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Gosh, there’s lots in the #DOC-iverse (#DOC-osphere?) about seeing diabetes, isn’t there? Yes, yes there is. Not sure about you, but I seem to be seeing a lot of bright, shiny, happy people (and a pop star or model or two) talking about diabetes, when usually they are pretty quiet about the whole diabetes thing. Which is fine. No one needs to spend their time advocating all about diabetes every minute of the day.
But I wonder if any of the marketing boffins who threw together their messages of inspiration bothered to check to see what the International Diabetes Federation are up to for World Diabetes Day on 14 November. Afterall, that’s the showstopper event of the month, isn’t it? Celebrating the birthday of the bloke who I give thanks to every day for keeping me alive.
A bit of history about World Diabetes Day to help understand that it’s not just about privileged folks with diabetes showing off their high-tech gadgets strapped to their impossibly beautiful bodies. (And yes, I know I sound like the Grinch who stole World Diabetes Day, but I think that understanding the foundation of this day is kind of important because that all seems to get swallowed up in PR spin.)
World Diabetes Day means something. In 2006, it became an official United Nations Day thanks to United Nations Resolution 61/225. At the time it was one of only two official UN health days. But even before that, World Diabetes Day had been going on for some time. It was in 1991 that the IDF, together with the World Health Organisation, created World Diabetes Day in response to growing concerns about diabetes.
Over the last thirty years, World Diabetes Day themes have aimed to be inclusive of people from around the globe, but perhaps there has been a (necessary) focus on how to improve diabetes outcomes for people in under-resourced countries. Maybe that’s why I find it a little galling when it appears that the day is about showing off your latest diabetes kit or shouting to the globe about how diabetes doesn’t stop people reaching their dreams. I love positivity and I’m often accused of being far too Pollyanna for my own good, but having a good look beyond our own privilege is important if we’re trying to get across a global idea of what is going on in the world of diabetes.
This year the theme is ‘Access to care: if not now, when?’. The World Diabetes Day website is full of resources that explain the theme. There are materials you can share to help explain just what access means to different people.
It all seems to be a little bit of a throwback to community initiatives of the past. The diabetes community has been the creators of some absolutely stellar campaigns – ideas that seem to have been founded in similar frustrations about which I’m smashing on my keyboard today. In 2014 there was a campaign that asked us to ‘Put the World back in WDD’ which was in response to there being a very Western focus on World Diabetes Day. Sometimes it feels that some things never change. The #Insulin4All hashtag that was first used to highlight how people in under-resourced countries struggle to access insulin is now most often linked with insulin pricing in the US.
Access means different things to different people, and the materials the IDF has put together consider this. Even if you live in a well-resourced country, with decent subsidised, tax-payer funded (never free!) healthcare, it’s likely that some part of your diabetes care is still difficult to access. It may not be insulin or diabetes supplies that are your access issue – it could be mental health support or different tech solutions.
Here in Australia, thanks to Medicare, the PBS and the NDSS, we have well-subsidised diabetes care. It’s not perfect, but it is certainly better than I hear from friends in other places around the world. But there definitely are still deficiencies in our care. Mental health care is limited – and almost impossible, it seems, to access. Only 50% of people with type 1 diabetes can access subsidised CGM and Flash GM through the NDSS. People in rural and remote areas of the country have far more difficulty accessing quality, regular diabetes care. The outcomes for Indigenous Australians with diabetes fall far behind. As always, people who are disadvantaged in some way are disproportionately affected, and face more difficulties accessing the care they need.
How you choose to celebrate (or not) this month and World Diabetes Day is entirely up to you. You may choose to ignore the ‘official’ theme of the day and focus more on other initiatives and once again, all perfectly okay. Just as YDMV, so may your diabetes advocacy.
But if you are interested in focusing more on access, have a look at the World Diabetes Day website and pledge your support for greater access to diabetes care. Read about the Resolution that was adopted by United Nations Member States that calls for urgent, coordinated global action on diabetes.
Look, I know. UN Resolutions don’t sound nearly as sexy as a six pack with a CGM plastered to it, but it is pretty cool that the WHO and the UN are talking diabetes.
And while celebrating the centenary of insulin, learn where insulin is not easy to come by, and why that is. Through volunteer work supporting both Life for a Child and Insulin for Life, I have learnt a lot about the challenges faced by people with diabetes in under-resourced countries. If you can, please consider making a donation this month to either, or both, charities.
And if looking to the community, it’s wonderful to know that there will be a docday° event on World Diabetes Day that is dedicated to the theme of access. You can learn more about that event here. It’s free to join, and will be live streamed on Facebook – you don’t even need to sign up.
But perhaps a final thought. How great would it be if those with really, massively high followings, (and followings not-only-in-the-diabetes-community), used this time to talk about making a real difference – a difference to people with diabetes who are struggling to access the basic drugs and supplies to actually live with the condition.
