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I probably should stop thinking of my job as ‘my new job’. I’ve been at Diabetes Australia now for well over five years. But for some reason, I still think of it that way. And so do a lot of other people who often will ask ‘How’s the new job?’
Well, the new job is great, and I’ve enjoyed the last five years immensely. It’s a very different role to the one I had previously, even though both have been in diabetes organisations.
One thing that is very different is that in my (not) new job I don’t have the day-to-day contact with people with diabetes that I used to have. That’s not to say that I am removed from the lived experience – in fact, in a lot of ways I’m probably more connected now simply because I speak to a far more diverse group of people affected by diabetes. But in my last job, I would often really get to know people because I’d see them at the events my team was running, year in, year out.
Today, I got a call from one of those people. (I have their permission to tell this story now.) They found my contact details through the organisation and gave me a call because they needed a chat. After a long time with diabetes (longer than the 23 years I’ve had diabetes as an annoying companion), they have recently been diagnosed with a diabetes-related complication. The specific complication is irrelevant to this post.
They’ve been struggling with this diagnosis because along with it came a whole lot more. They told me about the stigma they were feeling, to begin with primarily from themselves. ‘Renza,’ they said to me. ‘I feel like a failure. I’ve always been led to believe that diabetes complications happen when we fail our diabetes management. I know it’s not true, but it’s how I feel, and I’ve given myself a hard time because of it.’
That internalised stigma is B.I.G. I hear about it a lot. I’ve spent a long time learning to unpack it and try to not impact how I feel about myself and my diabetes.
The next bit was also all too common. ‘And my diabetes health professionals are disappointed in me. I know they are by the way they are now speaking to me.’
We chatted for a long time, and I suggested some things they might like to look at. I asked if they were still connected to the peer support group they’d once been an integral part of, but after moving suburbs, they’d lost contact with diabetes mates. I pointed out some online resources, and, knowing that they often are involved in online discussions, asked if they’d checked out the #TalkAboutComplications hashtag. They were not familiar with it, and I pointed out just how much information there was on there – especially from others living with diabetes and diabetes-related complications. ‘It’s not completely stigma free,’ I said. ‘But I think you’ll find that it is a really good way to connect with others who might just be able to offer some support.’
They said they’d have a look.
We chatted a bit more and I told them they could call me any time for a chat. I hope they do.
A couple of hours later, my phone beeped with a new text message. It was from this person. They’d read through dozens and dozens of tweets and clicked on links and had even sent a few messages to some people. ‘Why didn’t I know about this before?’, they asked me.
Our community is a treasure trove of support and information, and sometimes I think we forget just how valuable different things are. The #TalkAboutComplications ‘campaign’ was everywhere a couple of years ago, and I heard from so many people that it helped them greatly. I spoke about it – particularly the language aspect of it – in different settings around the world and wrote about it a lot.
While the hashtag may not get used all that much these days, everything is still there. I sent out a tweet today with it, just as a little reminder. All the support, the connections, the advice from people with diabetes is still available. I hope that people who need it today can find it and learn from it. And share it. That’s one of the things this community does well – shares the good stuff, and this is definitely some of the good stuff!
Want more?
Check out the hashtag on Twitter here.
You can watch a presentation from ATTD 2019 here.
Read this article from BMJ.
Today is the day. The centenary of what remains one of the greatest medical discoveries ever. Here is a reworked post (first published here). There is not a day that I am not grateful for this discovery. And not a day goes by when I am not aware that the diabetes life I live and the access I have is not the same for everyone around the world.
And so today seems a really good day to make a donation to a charity that supports people with diabetes who need it. For me, when deciding which diabetes charities I’ve decided to donate to, it’s been important that the support is tangible. And that’s why I have repeatedly written about Life for a Child, and Insulin for Life on this blog, and supported them with regular donations for a number of years. Their works provides on the ground support, medications, diabetes supplies, education, as well as doing research. They also have an advocacy function, raising awareness of not only the work they do, but the people they support.
If you are able to make a donation it’s a great day to do it. In amongst the celebrations it’s important to remember not everyone will be able to do that today. Remembering them on this important day in diabetes history is very fitting.
