypoglycaemia that combined lived experience stories from people with diabetes, peer support, all articulated with fabulous input from clinicians and researchers. It really was an exercise in how to put together an online diabetes event!
The event was the Lilly Hypo Summit, and I co-hosted with Bastian Hauck who is an absolute pro in any hosting seat. When I was asked to be involved, I had visions of a very staged and scripted event. I have worked with industry enough to understand that their compliance rules often means that events are required to be defined to the nth degree with all content being scrutinised by legal eyes, leaving little room for spontaneity or free discussion. How could we possibly get the true experience of hypos across if we were constrained by needing to stick within a pre-planned programme? I mean, hypos don’t do that, so discussions about them surely shouldn’t have to – and simply couldn’t if we were to do it justice.
Amazingly, we managed to put together an engaging and somewhat impulsive and free-formed event with full support from the global engagement team. They trusted the PWD who were shaping the event enough to understand that what we were trying to do was be respectful to the people telling their stories by not in any way censoring them. Plus we promised no one would throw caution to the wind, and talk about replacing their traditional diabetes management with bathing under a full moon and dancing to the beat of an inner drum (or something), which considering last night was a full moon, was a pretty important promise to make. We created a space for PWD to share their stories and highlight the incredibly complex challenge that is hypoglycaemia, and we punctuated those stories with research and clinical advice.
I knew that it was going to be a good event, because the speakers were remarkable. When it was over, I had dozens and dozens of messages from people congratulating me on my hosting, but there is a secret that I feel I should share. Hosting is impossibly easy when you are interviewing brilliant people. And it was programme overflowing with brilliant people. The PWD who spoke had fascinating tales to tell, and told them in wonderfully disarming ways. I’d not met them all and it was great to be just as surprised as the audience when hearing their stories. And then we had two remarkable researchers who I respect greatly, and I know to be incredible communicators.
I really want to write more about what was discussed at the event, and will try to do that in upcoming posts, but for now, I just want to share this world cloud. We asked people to describe their hypos in one word. I’ve done exercises like this before and they never, ever reveal the same words. This is what the group came up with last night:
But to finish this post, I want to ask the question that one of last night’s HCPs, Pratik Choudhary, from the Leicester Diabetes Centre in the UK, asked us: ‘Do you see hypos as a slope or a cliff face?’ I can’t stop thinking about this, because I’ve never been asked about hypos this way, but it makes so much sense to consider them in this context. Of course, there are so many factors at play, but this either / or scenario does perfectly capture the in-the-moment way that I feel about hypos. I wonder what you might think about your hypos. Does it fit in here, or is it something completely different?
DISCLOSURE
I was an advisor to Lilly Diabetes for the Hypo Summit. I have been paid for my time. I have not been asked to write anything about the summit, but am sharing because there was so much amazing content at the event. No one has reviewed this post prior to publication.
‘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.
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.)
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.
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.
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.
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.
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!
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.
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.
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