Sure, ‘seeing diabetes’ helps raise awareness, but as ever, I ask how much of that actually cuts through and gets out of the community that is already seeing diabetes every single minute of every single day?
Happy World Diabetes Day to you all. This year, the IDF is building on last year’s theme about diabetes and the family.
I wrote this last year, which explained how my diabetes family extends beyond my immediate family. It includes my friends living with diabetes – the diabetes tribe that I found and love so hard. I know that without them, there is no way that I would be living the diabetes life I have now. This tribe of PWD is spread across the globe, but is literally at my fingertips anytime I need them. A day does not go by when we are not messaging about the saucy goings on in the diabetes world.
Tribe
Everyone’s diabetes family looks different. While for some it is their partner, kids, parents and extended family, for others it may include their friends, healthcare team, local diabetes organisation or next-door neighbour. You do you when finding your tribe! Here’s a collage of just some of the tribe I’ve been lucky enough to see this year.
The greatest thing my own tiny little family unit – Aaron and the kidlet – have done for me with my diabetes is to let me do it my way. Aaron was there the moment I was diagnosed, and not once in the last twenty-one years has he tried to make diabetes about him. He will never know how grateful I am for that. Those middle of the night hypos where he was awake alongside me, toasting bread or pouring juice, or the hospital visits or the days interrupted by misbehaving glucose levels were done with not a single mention of how he has been impacted by my diabetes. I never heard him say how exhausted he was the morning after a particularly wakeful night, or how my diabetes has affected him.
But perhaps the greatest support that my family has given me is never making me feel limited by diabetes. Building independence when living with a chronic health condition isn’t only something that is relevant to children and adolescence. Last night, I slept alone in a hotel room and didn’t for a moment feel fear because of my diabetes. I travel the world alone for work – jump on long haul flights, spend twenty-hour days at conferences and day-long meetings – and I do that with complete and utter confidence that I can manage my diabetes alone.
I hear others with diabetes say that their loved ones are worried and fearful when they are away from them, and that in turn makes them feel nervous. I hear of struggles of how to share CGM data constructively and how much others get to be involved in the PWD’s diabetes life. It’s a delicate dance we do here, and Aaron and the kidlet have always been led by what I need. And what I need is not to feel fragile or as though I could break at any moment if they are not there.
I love that they don’t limit me in any way because of my diabetes. And I love that they trust me enough to know that I will reach out when I need to, and that when they ask and ask and ask, all that does is make me feel like a burden. And I love that they never, ever make diabetes about them.
So, they’re the stories that I’m looking for today – the stories of people with diabetes, showing how they have been supported to do their very best. And at the same time, I’m sending a thank you out to these two for supporting me in exactly the way I need.
My people
All diabetes sucks. That is, in my opinion, just the way that diabetes is. No type of diabetes is better or worse than another; no-one has the ‘bad’ type (because, seriously, there is no ‘good’ type!). No one asks to get diabetes, and when diagnosed, we all need adequate care, support and access to the right treatment, therapies and technologies.
Hopefully, we are all on the same page so far.
As it turns out, diabetes doesn’t discriminate. You can be poor, rich, thin, fat, old, young, smart, not-so smart, run marathons, spend all day binge-watching Netflix, vegan, carnivore, Gryffindor, Slytherin, Hufflepuff or Ravenclaw. Doesn’t matter. Those handing out diabetes cards don’t care. Sure, there are some non-modifiable risk factors that put you at an increased change of getting diabetes, but even then, there are no guarantees.
It’s a wild card condition and it’s crap all around if that’s the card you’re dealt.
Sure, there are differences between the (many, many, many) different types of diabetes. I believe that we should all have a complete and utter picture of our own diabetes diagnosis – we should know which type we have, understand all treatment options available and be supported in whatever we choose to manage best our diabetes. While I don’t, and will never, subscribe to the idea of changing the name of type 1 diabetes, I do believe that people have a right to know which condition they have, because a diagnosis of a particular type comes with other health implications.
But for all the differences, there are a shit load of similarities, and that’s what I am for on World Diabetes Day this year.
I’m for access to care
I don’t care what kind of diabetes you have; you absolutely do deserve to receive care that provides you with current, evidence-based information, targeted to your own diabetes management. I’m for being able to choose the right healthcare professional for you, in the setting that works best.
I’m for the right diabetes technology for the right person at the right time
Diabetes technology is not the be all, end all and won’t eliminate all diabetes burden. But it is a useful management tool, and I support the right to all people with diabetes being informed and able to access the technology that works best for them. I’m for HCPs understanding that there is no one size fits all when it comes to tech, and to them not being the gatekeepers to the tech we want to use.
