Is it this week’s full moon? Is Mercury in retrograde? (I actually don’t know what that means.) Is it the changing seasons?
I’m not sure the reason, but the last couple of weeks seems to have been especially busy when it comes to annoying people being annoyingly stigmatising on the Twitters.
It’s tiring calling it out. I sometimes do, I sometimes don’t have the mental bandwidth to get into it.
So, for those times that I can’t be bothered doing much, but want to do something, I now have this. And I’ll be sharing and posting and responding to stigmatising tweets with nothing more than a bright red and pink image.
This blog post is dedicated to Alex who has had to deal with some fucking unbelievable stigma today, and C and Mila who are regularly fabulous in the way they brilliantly call out stigma online.
Back when I first started writing and talking about diabetes language matters, it didn’t seem to be all that contentious an issue. I had been following with great interest how this discussion played out among people with diabetes, and it was super clear to me back then that there wasn’t a one size fits all approach or way of thinking. Some people were interested, some couldn’t have cared less. It was accepted that there would be different opinions and attitudes with different people. I know, how completely unexpected, because in every other way, people with diabetes are a tidy, identical, homogenous group who agree on EVERYTHING! #SarcasticFont
Many, many, many years down the track, more and more people are buying into this topic of conversation, which leads me to think that language does, in many ways, matter. To lots of folks.
Which is why it’s frustrating – and problematic – how fixated this discussion can become on specific words. That, I believe, is the problem with #LanguageMatters.
When I think about why I became so interested in this issue, I’m really clear why it mattered to me. It wasn’t about manners. It certainly wasn’t about suggesting that people with diabetes (that’s my preferred terminology, but you do you!) be told how to speak about the health condition we own.
To me, it never was about individual words. It was about words, broadly. It was about images used to accompany diabetes discussions. It was about attitudes. It was about behaviour. It was about addressing the image problem that diabetes (still) has. It was about changing the mindset that it’s okay to use diabetes and those of us living with it as a punchline. It was about shifting the public perception about diabetes. It was about people with diabetes not feeling ashamed to do their diabetes tasks in public. It was about elevating our health condition to the same level as other health conditions. It was about people with diabetes being respected. It was about stopping blame and shame and stigma. It was about people with diabetes deciding and directing how their own brand of diabetes would be discussed by those around them.
It was always about communication as a whole – communicating to and about people with diabetes.
And yet, with all that in mind, so many online discussions that I see still want to reduce this big body of work to: ‘But I want to call myself a diabetic.’ If someone said that to me, which some people certainly have, my response has been, ‘Okay, cool. You should definitely do that then!’
So why does THIS seem to be the particular tiny, infinitesimal, microscopic, miniscule part of the whole language discussion that some people keep coming back to?
I’ve started to wonder what are their motives behind focusing on this issue? When I see someone, especially someone who’s been around for a couple of years and who everyone knows has been part of these discussions before, start with the PWD vs diabetic debate, I wonder if they’re trolling. They know it will get a response. They know it’s likely there will be disagreements. There are some super savvy people on social media out there who know that asking this question, or even just mentioning it will get a reaction – every single time – and it might even add to their follower count. I guess that some people think that’s currency.
But really, all it seems to do is narrow and diminish the broader discussion. These days, when I am asked to give a talk on language and diabetes, I dedicate one slide and about 45 seconds at the beginning of my talk to get the diabetic / PWD issue over and done with, and then focusing on what I want people listening to the presentation to take away with them.
I don’t know how or when the diabetes #LanguageMatters hashtag started. It wasn’t the name of the first language position statement, but it certainly has been used for a very long time, and been associated with the global movement that has its foundations very firmly rooted in the diabetes community – even before the advent of the DOC, because this discussion has been happening for long before our community moved into online spaces.
The problem with using #LanguageMatters is that it is too often drawn into being about one tiny part of the whole big issue. But it seems that #LanguageMatters is here to stay with a whole lot of material and dialogue and debate behind it – a lot of which is making a huge difference to the way people feel about their own diabetes. So, what a shame that it so often gets minimised to something that is only one little part of it. What a shame that some people knowingly fuel the fire and the arguments that ensue by bringing up diabetic/PWD again. What a shame that this really important, really BIG issue is reduced to something quite tedious.