Donate to Insulin for Life
Donate to Life for a Child
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There has been lots of discussion about what happened 100 years ago today – on 27 July 1921. University of Toronto scientists Fredrick Banting and Charles Best successfully isolated the hormone insulin. Today, that means that I am alive and kicking, 20 years after my islets stopped making any.
It means that type 1 diabetes treatment moved from being a starvation diet and not much else, to injecting a drug that was life giving and life saving.
It means that I take a drug that while giving me life, is also lethal and if not dosed carefully and with great consideration can cause terrible side effects.
It means that people with diabetes don’t die terrible, agonising deaths simply because they were diagnosed with diabetes.
It means that I need to be able to do crazy calculations to ensure what I put into my body completely and utterly imperfectly mimics what those with functioning islet cells do completely and utterly perfectly.
It means that there is a treatment therapy that gives us hope and life and allows us to live – sometimes very long, long lives.
It means that each and every day I feel fortunate to have been born when I was and not 100 years earlier.
It means I take for granted that I have access to a drug that keeps me going.
It means that there are far too many people around the world who still do not have access to the drug I take for granted. And 97 years later, that is not good enough.
It means that it was 97 years ago – 97 years ago – since the discover of insulin to treat diabetes and we are still without a cure.
And it means that I wonder when there will be the next breakthrough that is as significant and meaningful and life changing and life saving as what those two Canadian scientists discovered 97 years ago.
But mostly. It means that I live with hope. Hope that those scientists are somewhere working away, and perhaps – just perhaps – are about to find that next big breakthrough.
I’ve just placed an order so I can have this print in my office at home.
Alex is donating 20% of all sales of this print to Type 1 International, another charity I have written about a number of times, and supported financially.
You can see more artworks by Alex at her website, Diabetes by Design.
A week out from National Diabetes Week, and this piece has been sitting in my ‘to be published’ folder, just waiting. But the post-NDW exhaustion coupled with lockdown exhaustion, plus wanting to make sure that all my thoughts are lined up have meant that I haven’t hit the go button.
In the lead up to NDW I wrote this piece for the Diabetes Australia website. That piece was a mea culpa, acknowledging my own contribution to diabetes-related stigma and owning it. I also stand by my thoughts that the stigma from within the community is very real and does happen.
But what I didn’t address is just where that stigma comes from. Those biases that many people with type 1 diabetes (and those directly affected by it) have towards type 2 diabetes come from somewhere, and in a lot of cases that is the same place where the general community’s bias about diabetes comes from. It is all very well for us to expect people with type 1 diabetes to do better, but I’m not sure that is necessarily fair. I think that we should have the same expectations of everyone when it comes to stamping out stigma.
And so, to the source of stigma and, as I’ve said before, it comes from lots of places. As someone who has spent the last twenty years working in diabetes organisations, I know that the messaging my orgs like (and including) those that have paid my weekly salary has been problematic. I still am haunted by the ‘scary’ campaign from a few years ago that involved spiders, clowns, and sharks. (If you don’t remember that campaign, good. If you do, therapy works.)
For me personally, I don’t think much stigma I have faced has come at the hands of other PWD. Sure, there’s the low carb nutters who seem to have featured far too frequently on my stigma radar, however, the most common source of stigma has undoubtedly been HCPs.
It’s not just me who has had this experience. The majority of what I have seen online as a response to experiences about stigma involves heartbreaking tales of PWDs’ encounters with their HCPs.
While I will call out nastiness at every corner, and no stigma is good stigma, it must be said that there is a particular harm that comes when the origin of the stigma is the very people charged to help us. Walking into a health professional appointment feeling overwhelmed, scared, and frustrated only to leave still feeling those things, but with added judgement, shame and guilt is detrimental to any endeavours to live well with diabetes. In fact, the most likely outcome of repeated, or even singular, experiences like that is to simply not go back. And who could criticise that reaction, really? Why would anyone continually put themselves in a situation where they feel that way? I wouldn’t. I know that because I didn’t.
It’s one thing to see a crappy joke from a comedian who thinks they’re being brilliantly original (they never are) or the mundane, and almost expected, ‘diabetes on a plate’ throwaway line in a cooking show, but while these incidents can be damaging, they are very different to having stigmatising comments and behaviours directed at an individual as is often the case when it is from a HCP.
