Diabetogenic

Eight years of deliberate non-compliance

August 18, 2025 in Awareness, Community, Devices, Diabetes, DIYAPS, Lived experience, Loop, Real life, technology | Leave a comment

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.

Black and white photo of me pointing at the camera. I'm holding up my phone case which is highlighted in pink and has the words 'Deliberately non-compliant' printed in black. — Seemed like an appropriate day to reprise this oldie.

More on my experiences with Loop

My first Loop post

That time I scared the hell out of healthcare professionals

Early on learnings from Loop

Loop and sleep

What looping on holidays looks like

A year of Looping

A list of how Looped changed my diabetes life (and all of it is still relevant today!)

Postscript

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.

In a Barbie world there’s still stigma

July 10, 2025 in Uncategorized | 3 comments

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.

Photo of Barbie. She’s wearing a blue polka dot skirt and top and wearing a pink pump and pump CGM.

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.)

Photo of me in a striped dress, standing in the garden. I am wearing a CGM covered by a pink heart-shaped patch on my arm)

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.

Transcript: Making engagement the norm, rather than the exception

June 2, 2025 in Advocacy, Awareness, Communication, Community, Diabetes, DOC, Engagement, Health, Lived experience | 2 comments

This is a transcript of a talk I gave earlier this year to a European-based health consultancy and creative agency about my take on global diabetes community-based advocacy – the opportunities and challenges. The title I was given was ‘Making Engagement the norm rather than the exception’. AI did a remarkably decent job with this transcript, but I expect that there might be some clunky language in there that I missed when I read through it on a plane after being in transit for 27 hours straight. Or, I could simply have used clunky language. Either way, it’s my fault.

I often say that community is everything, but I want to begin by saying that it’s important to understand that there is no single, homogenous diabetes community. Everyone’s diabetes experiences are different. I truly believe that there are some issues that unite us all, but really, we are a very disparate group – something I have come to understand more and more the longer I have been involved in diabetes community advocacy. This poses possibly the largest challenge for everyone in this room wanting to work with “THE diabetes community” because if you’re looking for a group that agrees on everything and believes the same thing, I’m sorry to say that you’re going to be in for quite a ride!

But it is also the biggest opportunity – and the way to get an edge – because it gives anyone who works in the diabetes space – from healthcare professionals, researchers, industry, diabetes organisations, policy makers, the media – to roll up their sleeves and make a concerted effort to talk with a wide range of people with diabetes to understand our experiences and what we need. Look, I know that it would be easier for all of you if I said, ‘Speak with one person and then you’re good to go’, but that would be a lie. Sadly, a lot of people and organisations still believe this to be the case, and I have a great example to show you why that doesn’t work.

And that example? It’s me, hi, I’m the problem, it’s me.

A number of years ago, a researcher reached out to me with an invitation to be the ‘consumer representative’ on their project. After bristling at the term “consumer”, I asked what the project was about, and this is what they said, word for word because I wrote it down and have told this story a million times as a cautionary tale: ‘It’s a project on erectile dysfunction in men with type 2 diabetes, diagnosed over the age of 65.’

There was not a note of irony in this invitation. When I pointed out that I fit literally none of the categories in the study and then went on to point out that I am a woman; I have T1D; no erectile dysfunction; diagnosed at 24; was not within a decade of 65 years of age, the response was ‘Oh, but you have diabetes, so you’ll be great’.

Friends, I would not have been great.

For the purposes of this discussion, when I say diabetes community, I am referring to people with lived experience of diabetes. There is a lot of cross over in the diabetes advocacy space, and there are many examples I can point to that show how valuable advocacy efforts can be when people with diabetes are involved in efforts led by diabetes organisations or other stakeholders. In fact, at the end of last year, we saw a brilliant example of that with Breakthrough T1D in Australia receiving $50.1 million in funding from the Australian government for their Clinical Research Network. This is the power of an organisation meaningfully engaging with their community to tell the story of why their advocacy is important. I mean, what is more compelling than hearing from people with diabetes and their families about how research holds the key to a better diabetes future?

