I’ve celebrated 28 years of diabetes in Rome by travelling all the way from Australia with enough insulin to last me ten days. I’m away for twenty-two days.
You see the problem.
I saw the problem when I was a quarter of the way into the long journey, changing my Pod. ‘Hmmm,’ I said when I saw the very limited insulin supply in my kit bag. ‘Not smart’. (These were not the words I actually said, but there’s no need to share the expletive-laden rant from the Qantas lounge.)
By the time I boarded, I’d sent out an SOS to three or four #dedoc° voices friends, and by the time I got to Singapore, my WhatsApp was full of kind offers of assistance, a prescription for insulin and a messages of ‘let’s meet up for coffee while you’re here. I’ll bring the insulin!’.
‘Our community is everywhere!’ I messaged Ana from Team #dedoc° after she checked in to make sure that I was okay. And it’s true. This is a real community of people who know each other and have each others’ backs. They reach out to their networks and together, the global coverage of #dedoc° friends is so very vast.
It should surprise no one that community is often the way to deal with whatever diabetes has to throw at us, or, in this case, to overcome my shortcomings. It certainly hasn’t surprised me.
A couple of weeks ago I was in Jaipur for the Summit to End Diabetes Stigma. It was the largest gathering of people with diabetes at a professional diabetes conference, facilitated and supported by #dedoc°. As I stood on the stage, looking out into the bursting conference room, I was overwhelmed by the faces of diabetes friends from the #dedoc° community. A community of dedicated advocates with only one thing in mind – to improve outcomes for people with diabetes in their communities. And I was reminded of what it is that #dedoc° offers – a platform on which others stand. No ownership; just the avenue to bring people together and centre lived experience. How lucky we are to have that. And so, it’s community I’m celebrating, along with my 28 years of diabetes. A balancing up-side in the shitshow that is diabetes.
Happy diaversary to me!
She’s looking far too relaxed for someone who packed 10 days of insulin for a 22-day trip.
You might think that a diagnosis of a new chronic health condition would be easier to navigate for someone with my understanding and knowledge of healthcare. And that with last year’s diagnosis of psoriatic arthritis (because it had been a while since I’d added a new autoimmune condition to the stable), that I would apply the same attitude that has worked with T1D.
I did do that. And it hasn’t worked. My first mistake was ignoring the very simple and basic fact that psoriatic arthritis is not type 1 diabetes. Most people probably would have realised that and not made assumptions. I am not most people.
I’ve been quite humbled by the overall experience.
I don’t have answers yet to how to manage this new(ish) condition. The pain is still persistent. The meds I was first prescribed did nothing other cause constant low-level nausea. I wouldn’t call it debilitating (the pain gets that designation at times), but it was unpleasant enough to make me feel bleurgh (technical term) a lot of the time. And to question whether drinking coffee was a good idea.
I have a limit to what I can take, and impacting my love of coffee hits that limit pretty quickly. I persevered for about six weeks with the meds and then decided that I’d had enough. The nausea wasn’t subsiding and the pain hadn’t improved at all. I had been told that it could take up to three months for the meds to impact the pain, so the fact that my hands still hurt pretty much every day wasn’t completely unexpected. I weighed up the pros and cons, and decided that I wasn’t prepared to add constant nausea and eating struggles to daily pain. And so, we went back to the drawing board.
At this point, I learnt about the rather technical little dance that needs to happen when it comes to the escalation of psoriatic arthritis drugs. From a rheumatology perspective, I have to give it three months before stepping up the ladder to the next type of medication. From a dermatology perspective, it’s only one month.
So, that meant I needed to see a dermatologist to prescribe the next drug. He announced that I had ‘failed drug 1’ and therefore would be able to try drug 2. After mentioning my failure three times, I politely interrupted and asked if we could perhaps reframe the conversation to say that the drug had failed me. I’m sure he rolled his eyes as I muttered something about language mattering, but he handed me a new prescription anyway.
But of course, it was never going to be a simple switch. My rheumatologist agreed that I’d been right to stop drug 1 due to the constant nausea. But she suggested we try an injectable version of it before stepping up to drug 2. Also, drug 2 is good for the psoriasis side of things, but less good for the arthritis side of things. ‘Keep that one in your back pocket for now,’ she said. We had a very brief discussion about the practicality of taking the injection, but we both kind of sped through that because we figured that twenty-seven years of T1D meant that injection technique and hygiene wasn’t something needing much attention.
I opened the first box of drug 1.2 on a Sunday night. In the box was one pre-filled, single dose syringe. I have never been needle-phobic, so, I wasn’t prepared for the involuntary gasp when I removed the cap from the syringe. The needle was not ‘just like an insulin sub-cut’ as I’d been reassured by the pharmacist and rheumatologist. It was significantly longer with a smaller gauge (smaller gauge = thicker needle). It looked scary. And needles do not scare me.