Perhaps we should have gone with #CommunicationMatters to signpost that it wasn’t about specific words. Perhaps we should have gone with #AttitudesMatter to bring in how language adds to attitudes of stigma and blame Perhaps #BehavioursMatters would have addressed how body language and other behaviours can be just as important as verbal language.
Or perhaps we should have used all of them because, really, #ItAllMatters.
You can read read more on my frustration about this issue in this post (and frequently on my Twitter feed).
If you look – carefully – around our home you will notice diabetes is everywhere.
Open the fridge and you will see insulin vials and the paper prescriptions for next time I am running low, housed in a blue box on the lowest shelf.
The pantry is stacked with juice boxes, fruit pastilles and other easy to digest sources of glucose.
Tell-tale signs on my bedside table include a jar of jellybeans, a half empty glass of orange juice and a BGL meter.
In the bathroom is the cannula I pulled out this morning before I stepped into the shower – so that I could enjoy the water on my body with one less piece of equipment taped to my skin.
My bag is a veritable treasure trove – if the treasure you seek is quick-acting glucose, old blood glucose monitoring strips and diabetes supplies…
In the bedroom there are the empty packages from pump lines and cartridges and CGM sensors, waiting to be disposed of appropriately.
A beautiful old cupboard housed in the corner of that same room look as though it should hold family heirlooms, but instead is dedicated to housing neatly stacked diabetes supplies.
In my study, on the bookshelf, you will see shelves dedicated to diabetes-related titles: books by friends and colleagues about how to live well with diabetes.
On my desk is a half-empty bottle of glucose tabs and glucose tab dust liberally sprinkled around.
There are pathology slips on the fridge, magnets holding them in place, reminding me to make time to get those checks done.
There is a pattern of red dots on the bed linen from the ‘splurter’ last night when I calibrated my CGM. Running late this morning I didn’t have time to change the sheets.
On the kitchen bench, where items for recycling sit before being taken to the bin, you’ll frequently see one, two, three empty juice boxes.
Tied around the rose bushes in the front garden you’ll find used pump lines, holding the branches to the fence.
On the fridge are messages and cards and silly notes from DOC friends from nearby and faraway, reminding me that I have support around the globe.
And everywhere, but everywhere, you’ll see an odd BGL strips, glittering (littering) the ground.
Diabetes is invisible until you look for it. And when you do – and when you see it – you realise that diabetes lives here.
Chances are, Australians with diabetes will know who Stanley Clarke is, especially those who have many years of diabetes under their belt. Pretty much every person with diabetes who checks their glucose levels is benefiting from his legacy.
If you don’t know who he is, or his story, and don’t get Circle, let me give you a little taste of this remarkable man and his contribution to diabetes as we know it today.
I was thrilled to read a beautiful profile of Stanley in this month’s edition of Circle magazine, the quarterly magazine from Diabetes Australia. (And by way of disclosure I am employed for Diabetes Australia, and I write an article for each edition of the mag.)
The latest edition of Circle Magazine
Stanley and his wife Audrey’s daughter Lisa was diagnosed with diabetes in 1972, aged 5 years. As was the norm at the time, she relied upon the only option for checking glucose levels at the time: using Benedict’s solution, drops of urine and colour charts to provide highly inaccurate and misleading results. That was as good as it got!
Stanley was an electronics engineer, and he knew that there had to be a better way. In fact, he’d seen the better way – machines that were available in hospitals that checked glucose in the blood. But these machines were large, and very expensive and not considered part of routine, daily, at home care for people with diabetes. Stanley set about to change that.
He worked to develop a smaller, portable, battery-operated blood glucose machine and in two weeks had a prototype that he was ready to show his daughter’s paediatric endocrinologist. The endocrinologist, diabetes legend, Martin Silink, was impressed and ordered 30 and then an additional 200 machines to be given to children at the hospital. Apparently, within six months, every child with diabetes at the hospital had a home glucose meter, and monitoring blood glucose levels was part of their routine, changing their diabetes management forever.