I’d encourage you to look at Breakthrough T1D Australia’s socials to see just how beautifully they centred people with lived experience to get their message across, and how it was people with diabetes who literally marched on parliament to tell the story. The coordination of the campaign may have come from a passionate advocacy and comms team in an organisation, but the words were all people with diabetes. (For transparency: I work for Breakthrough T1D, formerly JDRF, but not for the Australian affiliate. I am, however, extraordinarily proud of what Breakthrough T1D Australia has achieved and so, so impressed with the way their communications campaigns are never about the organisation or staff, but rather about the community.)

I believe that our community excels in telling the stories of our lives with diabetes, what we need to make our lives better, what works in our communities and how we can better work together. Some standout examples of this include the #dedoc° community, and, in particular, the #dedoc° voices scholarship program. This is the only truly global community where diabetes advocates are not only present but are leading conversations. #dedoc° has no agenda other than to provide a platform for people with diabetes which results in diverse stories and experiences being heard. And it also means that organisations want to work with #dedoc° because it’s an easy way to connect with community. (And another point of transparency: I’m the Head of Advocacy for #dedoc°.)

Organisations that thrive on working with community demonstrate their commitment to improving the lives of people with diabetes in ways that matter. If you don’t know about the Sonia Nabeta Foundation (SNF), you really should! The foundation has a network of ‘warrior coordinators’ who provide peer support and a whole lot more! I have now had the honour of chairing sessions at international conferences with four of these warrior coordinators and I can say without a doubt that Hamida, Moses, Nathan and Ramadhan’s stories resonated and stayed with the audience way beyond the allotted ten minutes of their talks. Addressing the challenge of a limited workforce and resources by engaging and employing people with diabetes to educate and support younger people with diabetes is so sensible and clever. And the results are remarkable.

I have seen similar examples in India. Visiting Dr Archana Sarda’s Udaan centre in Aurangabad and Dr Krishnan Swaminathan’s centre in Coimbatore completely changed my understanding of peer-led education. And groups like the Diabesties Foundation and Blue Circle Diabetes Foundation (also in India) are prime examples of the successes we can expect when people with diabetes take charge of programs and lead diabetes education.

Seeing these examples firsthand lit a fire under me to challenge what we have been told in high-resourced countries like Australia, and here across high-income countries in Europe. Why is it that we, as people with diabetes, are told to stay in our lane and not provide education? We may be considered ‘higher resourced’, but people fall through cracks because they are not getting what they need. Health systems remain challenged and overwhelmed.

The challenge we have in places like Australia is that PWD are very clearly told that we are not qualified to provide education. Rubbish! Our lived experience expertise puts us in the prime position to do more than just tell our own story, and I believe we need to boldly push back on beliefs that only health professionals are equipped to fill education and knowledge gaps. Because in addition to what we know, the expertise we hold and our ability to speak in the language that PWD understand, we also know about ‘going to the people’ and not expecting a one size fits all approach to work.

It would be naïve to think that community-led, and -driven programs and initiatives aren’t already happening. Community is integral in providing information that PWD are desperate for, even with caveats about consulting HCPs. There are 24/7 support lines available in the community, something that is simply not available in most healthcare settings. And anyway, who better than others with diabetes to give practical advice on real life with diabetes than those walking similar paths? In the moment and with direct experience.

The #WeAreNotWaiting community was established to not just offer advice but develop technologies to improve lives of people with diabetes and continues to do so today. A five minute lurk in any of the online community groups dedicated to open-source technologies is all it takes to see people with diabetes who had been at the end of their tether with conventional care now thriving thanks to community intervention.

And that is replicated in low carb groups where community provides advice and education on how to eat in a way that is often not recommended by HCPs. People share experiences how they are flourishing thanks to making informed decisions to eat this way, and air their frustrations about how they are often derided by HCPs about those decisions. The support that comes from these groups is often just as focussed on how to deal with the healthcare environment when going against the grain (unintended pun) as sharing ideas and advice on how the science behind how low carb diets work.