I sighed, pinched the skin on my leg where I could find a decent amount of fat and poke in the needle, pushing down the plunger, muttering ‘ouch’ for no good reason because it actually didn’t hurt. Appearances can be deceiving when it comes to needles.
This was all about four months ago now. Has it helped? Nope. Not at all. In fact, the side effects have been even worse. My weeks have taken on a new pattern: injection on Sunday night. Monday – Thursday: constant nausea (absolutely no appetite) plus exhaustion to the point of needing a late-afternoon nap. Friday: start to feel better. Saturday and Sunday: back to feeling normal. And then it starts all over again.
Meanwhile my hands still ached.
So, we’re moving onto a new drug. Will there be side effects? Maybe. Will I see an improvement in the pain situation? Maybe. Will I feel like I have some semblance of control over my health again? Who knows?
I don’t ever remember feeling this way with diabetes. Insulin just … worked. I mean, sure, there is the too much/too little thing that we all know about, but it does what it is meant to do. It lowers glucose levels.
But this has been entirely different and I feel quite naïve thinking that I was simply going to be given a drug to treat this ailment, said drug would fix said ailment, and then I’d just keep on taking it.
All of this has happened alongside managing diabetes and other health things that are constantly there. I’ve been fortunate that I’ve managed to find great healthcare professionals (albeit one who needs some work on his use of the word ‘failure’). My rheumatologist is absolutely delightful and understands my frustrations. I like a doctor who doesn’t tell me to push through or simply accept the lousy things. I appreciate her listening to what I want and knowing my priorities. And I like that she understands that this isn’t my first rodeo when it comes to chronic health conditions.
And yet, even with the great HCPs, and the drug options and the understanding a lot about health and healthcare I remain completely at a loss and humbled, because right now, I am not getting better. And being in pain is hard.
Apparently, there are half a dozen different drugs for me to try. And each one needs at least three months of trialling to see if it’s going to work. I don’t want to do the maths and think about how long it could take to find something that actually helps.
Who knew that all it would take for T1D to seem easy was a new autoimmune condition? Or perhaps it’s just that almost twenty-eight years of T1D-wrangling has lulled me into believing I know what I’m doing. I guess it’s all relative. I know that really, I am generally #NotGoodAtDiabetes (let me count the ways), but compared to dealing with this new condition, I’m actually brilliant. How utterly humbling.
Sunday is Feminist Christmas*. It’s the day that social media feeds turn pink and women get celebrated with morning teas (organised by women) and the lady folk are handed a cupcake (made by women) to shut us up and make us forget that women continue to live in a world designed and defined by patriarchy.
Isn’t that a joyful start to this article? I’ll wait while people shift uncomfortably and refer to me as an angry/difficult woman.
In the coming days in the diabetes world, you’ll see posts pointing to women in the diabetes landscape. These women are generally remarkable and doing great things. But oddly, rarely are the women whose faces appear on a social media carousel actually living with diabetes. A few years ago, I pointed out that while we should be recognising the clinicians and researchers improving our lives, women with diabetes are completely ignored.
So, a little hint to anyone who is putting together content for next week: don’t forget to also highlight the women with lived experience of diabetes who are actually doing so much of the work in our community. Those grassroots initiatives that continue to be life saving and life changing are very often powered by women with diabetes. And, as is often the case, these women do this work on a volunteer basis. All while managing a very demanding chronic health condition on top of all the other work women do.
Back when Twitter was less of a hellscape.
In the meantime, you should all register for this year’s DiaLeb Annual Diabetes and Women Panel. This is the 7th year and I’m very excited to be on the panel with two remarkable women living with diabetes, and another two women with loved experience of diabetes. Be quick! It’s tomorrow!
Click to register
Seriously, women with diabetes are brilliant. we deserve way more than a cupcake. But I’ll take one all the same if some bloke would like to organise it.
So what has been occupying your minds over the first few weeks of the year? Well, for a while there (and still), mine was trying to understand the veritable PR disaster of the Adelaide Writers Week (AWW). Niche? Yes. Relevant to diabetes? Also yes. In a roundabout way.
Let me set the scene. A writers festival in Australia was cancelled after one of the speakers had her invitation rescinded. The simple explanation of this is that the speaker, academic and author Dr Randa Abdel-Fattah had made some comments on social media that were deemed controversial by the AWW Board. More concerning, they connected these comments with the shootings in Bondi in December last year, effectively associating Dr Abdel-Fattah with the shooters. I’m actually not here to comment on Dr Abdel-Fattah, other than to say her treatment was appalling. There has been a lot of commentary, and if you’re not from Australia (or are from Australia but somehow managed to miss it) simply google AWW for details of what happens when decisions are made without consultation or understanding of the affected community.