I’m for user-led innovation
#WeAreNotWaiting for a reason. No one appreciates just what we need from our technology like those of us using it and that is why the DIY diabetes movement is gaining momentum every day. We don’t need anyone to approve what we do, we just need our HCPs to support our choice.
I’m for kindness in diabetes care
Regardless of the type of diabetes, everyone should be treated respectfully, kindly and without bias. I’m for healthcare professionals who work with us to do our best, who understand how challenging diabetes is and acknowledge our efforts, and are allies.
I’m for no judgement
No one should be judged because they have diabetes. I don’t care what kind of diabetes you have; no one deserves to be blamed or shamed for it, or for what comes after a diagnosis. If you have type 2 diabetes, you didn’t bring that on yourself, any more than a person with any type of diabetes brought on any diabetes-related complications.
I’m for funding research
Research is critical when it comes to helping us live longer, better, happier lives with diabetes and there are simply not enough research funds dedicated to diabetes. Research should be all encompassing, considering all aspects of life with diabetes, including (or maybe even especially) the emotional and behavioural side of life with diabetes.
I’m for mental health support
Diabetes is not just about numbers and everyone with diabetes should be offered and able to access a psychologist if they need or want it. Feeling overwhelmed, burnt out, over it, unable to cope, miserable, grief or anger about diabetes is perfectly normal, but you need a way to understand it, and help you live with those feelings. It’s impossible to do it alone.
I’m for peer support
Peer support is a brilliant and can be one of the most useful ways to help us live well with diabetes. It should be available to anyone who wants it. Finding your tribe can be difficult, so understanding where to look, and how to connect is important.
I’m for being united
Yes – there are different types of diabetes and it’s okay to identify as having a specific type. I have type 1 diabetes – that’s my reality. But defending one type, by throwing under the bus is not okay. We can have conversations about the different diabetes without doing that. This is often really evident in the online community, including by some HCPs who actually add to diabetes stigma in the way they jump on the Daily Mail/Channel 10 news/annoying shock jock when they say something completely wrong about diabetes. (Really. When a crappy shock jock makes some comment about people with diabetes just needing to eat better and be more active, responding with ‘Please specify that you mean type 2’ only perpetuates the myth that type 2 diabetes is all about lifestyle. You are adding to the stigma when you do that.)
We can all have a focus, and no one needs to be told what they should be advocating for. Just don’t do it to the detriment of a different type.
I’m for accurate reporting of diabetes
So, further to my previous point: Media, do better. Really. Stop the stigma; stop the sensationalism. Report accurately and factually. And use images that don’t feed into the myths of diabetes. We can’t make it any easier for you – the Diabetes Australia Language Position Statement even has a handy table that is the most perfect guide for you to use when speaking/writing to and about people with diabetes.
I’m for listening to people with diabetes
If the voices of those of us living with diabetes are not the loudest in the conversation, something is wrong. People with diabetes have the answers a lot of the time, we just don’t get a forum to share them. But when we do, listen to us. You don’t get to challenge our personal experiences and tell us that we are wrong, or that things are getting better so we should be grateful, or that it could be worse. Listen and learn.
I’m for #LanguageMatters
The words we use and the way we use them shape attitudes and attitudes of those around us create our diabetes reality. When we have people using thoughtful words, backed up with thoughtful attitudes, supporting and encouraging us, we do better. And conversely when we hear words that are negative and blaming, we can be paralysed into inactivity. #LanguageMatters because it shapes how we see our own diabetes.
I’m for smashing stigma
Diabetes stigma sucks. It can be absolutely paralysing for some people, sending us into inactivity when it comes to dealing with our diabetes, fearing what people with think of, or say to us. Every word you say about diabetes affects us, so use words that don’t stigmatise.
I’m for #TypeAll…
…because we are stronger when we are united. It’s that simple. There are millions and millions of people with diabetes – we have critical mass. If we all came together demanding better care, better access, a stop to the blame and shame and stigma, imagine just how powerful we could be.
The theme of this year’s WDD is once again diabetes and the family, and while my own immediate family is a huge support, walking alongside my diabetes life, I want to broaden the definition of family to include every single person living with diabetes. You are all my family, and families work best when they stick together.
With Diabetes Awareness Month in full swing, many of us will have seen the JDRF’s Type 1 Diabetes Footprintflash up on our SoMe feeds as diabetes friends show just some of the ways diabetes has impacted our lives.
This is my one: accurate as of last weekend:
This is just a sample of the numbers that show how much diabetes influences and affects our day to day (and night to night!). If we’re talking numbers when it comes to diabetes, (which I don’t really like to do), there are so, so many more. Here are just some of them… (all are totally random estimations – don’t take anything as gospel here, folks!):
- The number of BGL strips found in unlikely places: 4,500,596,098
- The number of fruit pastilles I can stuff into my mouth at one time whilst in the throes of an ‘I-am-dying-give-me-all-the-glucose’ hypo: 142
- The number of hours being supported by friends with diabetes: 3 – and that’s just today!