T1D groups talk about incorporating adjunct therapies into their diabetes management, moving from a glucose-centric approaches to looking at other meds and interventions that can support better outcomes. GLP1s may not be approved for use by people with T1D, but they are increasingly being used off label because of their CVD and kidney protective nature. These community discussions include suggestions on how to have conversations with HCPs to ask about how adjunct therapies might help, including pushing back if there is a blanket ‘no, it’s off label’ response. Before anyone thinks this isn’t a good thing, I remind you that we still need prescriptions from our HCP before we can start on any new drug. We should be listened to when we ask to have a discussion about new and different ways to manage our diabetes.

And there are also businesses led by community that have stepped into spaces that are traditionally organisation or HCP-led. A few years ago, Aussie woman Ashley Hanger started Stripped Supply to fill a massive gap when diabetes supplies could no longer be ordered online and shipped, instead necessitating a backstep where PWD had to go into pharmacies to pick up supplies. Ashley’s start up gave the people what we wanted and meant that, for a small subscription fee, supplies could be straight to our doors again. And it’s run by community – what’s better than that?

There is contention about people with diabetes working with industry, and that is a conversation for another time. But I will say that when we have people with diabetes involved in the development of the devices that we use and/or wear on our bodies every day, the end products are better. That’s just a fact. When you have people with diabetes employed by device manufacturers writing education and instruction manuals for those devices, they make sense because they are written from the perspective of someone who actually understands the practical application of using those devices. It’s a massive opportunity for industry to engage – and employ – people with diabetes. Way to get an edge!

What I would say to everyone here today is that if you are not directly working with people with lived experience of diabetes, you are missing out on the biggest piece of the diabetes stakeholder puzzle. But you have to do it meaningfully and perhaps the biggest challenge I face is dealing with the rampant tokenism that exists in the diabetes ecosystem. For my entire advocacy career I have been urging the implementation of meaningful engagement, and to be honest, a lot of the time I feel that I have failed in those attempts. Every time I see a crappy program or campaign come out of somewhere that claims to work with community, I realise that people with diabetes are being used in possibly the most nefarious way possible: to ‘lived experience wash’ the work of the organisation. I wrote a piece earlier this year about this and was completely and utterly unsurprised to receive comments justifying poor attempts of consultation.

But then, I see something like the video I am going to finish with from Breakthrough T1D in the UK, and I know that there is intent there to do the right thing and do it properly. To involve people with diabetes from the beginning, and centre them throughout the work. The result is a beautiful piece of storytelling that has been shared across the globe. I don’t know the metrics, and quite frankly, I don’t care. All I need to see is the response from the community to know and understand that this hits the spot. And you can too with your work if you engage properly. We’re here to help.

You can watch What a Cure Feels Like, the Breakthrough T1D UK video that concluded my talk here.

Disclosure

I was invited by a health consultancy firm to give a talk to fifty people working on public-facing health campaigns (NDA, can’t say anything more) and then run a workshop about working with lived experience representatives. I was paid for my time to present and prepare for the session, and reimbursed for ground transfers to and from the location of the meeting.

More about how to work effectively with people with lived experience of diabetes here.

Challenging ‘language of adherence’ at WHA78

May 27, 2025 in Advocacy, Awareness, Communication, Conferences, Engagement, Health, Language, Lived experience, Real life, Stigma | 4 comments

Last week I was in Geneva for the 78^th World Health Assembly (WHA78). It’s always interesting being at a health event that is not diabetes specific. It means that I get to learn from others working in the broader health space and see how common themes play out in different health conditions.

It’s also useful to see where there are synergies and opportunities to learn from the experiences of other health communities, and my particular focus is always on issues such as language and communications, lived experience and community-led advocacy.

What I was reminded of last week is that is that stigma is not siloed. It permeates across health conditions and is often fuelled by the same problematic assumptions and biases that I am very familiar with in the diabetes landscape.

I eagerly attended a breakfast session titled ‘Better adherence, better control, better health’ presented by the World Heart Federation and sponsored by Servier. I say eagerly, because I was keen to understand just how and why the term ‘adherence’ continues to be the dominant framing when talking about treatment uptake (and medication taking). And I wanted to understand just how this language was acceptable that this was being used so determinately in one health space when it is so unaccepted in others. This was a follow on from the event at the IDF Congress last month and built on the World Heart Foundation’s World Adherence Day.