I specifically want to focus on one part of the whole saga and that is the decision makers responsible for the PR nightmare. The Board of the Adelaide Festival (who is also responsible for the AWW) made the decision without the support of AWW director, Dr Louise Adler AM or her team. Dr Adler, in a letter published in the Guardian after she resigned from her role highlighted that the board was ‘composed of individuals with little experience in the arts ‘, which lead to decisions being made without cultural context and an absence of understanding consequence.
Even before I’d read Dr Alder’s compelling and commentary, the conversations I was having with friends and family were homed in on the same themes. We knew that the other writers at the festival would withdraw from the festival, one by one. We knew that Dr Adler had been treated terribly. And we were waiting for the gaslighting that would come from the Board, and anyone else involved in the decision making.
We knew, because we are a family of artists. My husband is a professional musician. My daughter is studying writing and journalism and has a part time job writing for a local newspaper. I studied music at university. Our friends are musicians, composers, writers, film makers, makers and journalists. We’d had discussions with many of them about how the Board’s lack of understanding of the arts sector, the way the community would respond, and how the community would be impacted. The words I used were ‘They have no skin in the game’, and by that I meant that not only couldn’t they see what was coming, they could also walk away relatively unscathed. Their careers were unlikely limited by their involvement in the decision and even though the entire board resigned, I would bet that it hasn’t made a dent professional standing or income.
Yet it wasn’t the arts scene that was the focus of my thoughts when I considered the AWW board, the decisions they made, the lack of insight into community response or the inevitable and highly predictable fallout.
It was, of course, diabetes.
I found myself wandering around the house and on daily walks muttering ‘Nothing about us without us’ with a growing frustration that this lesson keeps having to be learnt the hard way.
It may be different communities and different contexts, but we’ve seen similar incidents play out just like this in the diabetes world for years. People with diabetes are not included in decision making processes. But then sit there, watching the fall out.
The process is the same. The positioning from the people making decisions is the same. Think about some pretty ridiculous diabetes decisions in recent years and think about who made them, and who wasn’t consulted. Think about the fallout from a particularly nasty diabetes campaign that adds to diabetes-related stigma. It’s with disbelief that I think back to campaign discussions when I was told outright that offending and upsetting people with diabetes when a campaign launched was the price to pay because we weren’t the intended audience, as if we would be magically shielded from the stigmatising messaging. And that it was an unintended consequence in efforts to inform the general public.
Those gaslighting me weren’t going to be in the firing line next time someone made some horrid comment about diabetes. It wasn’t their weekend that was going to be ruined when some smartarse in a supermarket queue or café said something about sugar causing diabetes or personal responsibility or how diabetes is a ticking time bomb.
When a decision is made that directly impacts people’s lives, surely those people should be in the room, at the table and have their voices heard the loudest. Surely. It’s so frequently not the case when diabetes decisions are made. It wasn’t the case when the AWW Board decided to cancel Dr Abdel-Fattah’s speaking engagement.
And so, the AWW was cancelled after almost all the writers on the program withdrew and the Board resigned. Interestingly, most of the Board members sit on other boards, so their status as ‘leaders’ and ‘decision makers’ doesn’t seem to be too impacted. Meanwhile, those writers have lost one of the few (and seemingly shrinking) opportunities to meet to share ideas and celebrate their community. Their incomes have been impacted. The chance to get their work in front of an audience has disappeared.
Nothing about us without us. It seems that this little catch phrase has been ignored too often, unless being used in convenient and cute attempts to demonstrate (usually lacking) community engagement. Instead, maybe it’s time to put us on boards and in leadership and decision-making positions. Maybe it’s time to actually listen to the people who know. Because our skin? It’s the one in the game more than anyone else’s. Raw, exposed and in the firing line.
It’s been a hot minute, hasn’t it. And by ‘hot’ I mean sweltering here in Melbourne. While my friends in the northern hemisphere are sharing snow photos, we’ve been dealing with days in the high 30s and 40s. (For my US friends – we hit almost 120°F this month. It was not nice.)
Anyway, now that the weather discussions are over, let me wish you all a belated happy new year. I’d like to say that I hope that your start to 2026 has been gentle and kind, but instead, picture me gesturing wildly at the world and shaking my head in despair.
I finished up 2025 feeling pretty damn exhausted and burnt out. But, really, who wasn’t feeling that way? There was a lot of good stuff that I could look back on, but the never-ending travel wore me out. I feel compelled to say that I know I am fortunate to do the work I do, and I love my job. Being able to work with people in the diabetes community who are making real change is a gift every single day. I would just be so happy if someone could find out a way for Australia to not be a 30-hour trip away from most of the places I need to visit.
I was lucky to have a three-week break over the Christmas/New Year period where I travelled no further than 5kms from my house, and I’ll have had a 10-week hiatus before I next find myself in an airport. Both of these breaks feel like a luxury!