Clarke machines were ordered and sent to all corners of the globe as people with diabetes everywhere were keen to be able to access this new technology which improved outcomes and reduced diabetes burden.
The machines were sold for what it cost Stanley to make them. He wasn’t interested in making a profit – only in that the machines were available and accessible to people with diabetes.
I read the beautifully written tribute to Stanley in Circle, getting a bit teary at some of the beautiful stories of people who had benefited from this new technology. And my reading was also tinged with a sense of familiarity. I didn’t have diabetes when his home blood glucose meters became common, but I certainly did benefit from it.
Even more so, I have benefitted from the ingenuity of people directly affected by diabetes. The #WeAreNotWaiting movement is built on the shoulders of people like Stanley and it continues to push boundaries and seek solutions for diabetes problems that we know matter. We know they are problems because we live with the consequences of them every minute of every day. We celebrate when the solutions are presented to us because we know what a difference they will make.
I remember hearing Dana Lewis speak about her work that meant she could actually hear her CGM alarm at a volume that woke her up at night, and understanding why that was something so critical.
I remember hearing about Nightscout for the first time, and how one of the benefits of remote monitoring meant that parents felt more confident allowing their kids to have sleepovers at friends’ houses, and understood just why that made all the difference to kids with diabetes.
I remember hearing someone tell me all about using DIYAPS, and I understood not only why it was a vast improvement on commercial diabetes therapies, but it made me determined to build a system for myself. And how glad I am that I did!
I find it unbelievable, and more than a little tragic, that at the same time that there is this incredible user-led innovation happening, there is also pushback. The opposition takes many forms, but it seems to come back to the same thing, and that is the discomfort of many working in healthcare and their reluctance to trust what people directly affected by diabetes are capable of.
I wrote in this piece a few years ago about the predictable way that many HCPs recoil from new therapies. There are reasons thrown around for that: no money to fund it; no evidence to support it; safety concerns.
But money doesn’t seem to be the driving factor propelling the innovators forward (a nod to Simon Lewinson who has been providing re-batteried CGM transmitters to people in Australia meaning that for them, that therapy is actually affordable). Safety is always the primary concern for those of us using these technologies, and to suggest otherwise is an insult. And the evidence is there, perhaps just not in expensive RCTs, which need to stop being considered as the be all, end all.
Stanley Clarke changed the way that day-to-day diabetes was managed and so have others since then. And all I can think of is that we are so, so fortunate to have innovators like that whose only motivation it seems is to improve a life lived with diabetes. What a truly remarkable goal to have.
I am celebrating 23 years of living with diabetes.
8539 days of living with diabetes.
1,537,020* diabetes decisions.
It’s no wonder diabetes is so exhausting.
Today is also about the number 98, because 98 years ago, diabetes became commercially available for the first time. This was all very much in my mind in the middle of last night when I was wide awake, not because I was dealing with my own diabetes, but rather because I was speaking at the World Health Organisation launch of its new Global Diabetes Compact.
This year is all about the number 100, celebrating the centenary of insulin…100 years since 4 scientists, Banting, Best, Macleod and Collip, discovered insulin – the reason I am alive today.
There is a lot to celebrate, but at the same time, there is a lot we need to acknowledge that isn’t so great. People with diabetes are still dying because they cannot access insulin and other drugs, diabetes consumables and healthcare. The number 12 is also relevant, because it remains the average number of months that a child born in sub-Saharan Africa will live once diagnosed with type 1 diabetes.
I don’t know the number of diabetes friends I have, but, damn, that number, and the people included in there, is one of the most important for me. The 4 diabetes friends who continue to keep a diabetes group chat alive every single day give me life, even if we are so many miles away.
The numbers 1 and 2 are important, but they are not the only numbers that refer to the different types of diabetes.
As I type, the number 5.4 is showing on my Loop app, and so is 3, representing how much insulin remains in my pump which means I’ll need to take 5 minutes to refill my cannula.