Of course, HCPs aren’t immune to the bias that forms negative ideas and opinions about diabetes. In the same way that people with type 1 diabetes form these biases because those misconceptions are prevalent in the community, HCPs see them too. Remember this slide that I shared from a conference presentation?
This came from student nurses. Just think about that. Students who were training to be HCPs who would inevitably be working with people with diabetes. A I wrote at the time:
‘They hadn’t even set foot on the wards yet as qualified HCPs. But somehow, their perceptions of people with diabetes were already negative, and so full of bias. Already, they have a seed planted that is going to grow into a huge tree of blaming and shaming. And the people they are trusted to help will be made to feel at fault and as though they deserve whatever comes their way.’
Is it any wonder that, with these attitudes seemingly welded on, that people with diabetes are experience stigma at the hands of their HCPs?
The impetus can’t only be on PWD to call this out. And the calls to fix stigma can’t exclusively rest on the shoulders of PWD – we already have a lot of weight there! It must come from HCPs as well – especially as there is such a problem with this group. Perhaps the first step is to see real acknowledgement from this group of their role here – a mea culpa from professional bodies and individuals alike. Recognising that no one is immune to the bias is a good step. Owning that bias is another. And then doing something about it – something meaningful – is how we make things better for people with diabetes. I really hope we see that happening.
More about this:
Becoming an ally – how HCPs can show they’re really on our side.
Ask a group of people with diabetes about their experiences of stigma, and for examples of the sorts of things they’ve heard and before long you’ll be able to compile a top ten list of the most commonly heard misconceptions that have contributed to diabetes having an image problem. When I’ve asked about this recently, the main perpetrators of these seemed to be healthcare professionals. More on that later this week.
This year, in the Diabetes Australia National Diabetes Week campaign about diabetes-related stigma, two videos have been produced and they’re almost like a highlight reel of some of the stigmatising things people with diabetes hear.
Let me tell you something I found really interesting. As part of the testing of these, I showed them to a heap of people with diabetes and a heap of people without diabetes. The reaction from people with diabetes varied from sadness (including tears), to anger and frustration, and mostly, recognition in everything they saw.
The reaction from a number of people without diabetes was disbelief that this really happens. They simply couldn’t believe that people would be so insensitive; so cruel, so shaming.
However, for so many people with diabetes, this is our reality.
Here’s one of the two videos we produced. (You can watch the second one here.) Already, this is being shared widely in our own diabetes community. I’ve lost count of the places online I’ve seen this shared. Keep doing so, if you can. Because clearly, we need to get the message out to those without diabetes so they understand that not only is this sort of stigmatising behaviour harmful, but it is also horribly common. And it needs to stop.
DISCLOSURE
I work for Diabetes Australia, and I have been involved in the development of the Heads Up on Diabetes campaign. I’ve not been asked to share this – doing so of my volition, because I think the messaging is spot on. The words here are my own, and have not been reviewed prior to publication.
I don’t know too many people living with diabetes who haven’t experienced stigma. I know I certainly have. In twenty-three years of living with diabetes, it’s come from all directions: the media, healthcare professionals, work colleagues and even family and friends. That’s because people outside the diabetes community often have pre-conceived ideas about what diabetes is all about, and a lot of those ideas are plain wrong.
But stigma doesn’t only come from outside the community. In fact, for some people with diabetes, some of the most harmful and hurtful experiences of stigma has actually come from other people with, or affected by, diabetes. [Click here to read more…]
DISCLOSURE
This piece was published today on the Diabetes Australia website, and I wrote it as part of the organisation’s National Diabetes Week campaign on diabetes stigma. I work for Diabetes Australia, and am sharing this because I’ve chosen to – not because I’ve been asked to. The words here are my own, and perhaps the only thing missing from the published text is some of the decorative language I often use when speaking about diabetes-related stigma. Bottom line – all stigma sucks. Let’s #EndDiabetesStigma now.
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.
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?
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.
That time I wrote about this (and then a HCP misread it as me saying PWD don’t need to know what type of diabetes they have. It doesn’t say that…)
That time I owned my own shitty behaviour.
That time I wrote about how heavy diabetes stigma is.