But as we gear up for 2026, it’s undeniable that the global health world is in a mess and diabetes is not immune to that. I’m really pleased that some of my work will involve addressing issues that are important to people with diabetes. I’m beyond honoured to have been invited to give the Anita Carlson lecture at this month’s Psychosocial Aspects of Diabetes (PSAD) Conference (even happier that it’s being held in a regional city in my state and I only have to drive for an hour to get there!). I’ve called my lecture ‘Building Diabetes Healthcare from the Ground Up’ and it’s given me an opportunity to imagine just what diabetes healthcare could be if people with diabetes were actually centred and involved in its creation.
Next month the first Global Summit to End Diabetes Stigma is being held in Jaipur, India. Can you imagine hundreds of people with or working in diabetes coming together in one place to come up with meaningful and real strategies to end stigma? For disclosure purposes, this event is being funded via a grant from Breakthrough T1D (I work there), and I am involved in the planning of the event. It feels like a culmination of a lot of efforts highlighting the impact of stigma to get to a place where the diabetes world is ready to collaborate to end it. I’m so thrilled to be working for the organisation that has recognised that.
For me right now though, there is an overarching feeling that the world really is burning. While the US gets a lot of our attention, diabetes healthcare and access to insulin and care remains incredibly lacking in other parts of the world. As always, the most vulnerable in our world are impacted the most negatively. I don’t know about you, but a lot of the time I feel helpless.
Now it’s February, you may have once again seen that the annual Spare a Rose campaign has started. I think this is the fourteenth year of the campaign. I think back to what the diabetes community was like when Spare a Rose first started, and honestly, it feels very different to what we have today. I don’t know if a campaign like this would be started in today’s community. In fact, sometimes I find it harder and harder to find community and advocacy these days, as “influencer culture” takes hold.
And so, it’s worth remembering where Spare a Rose came from and the intentions behind it. It was a group of advocates in the US who wanted to give back somehow. I should point out that the advocates who started Spare a Rose had already given so much to the community. Many of them have taken a back seat to front-facing advocacy efforts but their legacies live on, even if fewer and fewer people see how they shaped the DOC. It’s diabetes advocates who have driven this campaign over the years and made sure that it has remained in the view of people with diabetes.
I have always loved the simplicity of Spare a Rose. The donation being asked for is small – US$5. For those needing a refresher, the idea is to give your loved one eleven rather than twelve roses and donate the saving to the campaign. In our house, we forgo flowers completely and recognise that empty vases are a small price to pay for making a donation to the value of a year’s worth of insulin.
I know that many are doing it tough these days. I also know that a lot of people who would have donated without a second thought in the past are unable to do so now due to changes of circumstances in so-called high-income countries.
But if you can support Spare a Rose by making a donation, please do. All funds go directly to the brilliant charity Insulin for Life, and each contribution makes a difference to a person with diabetes in a low-income country. If you can’t make a financial contribution, please share the website across your networks. Someone else in there might be able to donate. Every single dollar counts.
ISPAD has led the way when it comes to including people with lived experience of diabetes at their annual meeting. It was the first conference to work with #dedoc° to have a voices scholarship program. The society has included people with diabetes on the organising committee for some time. ISPAD has awarded the ‘Hero Award’ which recognises the work done by people in the community. And the conference scientific program involves people with diabetes speaking and chairing sessions.
And so, it was interesting to hear someone ask at last week’s meeting in Montreal whether there should be a limit to the involvement and number of people with diabetes.
I wasn’t actually in that session, but I certainly heard about it from many others. People seem to expect me to have words to say about these sorts of questions. Turns out I do – and so do other people. And there was quite a bit of discussion – both at the conference, and in an online group after I shared the question with members.
While the question may have been well intended, (I certainly don’t believe there was any malice in asking), it did make me bristle. The idea of limiting access to a diabetes conference to people with diabetes has never sat well with me. It reeks of gatekeeping. And it also sends the message that people with diabetes are ‘allowed’ at the discretion of others rather than having a right to attend.
I think that quantifying the number of any sort of participant is problematic, but I have always liked this pie chart drawn and tweeted by James Turner (@jamesturnereux, although he appears to no longer be on the cesspit site) from a Medicine X conference in 2017. I am pretty sure that I have already shared this somewhere in the #diabetogenic archives, because I think it’s great! What I like about this is that it recognises that everyone has an equal place to be there. That equilibrium does sit well with me!
I also like the comment from my friend, and researcher and fabulous diabetes advocate, Ashley Ng. We caught up today to discuss this issue, and she said ‘I don’t agree with a maximum, but I do think we need minimum representation by people with lived experience’.