My husband and daughter are the 2 people in my world who see my diabetes all the time, support me through it, love with despite it. There is no numerical way I can define how much their love means to me. (And the 2 dogs and 1 cat couldn’t care less about it…!)
Today is also about the number 1. Me. This year isn’t a particularly monumental diaversary number – it’s not one that ends in a 0 or a 5 which seem to be the ones that I celebrate more. And yet, I do feel that it is worth acknowledging and celebrating. Which I’ll do – in between the 180 diabetes-related decisions I’ll be making.
1 strident, and generally shambolic, woman with diabetes.
Non-Aussie friends may not get the reference in the heading to today’s post. Our Prime Minister loves to pretend to be at one with the people by excitedly declaring ‘How good is Australia’. But right now, in reference to the global COVID vaccine rollout, Australia is not good at all. In fact, I’d say we’re pretty bloody hopeless. My heart breaks for the sacrifices we all made last year that have resulted in us being pretty much at zero COVID – something the PM can take no credit for considering he wanted us to ‘learn to live with the virus’.
But to answer the question posed in my post title literally: COVID vaccines are fucking amazing. A well-vaccinated population is the only way we get out of this pandemic, and the data on the vaccines is very promising.
What is not good is the complete and utter bungling of the rollout that we are dealing with here in Australia. We started late; accessing a vaccine is proving impossible for many people; quarantine and front-line workers have not all been vaccinated as a priority, GPs don’t have vaccines available for their clinics; there remains a risk of the vaccine escaping hotel quarantine settings into a largely unvaccinated community, and, it seems, that we have limited quantities of vaccines available. Plus, the decision to effectively put too many vaccine eggs in one basket has backfired due to the changing advice regarding the AstraZeneca vaccine. To top it all off, the comms plan has been a debacle – and continues to be, most recently with the PM having decided that Facebook will be the channel he uses to update the public on our now non-existent vaccine targets. (He also told us to not use Facebook as a source of information, but I guess that was a few weeks ago, and we need to keep up with the merry-go-round.)
Unsurprisingly, a lot of people are concerned, confused and unsure of what they should be doing. While the information that was released in a hastily organised presser at 7.30pm last Thursday night wasn’t all that much of a surprise, considering what was unfolding in other countries, some people started to feel a lot of unease. There has been a plenty of discussion in online diabetes groups about what the best course forward is. While the Pfizer vaccine is the preferred choice for anyone under 50 years (here in Australia – it’s different ages in other countries), there is very limited Pfizer available. If you are under 50 years, you can still choose to have the AZ vaccine if that is all that is available to you, however both NSW and Vic have currently stopped giving AZ to anyone under 50 until there is revised informed consent materials available.
I had my first AZ vaccine three weeks ago after spending three hours on the phone finding a GP clinic that had available doses and would see me if I hadn’t already been to the clinic. I had no side effects at all. Both my parents and parents-in-law have had the AZ vaccine and I know a lot of people in the diabetes community both here in Australia and overseas who have had it with, at worst, typical side effects. At a breakfast the other day with some Loopers, three of us had already had the AZ jab and none of us had reactions. I will be very confidently and happily rolling my sleeves up for my second jab in June, so that I can be fully vaccinated.
For me there is a simple equation that I used to make my decision, and for the assurance I feel. As a person living with diabetes, the risk of complications from COVID if I were to catch it are far greater than the risks of an adverse event from having the vaccine. It’s that simple. Plus, I have a responsibility to get the vaccine because there will be people in the community who cannot, due to (real) medical reasons.
The question for people with diabetes now – especially those under 50 years of age – is what does that equation look like for them. What is their risk assessment? The likelihood of a blood clot after an AZ jab is tiny, but there are some people who are at an increased risk. How does that weigh up to the chance of getting COVID – and the complications that may follow – if there is another wave?
Right now, it’s understandable that there are people with diabetes who are feeling very anxious about that possiblity of another wave as we head into colder months, and also not being able to get vaccinated, or being very unsure about whether they should have the AZ vaccine. Diabetes Australia has offered this advice for people with diabetes, and at least one thing that is consistent from all reputable sources, is that the chance of a clot is very, very small.