- The number of times I’ve caught my pump line on a door handle: an embarrassingly significant number (because: #NotGoodAtDiabetes)
- The total weight I can lift/move when I am having a ‘super-power’ low: 1,450kgs
- The number of red scarves bought at the ADA meeting ‘Stop Diabetes Shop’ because the bloody aircon is too cold at convention centres and I keep forgetting to bring a jacket: 3
- The number of hours after my planned bedtime of 10.30pm I actually go to bed because I’m talking to DOC friends on the other side of the world: 2…3…4 (also: time zones suck)
- The number of times my heart beats per minute when I realise just how low I am, and that there is no easy-to-grab glucose source in sight: 180
- The number of days a Rockadex patch lasts on my arm: 7-10
- The number of nights I’ve lain awake fearing what diabetes has in store for me:more than I care to remember
- The number of handbags I have bought because I’ve convinced myself it will be ‘THE perfect diabetes bag’: 237
- The number of frocks that are hanging in the cupboard unworn because there is no bra that works underneath it and therefore nowhere to house a pump and RL: 25
- The number of supermarket aisles wandered around while low trying to decide what to eat: 8
- The number of jars of Nutella in my house at any one time (for hypo purposes, of course): 4
- The number of times I send out a tweet urging health writers to please be considerate when writing about diabetes: a few times a year.
- The number of times I’ve thought a hypo simulator is a good way to explain what it feels to have a hypo to people without diabetes: 0
- The number of gulps of water it takes to try to quench high glucose levels: 36
- The number of times I’ve explained why #LanguageMatters in diabetes: 123,890,456…123,890,457…123,890, 458
- The number of breaths I need to take before explaining – yet again – why I CAN eat that doughnut: 2
- The number of times I have been grateful that diabetes didn’t stand in the way of me having a beautiful baby girl: every single minute of every single day
- The number of ‘I know someone with diabetes, they died’ stories I’ve had to listen to: 6,984
- The number of times I’ve said the words ‘No, it isn’t a pager/nicotine patch, mobile phone, fitness tracker’ etc to explain a piece of diabetes tech strapped to or hidden on my body: 9,465
- The number of tears that have fallen because I feel overwhelmed by diabetes: countless
- The number of times I’ve been glad to have been diagnosed with diabetes: 0
- The number of times I acknowledge just how fortunate I am to have been born into a country where insulin is easily accessible: at least once every day
- The squirts of surface cleaner needed to remove marks from wherever I’ve accidentally left blood after checking my BGLs: 3
- The number of days I’ve wished I didn’t have diabetes: every single one of them
- The number of days I’ve felt so overwhelmed and burnt out by diabetes that I find performing the most basic things (diabetes and non-diabetes) a struggle: Frequently. because diabetes sucks
- Oh – and the number of times I’ve been wearing a white shirt when I’ve had a gusher: every time
- The number of times I’ve said or written ‘My Diabetes; my rules’: 566,285 (3 of those have been in the last 20 minutes)
- The number of times I give thanks to the brains trust behind DIYAPS: hourly
- The number of alerts or alarms from my phone it takes before I actually take note and do something: 6 (unless sleeping and then: whatever)
- The number of times I’ve accurately counted the carbs of anything containing rice: not once
- The number of times I’ve asked ‘Have you spoken with people with diabetes about that?’: lost count…now I just weep
- The number of lancets I have used in the last twenty years: probably about 18
- The number of dot points on this inane and silly list: every single one of them!
Oh, hello! It’s World Diabetes Day this week. And that means one thing and one thing only: diabetes will be elevated to health condition of the week, and we will see it EVERYWHERE.
I recently wrote that I’d been a little out of sorts a couple of weeks ago. I’m back to my usual robust and resilient self, but on the way back, I seem to have misplaced the filter that usually muffles the directness for which I am sometimes pretty much always known.
I realised it was missing when I was speaking at HIMSS last week and I was pretty direct when talking to some app developers. Instead of doing my usual sandwich feedback (i.e. something positive to begin with; suggestions for how it could be better in the middle; something positive to round it out, all with what could be considered a Dolores Umbridge smile on my dial), I went straight for the filling of the sandwich.
It turns out that without my filter, my comments eschew (rather than chew) bread and are all about the meat in the middle. I become totally low carb in my feedback. And I lose my smile. (A doughnut would probably bring that back, though…)
For this week, we will be banging on about the need for diabetes awareness. Of course, this morning as I was dressing and tucking small vibrating or lighting up boxes and infusion sets into my bra, and checking the tape on the CGM on my arm, while wondering if Loop really did have that downward arrow on my Dex under control, all I could think of was diabetes to the left of me; diabetes to the right. And I’m stuck in the bloody middle with it because it won’t leave me alone. I can’t help but be diabetes aware. All the fucking time!