Last night, my gorgeous friend Andrea tweeted how she had seen someone wearing a CGM on the streets of Paris. When she rolled up her sleeve to show him her matching device, he turned and walked away. ‘Guess you can’t be best friends with every T1D’, she wrote. ‘Diabetes in the Wild’ stories have been DOC discussion fodder for decades – including wonderful stories of friendships being started by a chance encounter, and less wonderful stories such as Andrea’s most recent encounter. I was reminded of the many, many times pure happenstance of random diabetes connection has happened to me.
There was the time I was waiting for coffee and another person in line noticed my Dexcom alarm wailing, and the banter we fell into was so comfortable – as if we’d known each other forever!
And that time that someone working the till at a burger flashed her CGM at me after seeing mine on my arm and we chatted about being diagnosed as young adults and the challenges that poses.
Standing in line, queuing for gelato, is as good as any place to meet a fellow traveller and talk about diabetes, right? That’s what happened here.
And this time where I spotted a pump on the waistband of a young woman with diabetes, and started chatting with her and her mother. The mum did that thing that parents of kids with diabetes sometimes do – looking for a glimpse into her child’s future. She saw that in my child, who was eagerly listening to the exchange. But I walked away from that discussion with more than I could have given – I remember feeling so connected to the diabetes world in that moment, which I needed so much at the time.
I bet that the woman in the loos at Madison Square Garden wasn’t expecting the person who walked in at the exact moment she was giving herself an insulin injection to be another woman with diabetes. But yeah, that happened…
I’ll never forget this time that I was milliseconds from abusing a man catcalling me out his car window, until I realised he was yelling out at to show me not only our matching CGMs, but also the matching Rockadex tape around it. My reaction then was ridiculous squealing and jumping up and down!
Airports have been a fruitful place to ‘spot diabetes’, such as the time my phone case started a discussion with a woman whose daughter has diabetes, except we didn’t really talk about diabetes. And the time another mum of a kid with diabetes was the security officer I was directed to at Amsterdam’s Schiphol Airport. She was super relaxed about all my diabetes kit, casting her eyes over it casually while telling me about her teenage son with diabetes.
The follow up to this time – where I introduced myself to the young mum at the next time who I overheard speaking about Libre, and saying how she was confused about how it worked and how to access it – but not really being all that sure about it, is that she contacted me to let me know that she’d spoken with their HCP about it, had trialled it and was now using it full time. She told me that managing diabetes with toddler twins was a nightmare, and this made things just a little easier.
Sometimes, seeing a stranger with diabetes doesn’t start a conversation. It can just an acknowledgment, like this time at a jazz club in Melbourne. And this time on a flight where we talked about the Rolling Stones, but didn’t ‘out ourselves’ as pancreatically challenged, even though we knew …
But perhaps my favourite ‘Diabetes in the Wild’ story is one that, although I was involved, I didn’t write about. Kerri Sparling wrote about it on her blog, Six Until Me. Kerri was in Melbourne to speak at an event I was organising, and one morning, we met at a café near my work. We sat outside drinking our coffees, chatting away at a million miles an hour, as we do, when we noticed a woman at the next table watching us carefully. We said hi, and she said that she couldn’t help listening to us after she heard us mention diabetes. She told is her little girl – who was sitting beside her, and was covered in babycino – had recently been diagnosed. I will never forget the look on the mother’s face as two complete strangers chatted with her about our lives with diabetes, desperately wanting her to know that there were people out there she could connect with. I also remember walking away, hoping that she would be okay.
Five years later, I found out she was okay – after another chance encounter. I was contacting people to do a story for Diabetes Australia and messaged a woman I didn’t know to see if she, along with her primary aged school daughter would be open to answering some questions. Turns out, this was the woman from Kerri’s and my café encounter. She told me how that random, in the wild conversation made her feel so encouraged. She said that chance meeting was the first time she’d met anyone else with diabetes. And that hearing us talk, and learning about our lives had given her hope at a time when she was feeling just so overwhelmed.
I know that not everyone wants to be accosted by strangers to talk about their health, and of course, I fully respect that. I also know there are times that I find it a little confronting to be asked about the devices attached to my body. But I also know that not once when I’ve approached someone, or once when someone has approached me has there been anything other than a warm exchange. I so often hear from others that those moments of accidental peer support have only been positive, and perhaps had they not, we’d all stop doing it. It’s a calculated risk trying to start a conversation with a stranger, and I do tread very lightly. But I think back to so many people in the wild stories – the ones I’ve been involved in, and ones shared by others – and I think about what people say they got out of them and how, in some cases they were life changing. A feeling of being connected. The delight in seeing someone wearing matching kit. The relief of seeing that we are so alone. The sharing of silly stories, and funny anecdotes. And in the case of that mum with a newly diagnosed little kid, hope.