For anyone minimising the concerns that some people may be feeling, just remember that it is people with diabetes who were included in the ‘Everyone will be fine as long as you’re not old or unwell’ statements that were common when COVID started over twelve months ago. The impact on the mental health of people who started to feel disposable is very real. Those statements are still around, although some people added ‘Well YOU can stay home until you can get a vaccine and let the rest of us get on with things.’ That’s all good and well…if the vaccine rollout was working. It is not.
This is a troubling time. Australia’s record with COVID has been excellent, thanks to outstanding leadership from our state governments. It is a shame that, according to this article from The Monthly, we are now faced with the likelihood of another wave of the virus, more lockdowns, and travel restrictions for a number of years to come. How good are COVID vaccines? They’re bloody brilliant. But only if they’re in the arms of people.
When I was planning for pregnancy, and while I was pregnant, I read everything I could about how pregnancy might impact on diabetes (and vice versa). There is a lot of information out there about pregnancy and diabetes (especially pregnancy and type 1 diabetes) I wrote this online diary sixteen years ago, with weekly updates throughout my pregnancy. Heaps of new parents with diabetes share their early parenting stories – with great tips about managing glucose levels during those new days of having a small person completely reliant upon you, while having to manage a health condition that is also reliant upon you!
But what happens when your kid is older and the impact of diabetes on a daily basis seems to be less? It doesn’t seem all that relevant really, but I do wonder if there is a long-lasting impact that I don’t consider. Just how has diabetes influenced the way I parent? Indeed, has it impacted at all? And has diabetes affected my relationship with my daughter? What does it mean for her to have a parent with diabetes?
It’s not my story to tell from the perspective of my 16-year-old daughter. I have asked her many times what it’s like having a mum with diabetes; what it’s like having been around diabetes all her life. One day, she might like to share her feelings with others, but they are her feelings and experiences and I completely respect that it is not my job to share her thoughts. Plus, my interpretation will always be clouded by my own version of events, and my own fears and biases.
When she was younger, my diabetes and its impact on my daughter caused me a lot of unease. I have never stopped worrying that I have passed on my messed-up DNA to my daughter, but it was more of a regular concern (panic?) when she was small. I spent a lot of time with a psychologist learning how to rein in those feelings because they spilled out a lot into anxiety and fear. I had to understand that those worries were about me and my feelings of guilt, not about her – something she told me without hesitation one day when I wanted to check her glucose (for probably no good reason).
These days, I rarely find myself questioning how much water she is drinking or wondering if she seems to have visited the loo more frequently than usual. Perhaps it’s because I feel confident enough that she knows the four Ts – of course she does – and if she ever were concerned, she would come to me. Or make an appointment to take herself off to the GP. (In those moments when I have noticed that I am starting to get really concerned about this again, I make an appointment to see my psychologist, because sometimes I do need help to keep things in perspective and keep the dread at bay.)
One way that diabetes has definitely clouded the way I parent is how I respond and react to times she is feeling poorly. I am not a sympathetic parent – mostly because diabetes has taught me to just get on with things – even when it is being a royal pain in the arse. I jump to a diagnosis of hypochondria any time she says she’s not feeling well. (To be fair though, that is my diagnosis for anyone claiming to feel unwell, not just my own child).
I was not a parent who, when the kidlet was an accident-prone toddler, jumped at every tumble or scratch. Sympathy is hard to come by with me – a point she made keenly when she was about three years old and tripped as we wandered down the street. She responded to my ‘Oopsie, up you get,’ with a tear-stained, overly dramatic ‘Just once I’d like you to ask me if I’m okay.’ I promised that if there was gushing blood or a visible bone sticking out that I would ask her if she was all good. But otherwise, up you get and off we go to the park.
Living with diabetes and the needles that come with it has meant that she doesn’t even get to voice any nervousness when it’s vaccination time. My ‘toughen up princess’ approach to even the start of a frown because a needle is imminent has taught her to not even go there! That sympathy will need to come from persons who do not jab themselves on a daily basis.