But this isn’t just a matter of representation, and it’s not simple either. There is the broader issue of people with diabetes wearing more than one hat. Some may also be researchers, clinicians, involved in technology development, industry representatives and more. This certainly does point to the complexity of the ecosystem. When looking at the number of people with lived experience of diabetes, we draw the cohort from many different spaces.
But this in itself adds to the intricacies of the situation. In fact, it is something that I have spoken and written about for decades (most recently here) and my position is very clear, albeit not especially popular with everyone. I believe that people with lived experience who wear no other hat in the healthcare space must be prioritised for positions centring lived experience at conferences, in panels, on advisory groups and anywhere people with diabetes are intended to be represented. Why? Because these are usually the ONLY way for us to get a seat at the table. Those wearing other hats may find themselves able to access other pathways via their employment or professional settings.
This is why #dedoc° generally doesn’t offer scholarships to healthcare professionals and researchers. The voices program is for people with diabetes who otherwise would not be able to find a way to attend conferences and who don’t have other prospective funding opportunities. I am aware that HCPs and researchers have limited opportunities available to them, but there are funding streams and grants, and institutional supports that are simply not open to people with lived experience who do not have any professional affiliation. Of course, (and it shouldn’t need to be said, but I’ll say it anyway), I’m not minimising the experiences of those who bring both professional and personal perspectives. But there are so very few opportunities for people with diabetes who represent as community members only to find a seat at the table. Those seats should not only be reserved for us, but we should all work to protect them.
It would be remiss of me to not point out that there are indeed unique challenges for people who straddle the professional and lived-experience divide. This article (I am a co-author) was written by people with lived experience of diabetes and wearers of other hats and addresses some of the issues faced by people in this situation.
These discussions are always interesting, but they can be uncomfortable. And also frustrating. I would hope that we are far along the lived experience inclusion road to not have to justify the rights of people with diabetes to be part of conferences and other efforts. And rather than even suggesting gatekeeping, we should be looking at more ways to make access to these spaces easier, and focused on diversity of voices. Chelcie Rice says we should bring our own chair if there isn’t one already for us. I say, bring two or three and the people to fill them too. But honestly, we should be beyond that now, right? We should simply be able to walk into any space and take a seat.
Disclosure
ISPAD invited me to speak at this year’s meeting and covered by accommodation costs. Travel was part of my role at Breakthrough T1D.
How are we all doing this Diabetes Awareness Month? Are you feeling it? Or are you already over it – even though we’re just out of the first week, and the long haul is still ahead of us?
I’m on my way home from the ISPAD meeting. I’m at Montreal airport and I have another thirty hours ahead of me before I walk in the door home. I’m tired. But I’m energised. The privilege of spending a few days with diabetes advocates will do that.
Sitting here in the airport lounge, I opened Instagram and saw a post from Breakthrough T1D Advocacy. (And a little disclosure that I work in the Global Responsibility team at Breakthrough T1D.) The first slide was the statement ‘Why I Advocate’, and the following tiles shared responses from community members. I’m so annoyed I hadn’t seen this post before I got to ISPAD, because I would have loved to ask the #dedoc° voices their reasons for being such fierce and impactful advocates.
So…why do YOU advocate?
My answer? I advocate because I don’t know any other way to live with diabetes. Every day with diabetes is an act of advocacy. Some days that adds a burden that casts a very dark shadow, but some days it’s just life with diabetes. The wonderful Linxi Mytkolli introduced herself during her presentation at the #dedoc° symposium this week with ‘My full time job is managing my diabetes’, and then she went on to talk about her day job.
That’s diabetes: two jobs in one life.
While we may need to advocate all the time to simply live with diabetes, that doesn’t mean we need to be outspoken in the way we do it. It doesn’t mean we need to speak up or speak loudly or speak to rooms full of people. I hope people understand that advocacy can be on their terms, in their space, in their own way.
This week, my way has been to stand on the stage at ISPAD and talk about how research is one of the ways to end diabetes stigma. It was to amplify the #dedoc° voices and very loudly remind anyone who would listen that people with diabetes belong anywhere diabetes is being discussed. It was to chair two sessions which featured people with lived experience of diabetes speaking about their advocacy efforts.
And my way has also been a discussion in the airport lounge just ten minutes ago after changing my Omnipod and the person next to me wanted to chat about what I was doing. They were polite… ‘Do you mind me asking,’ they started. And no. In that moment, I didn’t. It felt light to share and answer questions about costs and advocacy initiatives to reduce those costs. It felt good to gently set the record straight when they said that diabetes was everywhere and it would just be better if people ate whole foods. And it felt positive when their response to me pointing out that stigma harms was, ‘I had no idea and I’ll be more careful about what I say’.
Two jobs. One life. Every little act of advocacy. Every little act of diabetes. Every single day.
Advocating at ISPAD
Disclosure
ISPAD invited me to speak at this year’s meeting and covered by accommodation costs. Travel was part of my role at Breakthrough T1D.