Slide with the title 'Better adherence, Better Control, Better Health'.

While the diabetes #LanguageMatters movement is well established, it is by no means the only one pushing back on unhelpful terminology. There has been research into communication and language for a number of health conditions and published guidance statements for other conditions such as HIV, obesity, mental health, and reproductive health, all challenging language that places blame on individuals instead of acknowledging broader systemic barriers.

I want to say from the outset that I believe that the speakers on the panel genuinely care about improving outcomes for people. But words matter as does the meaning behind those words. And when those words are delivered through paternalistic language it sends very contradictory messages. The focus of the event was very much heart conditions, although there was a representative from the IDF on the panel (more about that later). But regardless the health condition, the messaging was stigmatising.

The barriers to people following treatment plans and taking medications as prescribed were clearly outlined by the speakers – and they are not insignificant. In fact, each speaker took time to highlight these barriers and emphasise how substantial they are. I’m wary to share any of the slides because honestly, the language is so problematic, but I am going to share this one because it shows that the speakers were very aware and transparent about the myriad reasons that someone may not be able to start, continue with or consistently follow a treatment plan.

You’ll see that all the usual suspects are there: unaffordable pricing, patchy supply chains, unpleasant side effects, lack of culturally relevant options, varying levels of health literacy and limited engagement from healthcare professionals because working under conditions don’t allow the time they need.

And yet, despite the acknowledgement there is still an air of finger pointing and blaming that accompanies the messaging. This makes absolutely no sense to me. How is it possible to consider personal responsibility as a key reason for lack of engagement with treatment when the reasons are often way beyond the control of the individual?

The question should not be: Why are people not taking their medications? Especially as in so many situations medications are too expensive, not available, too complicated to manage, require unreasonable or inflexible time to take the meds, or come with side effects that significant impact quality of life. Being told to ‘push through’ those side effects without support or alternatives isn’t a solution. It is dismissive and is not in any way person-centred care.

The questions that should be asked are: How do we make meds more affordable, easier to take, and accessible? What are the opportunities to co-design treatment and medication plans with the people who are going to be following them? How do we remove the systemic barriers that make following these plans out of reach?

One of the slides presented showed the percentage people with different chronic conditions not following treatment. Have a look:

My initial thought was not ‘Look at those naughty people not doing what they’re told’. It was this: if 90% of people with a specific condition are not following the prescribed treatment plan, I would suggest – in fact, I did suggest when I took the microphone – the problem is not with the people.

It is with the treatment. Of course it is with the treatment.

The problem with the language of adherence is that it frames outcomes through the lens of personal responsibility. It absolves policy makers of any duty to act and address the structural, economic and systemic barriers that prevent people from accessing and maintaining treatment. Why would they intervene and develop policy if the issue is seen as people being lazy or not committing to their health?

And it means the healthcare professionals are let off the hook. It assumes they are the holders of all knowledge, the giver of treatment and medications, and the person in front of them is there do what they are told.

There is no room in that model for questions, preferences, or complexity. There is no room for lived experience. There are no opportunities for co-design, meaningful engagement or developing plans that are likely to result in better outcomes.

When the room was opened up to questions, I raised these concerns, and the response from the emcee was somewhat dismissive. In fact, she tried to shut me down before I had a chance to make my (short) comment and ask a question. I’ve been in this game long enough to know when to push through, so I did. I also don’t take kindly to anyone shutting down someone with lived experience, especially in a session where our perspective was seriously lacking. Her response was to suggest that diabetes is different. I suggest (actually, I know) she is wrong.

And I will also add: while there was a person with lived experience on the panel, they were given two questions and had minimal space to contribute beyond that. I understand that there were delays that meant they arrived just in time for their session, but they were not included in the list of speakers on the flyer for the event while all the health professionals and those with organisation affiliation were. There comments were at the very end of the session, and I was reminded of this piece I wrote back in 2016 where health blogger and activist Britt Johnson was expected to feel grateful that the emcee, who had ignored her throughout a panel discussion, gave her the last five minutes to contribute.