My Italian mamma tendencies do show up with bowls of steaming chicken soup for runny noses, and pastina con burro for tummy aches. But once they are prepared and consumed, there is an expectation that life goes on without moaning or much downtime. I think my own parents find me a little mean, but they more than make up for it by piling on sympathy and compassion, while muttering about what a cruel and indifferent mother she has.
Understanding my need for the right HCPs at the right time has meant that I’m more inclined to outsource than do things myself. I can’t count the number of times I’ve asked if she would like to see a psychologist because surely, the angst of the tween years or the teen years, or any of the obviously nightmarish parenting she has had to deal with is far better dealt with by a professional. But instead, she has seemed mostly happy enough to chat over homemade cookies and a cup of tea when she has needed to talk something out, so I guess that my nasty, unsympathetic ways haven’t resulted in her thinking that she can’t confide in me when she wants.
I write a lot of this very tongue in cheek, but I do believe that it is impossible to live with a chronic health condition like diabetes and not have it somehow impact on all relationships, including those with our children. Having diabetes and getting pregnant – and then holding on to that pregnancy – was probably the hardest thing I have ever done, but it is also the most wonderful, incredible, important and worthwhile thing I have done. Fertility difficulties before and after that one successful pregnancy have made me acutely aware of just how fortunate I am, and not a day goes by where I don’t, at some point, think that, and marvel at the amazing human I have a front row seat watching grow into a truly remarkable person.
Because in amongst it all, I also wonder if diabetes will rob me of some time with my beautiful girl. Will it cut short the number of years I get to be with her? What will I see? How much of how her life turns out will I be witness to?
These days, I think that is probably what scares me most about diabetes – that I won’t get to have as many of those years and see as many successes and struggles as I hope to. Which makes me horribly sad, because the first sixteen years have been nothing but a delight. Of course, I love her – I adore her! But also, I really like her. I want to be around for as long as I can and to see as much of that as possible. I fear that diabetes will be limiting – limit what we can do together, and simply minutes, hours, days, years together. It’s these thoughts that are locked away in the dark parts of my mind and don’t get to see the light of day much. Because when they do, I feel a sadness like no other and a terror far bigger than anything I have ever had to face.
If I’m asked about the burden of diabetes stigma, a complex tree diagram starts to form in my head. There are branches sticking out at weird angles with arrows and overlapping segments and odd clusters…and I suddenly become burdened just thinking about diabetes burden!
I’ve written before many times about just how heavy diabetes can be – a dense weight that comes from the never-ending need to ‘do diabetes’ and the never-ending attempts to make sense of it all. And I’ve commented on the emotional weight that we feel when diabetes becomes overwhelming and distressing, and the burden of burnout. And I’ve also written a lot about the relentless stream of diabetes admin – and why having a personal assistant to manage my diabetes would be just so damn useful to alleviate the burden of appointment making, prescription filling, consumables stocktaking and complications screening
Burden takes on many forms. And it means different things to different people. If there is a burden spectrum, we would see people plotted all along the line. And we would move around as well. I know that there have been times I’ve feel far more burdened by diabetes, and I know that I feel so much less burdened since I’ve been using Loop because the tasks that added to that daily burden have diminished considerably. Diabetes makes a lot more sense a lot more of the time without me needing to work it out. Of course, the weight is less.
But on top of the daily tasks and the feelings of being overwhelmed, there is still more that can contribute to burden. One of those things is stigma – the way others make us feel about diabetes – about our diabetes – can add significant burden.
Yesterday, I tweeted this:
If you want to see an incredibly diverse and interesting discussion about how stigma has impacted people with diabetes, and parents of kids with diabetes, click on the tweet above and read the replies. I asked the same question on my Facebook page and the stories there were equally harrowing. People’s experiences are heartbreaking. It becomes clear why people drop out of healthcare, are terrified to see HCPs, or try to hide their diabetes from others when you understand how they have been treated.
The weight of that burden is heavy. The judgement and blame and shame can weigh us down. The emotional weight of stigma can be paralysing.