But this week isn’t about us, (this piece from Tom ‘Diabetes Dad’ Karlya from a few years ago does a great job of explaining that in ways less sweary than my own). It’s about putting diabetes on the agenda for those of us who don’t already think about it morning, noon and night because it’s mailing address is our body.
So, for that reason, local newspapers, news bulletins, online new outlets and everywhere else that is trying to fill a 24-hour news cycle with content will want to talk about diabetes. If previous years are anything to go by, what we see will not necessarily be all that great. But that doesn’t need to be the case.
Last week, I was involved in a news segment about diabetes. When I watched in back on the news that night, I was so impressed with the way the story was presented. I’d managed to chat with the reporter as she was putting together the copy for the newsreader to use when introducing the story, and what she would say. There was no use of words such as ‘sufferer,’ ‘diabetic’ or ‘disease’. Instead, it was a balanced story that presented the facts. It was no less a piece because it left out sensationalist language.
I know that news outlets like a melodramatic take on things, but if you are in a position to help frame the way that diabetes is presented in the media, do it! It’s easy to do (the Diabetes Australia Language Position Statement helps) and mentioning that it takes no more time to use engaging and empowering language rather than stigmatising and negative language may help too.
I’m all about hope at the moment – well always – so here is what I hope for this World Diabetes Day:
In the posts celebrating the theme of this year’s WDD, diabetes and families, I hope that nowhere is a person with diabetes made to feel guilty, or that their diabetes is a burden on their family. I know that diabetes affects my family. I know that diabetes has moments of keeping them awake. I know there are times they may worry. But thankfully, I have never, ever heard them tell me, others, news outlets, social media, one of our dogs that they don’t sleep because of my diabetes, or they spend every minute thinking about how diabetes impacts on us, or that my health condition eats into our savings. Think about what you are saying and how we may feel if you talk about us like that.
In news reports, I hope for accurate reporting that doesn’t make us look pathetic or as though we deserve pity. I hope for language that presents the facts about diabetes without adding judgement or blaming us for our condition.
I hope that whoever is thinking, writing, speaking, presenting about diabetes this week remembers that no one asks to get diabetes; no one asks to get diabetes-related complications. Blaming and shaming us does nothing for anyone.
I hope for balance, and that for every story that celebrates an Everest climbing (or similar) we acknowledge the less grand endeavours. Because when speaking about diabetes, we cannot only hear from those at the extremes of the spectrum. Most of us are somewhere in the middle and our stories shouldn’t be left out.
In online groups I hope for no discussions about why we need to change the name of type 1 diabetes to distance ourselves from people with type 2 diabetes. Because: 1. Shut up and 2. Stop it; you’re adding to the stigma.
And more about online groups. If people are sharing news stories that will inevitably show overweight people eating hamburgers, the correct response is not to shame these people and tell them they are pathetic for not eating low carb. Because: 1. Shut up and 2. No one cares about how many grams of fat or how few grams of carbs you ate today, or how much insulin you didn’t need because you ate a bowl of organic kale with some organic tuna with coconut oil for lunch.
I hope that diabetes is presented as a serious health condition that does not discriminate when selecting whose body it wants to hang out with (in?). And that all different body types are represented.
And while we are talking about representation, I hope that we see diversity in diabetes stories from people of different colour, race, religion and sexual orientation. Because factors affecting our diabetes go beyond just the medications we take, and not everyone living with diabetes looks or is the same.
I hope that the voices of people with diabetes are not drowned out by those around us.
I hope to see myths busted.
I hope that somewhere we see that diabetes affects the whole person – body, mind and spirit – and that any solution claiming to help us, addresses each and every one of those parts of us.
I hope to see those who are happy to #MakeDiabetesVisible take whatever platform works for them and shares, shares, shares; and equally those who want to be more quiet ,are given the space to do that too. (Read this beautiful piece from Melinda Seed for more.)
And most of all?
Most of all I hope that no person with diabetes sees anything this World Diabetes Day that makes them feel diminished in any way for having diabetes. Because if that happens, then surely the day cannot be measured a success.
This year for World Diabetes Day, the International Diabetes Federation has decided on the theme ‘Diabetes Concerns Every Family’. According to the WDD website, the aim of the campaign is ‘…is to raise awareness of the impact that diabetes has on the family and to promote the role of the family in the management, care, prevention and education of the condition.’
I get that. I have said it on numerous occasions: it takes a village to live with diabetes.
I was a little nervous when I first saw some of the materials from the campaign, because I was worried that it may focus too much on the negative effects of diabetes and how it burdens the families of those living with diabetes. I know how diabetes impacts my family and I feel enormous responsibility already about that. I don’t need to be reminded of it, and I certainly don’t need to be guilted into being told that if I am not managing my diabetes properly I am doing a disservice to my family.