Collectively this all points to a bigger issue, and we should name that for what it is: tokenism.

I didn’t point this out at the time, but here is a free tip for all health event organisers: getting someone to emcee who is a journalist or on-air reporter does not necessarily a good emcee make. Because when you have someone with a superficial understanding of the nuance and complexity involved in living with a chronic health condition, or understand the power dynamics and sensitivities required when facilitating a conversation about long-term health conditions, you wind up with a presenter who may be able to introduce speakers, but you miss out on meaningful and empathetic framing of the situation. There are people with lived experience who are excellent emcees and moderators, and bring that authenticity to the role. Use them. (Or get someone like Femi Oke who moderated the Helmsley + Access to Medicine Foundation session later in the day. She had obviously done her homework and was absolutely brilliant.)

I know that there has been a lot of attention to language in the diabetes space. But we are not alone. In fact, so much of my understanding has come from the work done by those in the HIV/AIDS community who led the way for language reform. There are also language movements in cancer care, obesity, mental health and more. And even if there are not official guidelines, it takes nothing to listen to community voices to understand how words and communication impact us.

So where to from here? In my comment to the panel, I urged the World Heart Foundation to reconsider the name of their campaign. Rather than framing their activities around adherence, I encouraged them to look for ways to support engagement and work with communities to find a balance in their communications. I asked that they continue to focus on naming the barriers that were outlined in the presentations, and shift from ‘How to we get people to follow?’ to ‘How do we work with people to understand what it is that they can and want to follow?’.

Finally, it was great to see International Diabetes Federation VP Jackie Malouf on the program on the panel. She was there to represent the IDF, but also brought loved experience as the mother of a child with diabetes. The IDF had endorsed World Adherence Day and perhaps had seen some of the public backlash about the campaign and the IDF’s support. Jackie eloquently made the point about how the use of the word was problematic and reinforced stigma and exclusion, and that there needs to be better engagement with the community before continuing with the initiative.

Stigma isn’t the issue here

May 9, 2025 in Awareness, Devices, Diabetes, HbA1c, Pumps, Real life, technology | 1 comment

Earlier this week, diaTribe shared this on their Instagram:

It did not sit well with me at all. And I don’t understand the reference to stigma.

A1C is flawed. People with diabetes have been saying this for decades. To have our overall diabetes management measured by an average that gives no nuance to other factors is not a good way to assess health or guide treatment.

CGM changed all that, with visibility into just what is going on with glucose levels at all times. I finally understood why I was so tired some mornings, despite eight solid hours of sleep with in-range numbers at bedtime and at waking. I saw the rollercoaster nights, or the hours at time I was low. It became very clear that my nighttime glucose adventures were exhausting me.

As more people had access to CGM, TIR was heralded as the new gold measuring standard. And it was everywhere. I wrote and spoke about it a lot because the real-time data gave me a clearer understanding of my diabetes. But with that excitement came a gnawing discomfort: were we just swapping out one metric for another?

After a couple of years of TIR, and with the advent of newer, smarter AID systems there was a new kid on the block: Time in Tight Range (TITR). Target upper and lower limits were tightened and there were expectations of remaining within those ranges.

I nodded along because I was, for the most part, comfortably sitting within those number thanks to Loop. And yet, my discomfort grew. More pressure, more expectations on people with diabetes based solely on numbers, and a continued widening of the gap between people with access to tech and those without.

At ATTD a couple of months ago, there was the announcement of a new metric: Time in Normo-Glycaemia – TING! (There is no exclamation mark after the acronym, but it reminds me of the celebratory sound my kitchen timer makes when a cake is done baking, and that deserves festive punctuation.) And horrifyingly, to this #LanguageMatters boffin, the new acronym includes the word ‘normo’. Language position statements have always, always advised against using the word normal/normo. The word shapes attitudes that contribute to stigma. In one study, 85% of PWD surveyed found the word unacceptable.

These measures still focus on one thing: our glucose numbers. There are goals for the percentage of time each day we should be aiming to be in (ever-tightening) range. So, effectively, the HbA1c percentage has been replaced with time in range percentage. It’s still focusing on nothing more than numbers. It still sets us up for a pass/fail framework.