My dad has always taken his parenting duties very seriously, and as such, he made sure that by the time I was ten years old, I had watched and rewatched all Marx Brothers movies to the point that I was able to recite the scripts word for word. I can’t tell you how many times I’ve watched ‘A Night at the Opera’, but it’s probably that movie and not twenty years of classical music training that means I can sing along to most of Il Trovatore.
My mum has never been a fan of the Marx Brothers. She’d roll her eyes while we were rolling around on the floor in fits of laughter, shaking her head and muttering that she simply didn’t understand what we found so amusing.
Does this mean she doesn’t have a sense of humour? Of course not, contrary to dad’s constant suggestion of as much. Mum regularly shares killer memes and jokes that are laugh out loud hilarious. It’s just that the Marx Brothers have never made her laugh (weirdo).
This showed me that people laugh at different things. One person’s funny bone tickler is another’s shrug of utter indifference.
One thing I learnt pretty early on when I started hanging out in the global online diabetes community is that humour is a really important coping mechanism for living with the condition. It makes sense, right? I mean, there are some pretty grim aspects of life with T1D, and having a laugh can lighten especially dark days, and help us keep perspective when things feel overwhelming.
Back in the OG DOC days, there were awards given to writers and people on social media, and one of the award categories was humour. I’ve tried to inject some humour into this blog over the years – you can be the judge how successful I’ve been. Read to the end and you’ll see I’ve linked to some posts where I tried to use jokes and humour to keep things a little lighter.
Sometimes, however, attempts at humour don’t land all that well. Or they land at the expense of others. And when that’s the case, I think we need to stop for a minute and check ourselves. Is it worth getting a laugh when you are punching down?
I don’t think so – especially because the result of punching down is often stigma. And we all know how I feel about that. Right? RIGHT?
None of this is new from me. I’ve been talking about how when people stigmatise any type of diabetes, we all suffer. I’ve been pretty blunt when calling out the T1D community for being outright nasty about people with other types of diabetes, especially people with T2D. The stigma we experience is a direct result of misinformation and ignorance about all types of diabetes. Contributing to it is not only nasty, but it is also voting against our own interests.
This post today has come about because over the last 24-hours a T1D Facebook group that I’m a member of has been embroiled in a fiery debate because one of the group’s moderators posted a meme that stigmatises type 2 diabetes. I’m not sharing the meme here, (because why would I add to diabetes stigma?) but I can describe it by saying that it highlighted a risk factor of T2D in a very stigmatising way. It was unoriginal, unamusing and unkind.
And it got messy. A number of people asked for the meme to be removed. Many were upset and found it offensive.
The moderators of the group doubled down. There were demands to scroll by and reminders that we were not there to ‘defend’ other types of diabetes. Comments pleading for the post to be removed were deleted and people were told they ‘Can’t take a joke’. I asked a few times for someone to please explain the ‘joke’, because I didn’t understand it. No one was able to do that. My comments were deleted anyway.
It astonishes me that the moderators of this group have chosen the hill they want to die on to be that it’s okay to stigmatise T2D and people should get over it if they don’t like it. They must have spent hours deleting comments and telling people to ‘get over themselves’. They repeatedly pointed out that the group is a T1D meme group with what seems an assumption that all people with T1D are happy for there to be nasty memes about T2D. Reassuringly, that’s not the case. A lot of people with T1D in the group are not impressed about the stigmatising posts and pop their heads above the parapet to let that be known.
A T1D meme page could be a source of joy, amusement, unity and some pretty clever humour, but instead, this group seems to regularly descend into bickering about what’s a joke and what’s just plain cruel, because many people with T1D don’t want to see T2D stigmatised or for misconceptions to be perpetuated. I’m one of those people.
And yes, I know that I can just leave the group. But one of the other things my dad, (and mum) taught me is that the standard you walk by is the standard you accept, and posting crappy, stigmatising, false and outright mean things about people with any type of diabetes is not a standard I accept. I call it out – regardless of who it is posting it.
I also want people to understand that these sorts of posts contribute to not just stigma about T2D, but to stigma about T1D as well. It constantly befuddles me that people who defend the right to be nasty and stigmatising about T2D are the same people who are up in arms when someone says something incorrect or stigmatising about T1D. The intellectual disconnect that can’t join the dots between the two issues is really something!
We can do better as a community. There are brilliant stories, jokes, and moments of wit that are truly hilarious, and we should be able to laugh about the shared absurdities and frustrations of life with T1D. But we can do it without throwing another group of people under the bus.
I laughed way more than I should have at this T1D meme.
Want to see some truly funny things?
Watch Melissa Lee’s D-Parodies. Truly brilliant and hilarious.
Spoonful of Laughter from the team at dStigmatise brings comedians together to show how we can laugh about diabetes, and check stigma at the door.