Although there have been a few little things that hint at those ideas, mostly, what I’ve seen has been positive and focused on celebrating and acknowledging those villagers who help us live with diabetes.
Diabetes Australia has decided on the campaign of #MyDiabetesFamily to highlight the idea of the village, and acknowledge that ‘family’ looks different to a lot of people. For some people with diabetes, it will be their immediate family – parents, partners, kids etc – who are their main cheer-squad and supporters; for others it will be their friends, work colleagues or maybe gym partner. Someone the other day told me that their dog is their most important diabetes supporter, providing them with comfort – and alerting them to lows.
I was asked to put together a collage of the people who I would refer to as #MyDiabetesFamily. This is it:
#MyDiabetesFamily
Obviously, and most importantly, Aaron and the kidlet feature. They know my diabetes in a way that no one else does because they see it most. They see the difficult days, the frustrations and how overwhelmed I can get, but they also see my celebrate the positives. And they have seen how much my diabetes – and my attitude to it – has changed in the last 12 months. In some ways, they benefit from Loop, too because my diabetes intrudes a lot less into our family’s life.
My parents and my sister are on there too – another obvious inclusion. Their support is never ending.
My gratitude for my family – in the more traditional sense of the word – is unending. They may not have diabetes, but they deal with it in different ways. While they may not understand that feeling of unquenchable thirst that comes from high glucose levels, or the panic of an ‘eat the kitchen’ low, they do know what it is like to be spectator to it all and I know that they all wish that I didn’t have to deal with those things – and everything else diabetes has to offer.
And the photo at the top shows just some of my friends with diabetes. As it turns out, this was the first photo on my phone with a group of diabetes friends, and these fab people are just a tiny number who also make up #MyDiabetesFamily; I am lucky to say that there are so, so many more.
These are the people whose islet cells are as absent as my own; these are the people who ‘get it’; these are the people who intrinsically understand what diabetes feels like – even if each of us have different experiences, and we use different words to explain it, and come from and with different perspectives. These are the ‘us’ in #NothingAboutUsWithoutUs; they are the ‘tribe’ in ‘Find your tribe, and love them hard’.
And in the middle? Well, that would be me. Because I am the one who is so grateful to have them all there as part of my life, helping and supporting me.
Want to get involved and celebrate your own diabetes family?
Have a look at the Diabetes Australia Facebook page (click on the image below to be taken there) to find out how.
DISCLOSURE (because they matter and I always disclose. ALWAYS.)
I work at Diabetes Australia, and had some involvement in the development of this campaign. I am writing about the campaign because I think it is a truly important one – not because I was asked to by any Diabetes Australia staff. Plus – I’ll take any opportunity to highlight the folks who make living with diabetes easier!
On Tuesday night, I finished my World Diabetes Day at an event at the Western Hospital. It was an event for people with type 1 diabetes, and the topic was diabetes technology, including DIY systems.
There were probably about eighty people in the auditorium. I recognised some – a lot of – familiar faces as the usual suspects (or frequent flyers) who attended Type 1 in the City events from when the series was run up until a couple of years ago.
I’m not going to write too much about the actual content of the event, but I do want to commend the Western Hospital for providing a safe and friendly place to discuss new technologies. When there is a diabetes educator like Cheryl Steele involved in organising a diabetes information session – someone who has always been at the absolute forefront of diabetes technology, and is now a ‘Looper’ herself – you can bet that the program would absolutely include THE LATEST technology, not just approved technologies.
It makes sense for her to feel this way. As more and more people start to investigate Open APS and Loop, and decide to try it for themselves, healthcare professionals in all settings will come across people using it. Denying it exists is ridiculous – does anyone truly believe that if HCPs don’t talk about it to their patients, no one will know about it?
Instead of turning their backs on DIY technologies, the Western Hospital opened their doors to people talking about it, and having HCPs in the room to be part of the discussion. It’s important to remember, the Western Hospital and their staff are not endorsing it, (just as my employer is not endorsing it when I speak about my personal experiences, or the ‘DIY movement’). But they are acknowledging it’s there and that #WeAreNotWaiting for regulatory processes to bring commercial products onto the market.
One of the speakers at the event was Dr Barbora Paldus who is involved in the current Medtronic hybrid-closed loop studies in Australia. Her talk was terrific and she gave great clarity about not only the trial she is involved in, but also closed loop trials around the world. She was clearly interested to hear about DIY APS, expressing her nervousness, but still open to discussion. She had a lot of questions, mostly about how to bring HCPs along in our decision to build our own loops. She wanted to know how we would encourage open dialogue with our HCPs so they better understood.
The discussion was lively. I felt that for most people in the room, they truly had just discovered a whole new part of diabetes treatments and technologies. Some people said that it wasn’t for them – and that’s fine. But they know something else open to them – something they may not have otherwise come to know about.