A1C, in itself, is not stigmatising. It’s a number. The language used when discussing A1C can be stigmatising. Attributing success in diabetes to an A1C number can be stigmatising. Being told we’re failing for not reaching an A1C of a certain number is stigmatising. But all of those things are true of TIR.

Before anyone comes at me and tells me that PWD should be able to have numbers within a tight range, of course that’s true. But isn’t that already the goal of our diabetes management? Isn’t that the point with all the glucose measuring, insulin dosing, and considering the bazillion other things we do to manage diabetes? I don’t know anyone with diabetes who does the work with a goal of glucose number of 17.0mmol/l; an HbA1c of 14%; a TIR/TITR/TING of 11%.

But replacing one measure for another still traps us in a numbers-only mindset. How is ‘What’s your TIR?’ really any different to ‘What’s your A1C?’ Does it free us from being metrics-focused? (Some might argue that it ties us to numbers even more with daily updates about how we’re tracking.) Does it address stigma?

I’m not sure it does. I’m not convinced that there is any relevance at all to stigma in this conversation. And I’m a little annoyed at the conflation. Diabetes-related stigma is very topical now, thanks to important efforts by PWD, community groups, researchers and clinicians in the diabetes space. If I was being cynical, I’d suggest that this is an opportunistic attempt to jump on the buzz movement of the moment without meaningfully engaging with what stigma really is or how any type of metric can contribute to it, depending on how it’s framed and used.

Postscript – but possibly the most important part…

And finally, but perhaps most importantly: the very idea that we are suggesting this is the gold standard when it is inaccessible to the vast majority of people with diabetes is just so out of touch. According to the diaTribe article that accompanied the Instagram post I shared earlier, worldwide 9 million people are currently using CGM as part of their diabetes management. The IDF’s latest Atlas data, (launched last month) reports that there are about 589 million adults (20-79 years) with diabetes across the world. That doesn’t include children and young people. (1.8 million young people are estimated to be living with T1D.)

Isn’t this one way stigma takes a hold? When we’re talking about targets that are only available to the small fraction of the diabetes community who can access the tools to achieve them. Setting standards around tech that most can’t obtain doesn’t just ignore reality—it reinforces the stigma of not measuring up.

A stunning retelling of our story of hope

May 2, 2025 in Awareness, Communication, Diabetes, Research | Leave a comment

It’s not an exaggeration when I say that I give thanks to Frederick Banting every single day. I have a photo of him in my office next to an artwork of the word HOPE. And anytime I am sitting at my desk working or sitting in my office reading and find myself looking at the photo, I say these words: ‘Thank you for my life’.

The story of the discovery of insulin has been told many times. There are some excellently researched and detailed accounts of what it took to get to the ‘Eureka!’ moment, as well as documentaries and a couple of feature length movies. But despite having a dozen or so books on my shelf that tell the story, I was so excited to order this version:

Photo of the children's book 'It Belongs to the World'.

‘It Belongs to the World’ is a gorgeous children’s book by Lisa Katzenberger, and illustrated by the supremely talented Janina Gaudin, (better known online as Miss Diabetes), is a truly beautiful retelling of the story.

While it would make sense to say that this book would make a great gift for a child with diabetes, or parent living with diabetes to read to their kids, really, it’s is a book for everyone. Stories like this should be told over and over, and not just to those of us for whom it is personally relevant. Everyone should learn about the brilliance of scientific discovery. It’s a reminder of the importance of research, and how research saves lives each and every day. It serves to encourage us to get behind research efforts, as a participant or donor if possible. And it gives hope for what still lies ahead.

Oh, and it’s always good to support creators in our community. What a brilliant awareness raising effort from Janina and Lisa. Go get your copy now!

Disclosures

None! I paid for my own copy of this book through my local bookstore. They had to get it in, so you may need to order it. (Or it’s available to order through Amazon.)