One of the themes that is recurring when it comes to stigma discussions is the idea that we are not doing enough to look after ourselves. That could be in reference to developing long-term complications, or it could be an in-the-moment situation that someone thinks we should be better prepared for. I remember someone once criticising me for not having any jellybeans on me when I was having a hypo. I’d had three hypos already that day, and had worked through my stash. I wasn’t wilfully neglecting my diabetes by being caught short. But that was the assumption.
Another theme is that diabetes is a character or personality flaw, brought on by not caring enough about out health. How tiring it is to have that being said when we are also trying to simply manage to live with diabetes. Weight stigma and diabetes stigma go hand in hand for many, with assumptions made left, right and centre.
Being diagnosed with diabetes creates burden. Living with diabetes brings daily burden. Worrying about how diabetes might impact our futures crafts more burden. And stigma adds even more. It’s exhausting, hurtful and just downright unnecessary.
The Merriam-Webster word for 2020 was, perhaps unsurprisingly, ‘pandemic’. But I do think it could have just as easily been another word that we were seeing absolutely everywhere, and that word is unprecedented.
I started to despise that word. Everything about the COVID-19 pandemic – indeed the pandemic itself – came with the descriptor ‘unprecedented’. From the (unprecedented) stockpiling of loo paper, to the (unprecedented) times in which we were living, we were firmly reminded at every turn that we had never, ever, ever seen anything like this before. It was all novel.
Which is the opposite of diabetes. Diabetes is always precedented. There is nothing novel about diabetes on a day-to-day basis. Sure there is the occasional curveballs thrown at us, but the normal, daily routine of diabetes is mind-numbingly not new!
Variable glucose levels with no rhyme or reason? Precedented.
Frustrations at constant lows or stubborn highs? Totally precedented.
Plummeting glucose levels just before bedtime? Precedented.
No two days of diabetes the same? Precedented.
An inability to bolus correctly for rice (or whatever your food nemesis may be)? Precedented.
PWD being left out of conversations and decisions about our own condition? Oh-so-precedented!
Running out of jellybeans when hypo? Precedented.
A pump cartridge running out just before bed? Annoyingly precedented.
Stigmatising comments about diabetes? Boringly precedented.
The monotony of diabetes – the complete Groundhog Day of it all – is the antithesis of what we have witnessed over the last year and a bit.
But whether it is all new (unprecedented!) or mindlessly boring (precedented!) pandemics and diabetes are both pretty damn crappy.
Unprecedented 2020 by Qunadamooka woman and contemporary artist, Megan Cope. Photo taken by me at one of my visits to the NGV Triennial.
Ten years ago was the first time I wrote something about some so-called celebrity making a thoughtless comment about diabetes. That’s right, that piece was written in 2011.
And yesterday, my Twitter feed was lit up with people commenting on some bloke on TV in the UK who made a stigmatising comment about diabetes, because of course that’s what people with unsophisticated senses of humour do at Easter time.
I muted a heap of terms because I couldn’t be bothered reading the replies. Why? Because I’d read them all before. I’d probably written a few of them myself.
I have nothing more to write, because I have written about this countless times. Diabetes bloggers and advocates who have been around the traps for longer than me have written about it countless times. We’ve seen it all before. We’ve said it all before. For ten years I’ve been banging on about it. Welcome to the table if you’re joining in now!
Here is what I wrote in this post, after a cafe named one of their wonderfully decadent desserts ‘diabetes’, because, haha, how funny, no one has EVER made a joke like that before:
‘But there is definitely room for a discussion about why diabetes continues to be seen as fodder for bad jokes, and mindless behaviour like this. Until we get the language about diabetes right, this will continue to happen. Again. And again. And again. That is the discussion I’m interesting in having now.’
I may be done writing critiques of B (C, D, E) – list celebrities being stigmatising jerks about diabetes. But I am not done talking about language. THAT is the issue here. For as long as diabetes is seen as an easy punchline; as long as people with diabetes are seen as an easy target; as long as diabetes is considered a lazy condition that deserves no understanding, this is going to keep on happening.
Diabetogenic 