Sam Morrison is one of the featured comedians on A Spoonful of Laughter and you can follow him, here.
Miss Diabetes manages to address some pretty serious issues around diabetes using her fabulous comics and artwork.
His Instagram handle is @type1comedian, and he’s damn funny! I’m not sure if any of Chelcie Rice’s stand up is online, but search for it and see if you get lucky.
Do you remember life before diabetes? It’s getting harder and harder for me to. I had 24 years without diabetes, and occasionally, I’ll look at a photo from the BD years and think about how much simpler my days were.
Today, I’m wondering how much I remember diabetes before I started using automated insulin delivery (AID). It’s been eight years. Eight years of Loop. Happy loopiversary to me! Diabetes BL (before Loop) felt heavier. And scarier. I remember those months just after I started looping and how different things felt. I remember the better sleep and the increased energy. I remember a lightness that I hadn’t experienced since I was diagnosed.
That’s now my “diabetes normal”. Life with Loop is simply easier than life BL. On the very rare occasions I’ve had to DIY diabetes, it’s been a jolt as I’ve realised just how truly bad I am at diabetes. Embarrassingly bad.
While there was a stark difference back then between people who were using DIYAPS and those who were using interoperable devices on the market, today that difference is less. AID systems are not just for people who choose to build one for themselves. These days, it’s so great to know that there are commercial systems available which means more people have access to AID. We can debate which algorithm is better or whether a commercial or an open-source system is better, but I think that’s a little pointless. If people are doing less diabetes and feeling happier, better and less burdened, it doesn’t matter what they’re using. Your diabetes; your rules!
Eight years on, and despite there being commercial systems I could access, I’ve decided to keep using Loop – the same system I started on 8 years ago. The changes I’ve made are the devices with which I am using Loop. My pink Medtronic pump has been retired, along with the Orange Link (which was obviously in a pink case). Instead, I now use Omnipod, a single device instead of two which has further simplified my diabetes. It’s also meant not worrying about a working back up Medtronic pump, and it means carrying less bulky supplies when travelling.
These may all seem like little things, but they add up.
My decision to not move to a commercial system has been based on a couple of different reasons. I always said that I wouldn’t move to something that required a trade-off whereby any of the convenience of Loop was compromised. I’ve been blousing from my iPhone or Apple watch since 2017, and I refused to let that go. In my mind, having to wrangle my pump from my bra or carry an additional PDM to bolus was a step backwards. Of course, this is now available on some commercial systems, and it’s been super cool to see diabetes friends have access to something that does make diabetes a little less intrusive.
The customisability of Loop has meant that my target levels are set by me and me alone. The lower limit on commercial systems is not what I like mine set at. I wasn’t prepared to sacrifice the flexibility of personalised settings fora one-size-fits-all approach.
I do understand that there are pros to having a commercial system. Having helplines to trouble shoot and customer support on call is certainly a positive. Knowing that an annual Loop rebuild (always anxiety inducing because …well, technology?) is upcoming is stressful. And the worry that the update will break something that’s been working perfectly.
And yet, measure for measure, the decision to continue to use Loop has been very easy.
I still thank the magicians behind open-source technologies for their brilliance and generosity every single day. I’m grateful for the algorithm developers, the people who have written step by step instructions that even I can follow, and I am so thankful for the people who have tried to make devices more affordable. I believe that device makers do genuinely want to make diabetes simpler and help ease the load of diabetes. But in my mind, it’s undeniable that user-led developments have been more successful in actually making diabetes easier. These magicians know firsthand just what it means to claw back from diabetes.
In the end, the goal for me has always been clear: I want diabetes to intrude in my life as little as possible, and I will avail myself of anything that helps. It’s why I continue to use an Anubis even though there is no out of pocket cost for G6 transmitters. Using an Anubis means I change my sensor when it’s getting spotty, not when the factory setting insists, and the transmitter last six instead of three months. See? Fewer diabetes tasks. Less diabetes. That’s the whole point. (And it’s also why I’m hesitant about moving to G7)
When I try to quantify how much less diabetes, I just come back to Justin Walker and his presentation at Diabetes Mine’s DData back in 2018 when he said ‘By wearing Open APS, I save myself about an hour a day not doing diabetes’. Eight years down the track, that’s 2,922 hours I’ve gained back. That’s almost 122 days. It may be thirty seconds here, a minute there. But it adds up. And that time is better in my pocket than in diabetes’.
And so, here I am. Eight years on. With diabetes in the background as much as it can be with the tools I have available to me. I still really don’t like diabetes. I still really resent it takes up the time and brain space it does, and I still want a cure for all of us. Damn, we deserve that.