I got home at about 10pm and walked in the door. ‘How was it?’ asked Aaron. ‘It was brilliant.’ I said, realising that I was actually really quite emotional. ‘I miss these sorts of events. It was like the old days and the small community events at Royal Melbourne Hospital. We got kicked out of the auditorium so security could lock up!’
These days, I mostly attend events for HCPs, presenting at conferences and meetings. I enjoy this part of my work because it means I can provide a PWD perspective of what happens at those events. And I get to be the human face of the topics being discussed. I do love it.
But here I was amongst my people again – my tribe. And it was great to be there.
Looping, alive and deliberately non-compliant.
Click here for where to buy one of these David Burren designed t-shirts.
Each year for World Diabetes Day (WDD), the International Diabetes Federation (IDF) selects a theme and develops a suite of information resources. Member Associations of the IDF are encouraged to take on the theme, adapting the message to their country. In previous years, themes have included eye health and diabetes, access to healthy food, and diabetes education and prevention.
This year, the focus is women living with and affected by diabetes. And apparently, some people are not happy.
There are murmurings on a number of SoMe pages that the theme is discriminatory. Men have diabetes, too! And men care for people with diabetes! Why the focus on women? It’s not all about women, you know!
I’ve had a look through all the IDF materials and other WDD materials from other organisations and nowhere has it said anything about men not having diabetes, or not being involved in diabetes care. That’s not the point of the campaign at all, and if that is all anyone is seeing, they are missing the point.
Why the focus on women? Because health outcomes for women – including women with diabetes – are worse than for men. Women Deliver, a leading global advocate for the health, rights and wellbeing of girls and women, has some outstanding resources that show just how significant these differences are. Some information from the IDF materials:
- As a result of socioeconomic conditions, girls and women with diabetes experience barriers in accessing cost-effective diabetes prevention, early detection, diagnosis, treatment and care, particularly in developing countries.
- Socioeconomic inequalities expose women to the main risk factors of diabetes, including poor diet and nutrition, physical inactivity, tobacco consumption and harmful use of alcohol.
- Stigmatisation and discrimination faced by people with diabetes are particularly pronounced for girls and women, who carry a double burden of discrimination because of their health status and the inequalities perpetrated in male dominated societies.
- These inequalities can discourage girls and women from seeking diagnosis and treatment, preventing them from achieving positive health outcomes.
And these points don’t even mention women’s health issues such as diabetes and pregnancy, or reproductive and sexual health.
The campaign is not suggesting that men do not experience struggles when it comes to living with diabetes themselves, or are not involved and integral in the care of others living with diabetes.
But it’s not just the exclusion of men in this year’s campaign that seems to be a problem for some. I’ve seen a number of people complain because they feel the IDF materials are not talking about the great things women with diabetes can do. We can work! We can travel! We can have healthy babies! We can jump out of aeroplanes! We can be successful career women! We can run marathons! We can start businesses!
Of course we bloody can. And, again, nowhere in the campaign collateral is there any suggestion that women are not capable of doing these things. And if you are one of the women who is able to achieve all of those things, despite your diabetes, that is fantastic! But it is the very definition of privilege to think that just because your life is one way, then it must be the same for everyone else – or that if something is not a problem for you then it mustn’t be a problem for anyone else.
Those of us in a position of privilege can use WDD to draw attention to those in need. We can encourage others to donate and to lobby. We can highlight the inequality and inequity of health outcomes for different groups of people. This year, it’s about women.
And you known what? I can’t wait until diabetes health outcomes are the same for everyone, regardless of gender. Because then we won’t need to have a women as a theme.
Oh, did you know that next Tuesday is World Diabetes Day? There have been a few things online about it, so it may have come across your radar…
Diabetes Australia (disclosure: where I work) is running a campaign to acknowledge and recognise women living with diabetes, and women who support those of us who do.
We have developed a series of superSHEroe characters, representing just some of the amazing women affected by or working in diabetes. (The artist for these is the brilliant Claire Murray who I wrote about earlier this year. She is the creator of Megan, a wonderful diabetes superhero. Claire herself is somewhat of a superSHEro – her superpower is the ability to superbly draw and capture diabetes.)
Yesterday, we introduced the Dynamic Duo – Fantastic Frankie and her mum Lightening Lou.
I love this one so much because I feel that I have my very own Fantastic Frankie in my fabulous daughter.
My kid is my superSHEro. She has grown up around diabetes and while she doesn’t have it herself, she has undoubtedly been affected by diabetes because I live with it.
She came into this world and my diabetes meant that she needed to spend time in the special care nursery of the hospital. It meant that she needed to have her heel pricked for the first few days of her life multiple times to make sure that her glucose levels weren’t low.