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.
There have been a number of times here on this blog and in other online platforms that I have been critical about the low carb community. Actually, let me be more specific. I have been critical of the response from certain corners of that community, particularly the corners that are free with their fat shaming, and accusing people with diabetes who choose not to eat low carb as not caring about their health, and attacking others for daring to suggest that there could possibly be more than one way to eat. This has come from a long list of incidents I’ve either seen or have been involved in, such as the time I was fat shamed for saying that intermittent fasting is great for some, but not for everyone, and the time that people in the LC community got angry at the idea of saving the lives of children with diabetes from developing countries.
I guess I shouldn’t have been surprised really at what happened earlier this week just before I published a post on diabetes and menopause. As I often do, I look to the community for others’ experiences. And so, I tweeted (and shared on Facebook) this:
The responses were many and great. One aspect of the generosity of the DOC is the willingness and openness to share not only experiences, but to offer tips and tricks for what has worked for them. I’ve always found that so amazing, especially when addressing issues that are considered a little taboo. Menopause is one of those issues. But even so, there were so many replies from people who have either gone through menopause, or started to think about it.
And then, out of the blue, came a reply from a nutritionist. A nutritionist I have never encountered before. I don’t follow him on Twitter, I have no idea who he is. Which is all fine. My Twitter is public and if I ask a question everyone is free to offer their input. Here is his reply:
I replied that I am not a healthcare professional. And then came this:
Followed by this from me:
(I’m not going to share anymore of the tweets in what turned out to be a rather long back and forward thread, but if you click on any of the tweets above you will be able to find the whole mess.)
He kept going, demanding to know why I am critical of low carb diets and health professionals who promote them (which he apparently had deduced from reading through my Twitter feed). I’m not. Which is what I repeatedly tweeted to him in responses to his continued demands that I explain my stance on diets and diabetes, and, as a healthcare professional, I must stop giving ‘personality-driven healthcare advice’. I reminded him that, a) I am not a HCP (which I had already stated), and, b) I share my experiences, not give advice. He helpfully suggested that my blog posts read that way.
I had asked about menopause. I asked people with diabetes who had either been through menopause, were going through it now, or thinking about going through it. I asked whether it had been a topic of conversation with their HCPs.
This bloke – who doesn’t have diabetes and has never experienced menopause – had nothing to offer, other than attacking me for my choices. And my choice is that I believe in choice.
It’s not okay for a healthcare professional to enter into a discussion with a person with diabetes seeking peer support, and telling them what it is that they do and don’t do in that community. I am so over this sort of paternalism in healthcare. I’m over HCPs bullying their way into our community and trying to shape it into what they want.
I’d also add that a man hijacking a conversation started by a woman about menopause is pretty shitty behaviour. I’m also over misogyny and the way male healthcare professionals centre themselves in discussions that are not about them. It happens all the time. It happened on Monday.
A tweet about menopause. And not even about food and menopause! It sounds somewhat ridiculous really. I don’t look for this sort of reaction, and I certainly have never baited anyone from the LC community. I don’t post photos of high carb meals accompanied by a ‘dare you to say something’ comment. (But I should say, that even if people are doing that, there is still no valid reason to criticise what another person is eating** or criticise the way they choose to eat.)
I understand that there will always be difficult people in any community. Unfortunately, it is people like this who are often the most seen from the LC community. And it’s why I am critical. But be clear – I am not critical for the advice they are giving, or the eating plan they are following. I am critical of, and will continue to call out, this sort of behaviour.
**Okay, I know that I said that there is no valid reason to criticise what another person is eating. But I am adding a caveat to that because I do (and probably will continue to) criticise anyone who wants to drink flavoured coffee. Or instant coffee. Or coffee from a bag. I fully acknowledge and accept my status as a Melbourne coffee snob and will not be entering into any discussions that caramel, pumpkin spice or unicorn flavourings are okay. They are not. Don’t @ me.
Diabetogenic 