But in the meantime, I’m going to keep leaning into what the community has done for the community and know how lucky I am to benefit from that knowledge and expertise. Never bet against the T1D community. We know exactly what diabetes takes from us every day. And exactly what it takes to give some of it back.
Seemed like an appropriate day to reprise this oldie.
As ever, I’m very aware of my privilege. Access to AID is nowhere near where it should be. If we look at the Australian context, insulin pumps remain out of range for so many people with T1D thanks to outdated funding models. Remember the consensus statement developed last year? And beyond our borders, technology access varies significantly. As a diabetes community, we are not all beneficiaries from this tech until every single person with diabetes has access. And that starts with affordable, uninterrupted access to insulin, right through to the most sophisticated AID systems, to preventative treatments, to cell therapies.
Yesterday, I awoke to social feeds flooded with images of a doll in a blue polka dot dress standing against a very recognisable shade of pink. Hi Barbie! But this one was different. This Barbie was wearing diabetes devices – and they were proudly on display.
American Girl did this a few years ago with a diabetes accessories kit. And T1D Barbie isn’t the first doll to be living with a chronic health condition or a disability. In recent years, Mattel has released a Barbie with a wheelchair, a Barbie that is blind, a Barbie with a prosthetic leg, a Barbie with hearing aids and a Barbie with Down Syndrome.
The launch was huge! In sync, Mattel and Breakthrough T1D celebrated the new doll with a pitch perfect media roll out. I could see just how meaningful this was to kids with diabetes. And adults with T1D too! I admit to squealing a little when I saw her pink pump (just like the pink pump I wore for the first 6 years I was looping) and her heart-shaped CGM over patch. I’ve worn one just like that! (And have the photo to prove it.)
It wasn’t just diabetes media that picked up the story. Type 1 diabetes Barbie was everywhere! And the stories were positive – T1D representation is important and matters. Which makes sense – seeing toys reflect diabetes helps normalise the condition we live every day.
And then I did something I knew I shouldn’t do. But because I’m an idiot – or maybe I was hoping that humanity would surprise me – I did it anyway. I read the comments. I didn’t read all of them – there were thousands. There were no surprises and what I read told me this:
Diabetes remains a horribly misunderstood condition and with that lack of understanding comes stigma.
There were a lot of comments about how unnecessary a T1D Barbie is, how it was ‘pushing an agenda’ and that kids don’t need toys wearing their health condition. I call rubbish on that from the get go, because representation does matter. Of course it does. To see our health condition in the mainstream tells us that we matter and that our experiences (and devices!) aren’t something to hide. That’s why we get excited when we see characters with diabetes in film and TV (albeit at the ready to criticise when diabetes is reduced to a single scary moment, or someone charges at a person having a hypo with a full insulin injection!).
Then there were the comments about how Barbie was glorifying ‘diseases’ or encouraging an ‘unhealthy lifestyles’.
And bam! The stigma was front and centre, with the loud confidence that comes from people who genuinely have no ideas at all about any type of diabetes.
People not impacted directly by diabetes often don’t understand it. If I could wave a magic wand I would have those people simply say nothing. In an ideal world, they’d learn a little bit about diabetes, but honestly; I’ve come to realise that’s not going to happen, and I really don’t care. I know nothing about health conditions that don’t directly impact me. My brain is too full of other things to learn the nuances of every single autoimmune, metabolic or chronic health condition out there.
If it were up to me (and sadly it isn’t) I would have every person with zero level of knowledge or understanding of diabetes simply scroll on by and say nothing. But of course that didn’t happen. Instead, they treated us to stigma-laden tropes about ‘lifestyle diseases’, ‘personal responsibility’ and the always fun ‘she doesn’t look like someone with diabetes’.
And that was followed by people from within the diabetes community trying to justify why this Barbie matters and going to great pains to shout back about different types of diabetes.
I read a lot of those comments with the same dismay as the comments from people outside our community. Because many of them did nothing but add to diabetes-related stigma. In efforts to define T1D, T2D and the people living with it were thrown under the (Barbie dream) bus.
I don’t know what it’s going to take for people to understand that responding to stigma with stigma doesn’t help the T1D community. It harms us.
All diabetes stigma is bad for people with diabetes. When we reinforce damaging stereotypes about other types of diabetes we do ourselves no favours. That’s not what is going to change attitudes of the broader community – in fact it will simply make many double down on their stigma. Stigma harms all of us. It doesn’t care about type. If we want stigma to end, we can’t keep adding to it.
The launch of our own Barbie with diabetes is a moment of joy and offers an opportunity to build confidence in kids (and adults!) living with T1D. Just think of the way it can start conversations and reduce feelings of isolation. This moment deserves to be harnessed as a moment for more visibility, more understanding, and more celebration of what it means to live with T1D. Let’s go Barbie!
Disclosures
I work in the Global Responsibility team at Breakthrough T1D.
Diabetogenic 