She has grown up knowing to be careful of diabetes devices attached to my body when she jumps in for a cuddle. She had to learn early that there were times I simply couldn’t play with or read to her because diabetes needed my attention more urgently that she did. And she learnt to wait her turn, knowing I would always get to her; it just may have been after a juice box or jelly beans were consumed.
My superSHEro may not wear a cape or a mask, instead she’s likely to be wearing something she pinched from my closet. She may usually have her head in a Jane Austen book rather than lassoing the bad guys. She can be found lying on the grass out the front of our house with her puppy (who has no superpowers whatsoever, I’m afraid) or hanging out with her friends, listening to music rather than uncovering plots to bring down the free world.
My own superSHEro is bundled up in the mess and wonder of (two weeks from being) a teenager. She may be moody one moment, and delightfully snuggly the next. She is perpetually embarrassed by her parents, and horrified at the extent we will go as we desperately try (and fail) to prove to her just how cool we truly are.
But she can also be found grabbing me a juice when I’m low; asking me if I need anything when she notices me acting a little vague (usually just me being vague rather than anything else) or doing a spot of awareness raising and advocacy for diabetes. My diabetes isn’t hers – it doesn’t have to be and I’ve done everything in my (non super-) power to shield her from it – but she has taken it on in her own way.
Her superpower is her strength, her mind, her feistiness and fierceness, her vulnerabilities and her compassion. She takes on the world, she takes on my diabetes. And, (regretfully at times) she takes on her parents.
We wouldn’t have it any other way.
My superSHEro and her mother.
What a week. World Diabetes Day (WDD) is over for another year, but there is still lots going on in the diabetes space and in my life in general. Here are just some of the things making my brain a minestrone soup of dot points.
Mayo Clinic in Oz
I was lucky enough to win a scholarship to attend the Healthcare and Social Media Summit run by the Mayo Clinic earlier this week. I haven’t even started to pick apart all the amazing things I learnt during those two days, but there will be more to come soon.
Crown
Downtime is bloody hard to come by these days (because: November). BUT!!!! Binge watching a new show helps with some mindless entertainment and winding down at the end of the day. And Netflix has come to the rescue with The Crown. I admit that this is just a space filler until the REAL EVENT…But in the meantime, it will do and is actually super enjoyable.
Talking diabetes without being rude
We often see ‘Things to not say’ lists. I wrote one here where I suggested the only thing to say to someone living with diabetes was to offer them a Nutella cupcake.
I still stand by that advice, however thought I’d use WDD as an opportunity to write a more comprehensive list and it was published on the Mamamia Women’s Network. You can read it here – and may want to consider sharing it widely.
One of the things that we need to aim for is talk diabetes OUTSIDE our diabetes world. This article was not written for people affected by diabetes – we already know to not say most of these things. It is for those who say the annoying things because they don’t really understand diabetes.
So – have a read. And then share it around. And add your own ideas in the comments section on the Mamamia page. Let’s see just how far this can go to stopping some of the comments we hear over and over and over again!
Gilmore Girls
One week to go. We are ready!
WDD Twitter Marathon
The force of nature that is Cherise Shockley managed to pull off (once again) a 24 hour tweetchat for World Diabetes Day that included moderators and participants from all over the globe with an impressive variety of topics.
There was a bit of national Aussie pride in there with 4 hours of the chat being moderated by advocates from Down Under. I moderated an hour – with a focus on diabetes stigma – at 5pm ET which was 9am (Wednesday 15 November) AEDT, meaning I was into hour 27 of WDD when it was my turn to ask the questions.
Blue fatigue
My hand is a pretty damn good indication of how I am feeling right now. Still hanging in there with the whole ‘go-blue-diabetes-awareness-rah-rah-rah’ thing, but only just. Half way through Diabetes Awareness Month; World Diabetes Day is over and I am really feeling a lot of blue fatigue.
It seems that I am not the only one. Kerri wrote this on Six Until Me the other day and it resonated with a number of people, me included.
But the people; the people!
I was lucky enough to spend World Diabetes Day with some great diabetes people. We had house guests from Germany with us and my neighbour Jo popped in for a bit too. And my Amazing family were also there and, you know what, we hardly spoke diabetes at all!
It reminded me that my diabetes world is about people – those I’ve met; those who support me through it all; those I connect with online and in real life. And I know that I couldn’t do this without them to help me through.
#IFLGseesawchallenge
And finally, diabetes is such constant balancing act, and I don’t know about you, but I rarely manage any semblance of equilibrium!
So, I love the Insulin for Life Seesaw campaign – as both a metaphor for diabetes and also as a way to raise funds for an important cause.
Get involved by uploading your photo depicting the seesaw challenge of living with diabetes. Add the tag #iflseesawchallenge to your pic and Medtronic Australia will donate $1.25 to Insulin For Life Global. $1.25 is the amount it costs to transport a week’s worth of insulin to someone in need in a developing country.
Diabetogenic 