Why language and stigma clangers persist

April 24, 2025 in Advocacy, Awareness, Communication, Community, Conferences, Diabetes, Engagement, Language, Lived experience, Stigma | 1 comment

One of the things of which I am most proud is seeing how the language matters movement has really made people stop and think about how we communicate about diabetes. Of course, there’s still a long way to go, but it is very clear that there have been great strides made to improve the framing of diabetes.

One area where there has been a noticeable difference is at diabetes conferences. I’m not for a moment suggesting that there is never negative language used at conferences and meetings, but the clangers stand out now and are likely to be highlighted by someone (i.e. #dedoc° voices) in the audience.

Earlier this month, the 75^th IDF World Congress was held in Bangkok. Sadly, there was no livestream of the Congress, but it’s a funny thing when you have a lot of friends and colleagues (i.e. #dedoc° voices) in attendance. It meant that I had my own livestream. Sadly, the majority of what I was being sent were the language clangers.

But let’s step back a week or so to before the Congress even started. I was feeling horrendous and my brain was in a foggy, virus haze, yet I still managed to be indignant and vent at the horrendously titled ‘World Adherence Day’ which was being ‘celebrated’ on 27 March. Here is my post from LinkedIn, which has been viewed close to 12,000 times:

LinkedIn post that reads To anyone familiar with me and my work in diabetes and language, it will come as no surprise to learn that I’m disappointed to see today marked as ‘World Adherence Day’. According to campaign materials, the day aims to highlight the importance of following prescribed healthcare plans to manage chronic conditions like diabetes.

Here’s the issue with the word adherence (and its close cousin, compliance): both imply that people with diabetes—and other chronic conditions—are expected to follow healthcare plans handed down to them, often with little or no shared decision-making. Too often, PWD are told what to do without consideration of whether those instructions are realistic, sustainable, or even appropriate for their personal circumstances.

This language of ‘adherence’ reinforces a paternalistic model of care, where healthcare professionals are positioned as the sole experts and people living with diabetes are expected to adhere (or comply) without question. It overlooks the fact that managing diabetes is a 24/7 job, filled with constant decision-making, emotional labour, and real-life trade-offs. Framing someone’s experience through the lens of adherence places blame when things don’t go to plan, instead of recognising the complexity of living with diabetes.

This campaign has missed the opportunity to spotlight what truly supports better outcomes: co-designed healthcare plans built through respectful, collaborative partnerships between people with diabetes and their healthcare team.

What I didn’t say in my post was that the IDF had eagerly endorsed the day with a media release and social media posts. My LinkedIn post took all my energy for that day, and I didn’t get a chance to follow up with the IDF. Plus, I assumed their attention would have been focused very much on the upcoming Congress.

Also, I hoped that it was a one-off misstep. I mean, surely the organisation had learnt its lesson after the Congress in South Korea when I boldly challenged incoming-president Andrew Boulton for his suggestion that people with diabetes need some ‘fear arousal’ to understand how serious diabetes is. You can see the video of my response to that at the end of this post and read the article I co-authored (Boulton was another co-author) about language here.

Alas, I was wrong. Just days before the Congress started, I saw flyers for this session shared online:

I was horrified and commented on a couple of the posts I saw. I was surprised to see some responses from advocates which amounted to ‘We can deal with it when we get there.’ Here are reasons that isn’t good enough. Firstly – not everyone is there, so all they see is the promotional of an event, comfortably using stigmatising language. It suggests that this language and the meaning behind it is okay. The discussion shouldn’t be happening after the fact. In fact, the question we should be asking is: HOW did this even happen? Where were the people with lived experience on the organising committee of the Congress speaking up about this? Did they get to see it before it was publicised? And how did the IDF miss it? This is, after all, the organisation that launched a ‘Language Philosophy’ document in 2014 (which sadly seems to be unavailable online today). It’s also the organisation that has invited me to give a number of talks about the importance of using appropriate and effective communication to IDF staff, attendees of the Young Leaders Program and as an invited speaker at a number of Congresses.

A major sponsor at the IDF Congress seemed to be very excited about the word adherence. In fact, it appeared over and over in their materials at the Congress. Here is just a couple of their questionable messaging sent to me by people (i.e. #dedoc° voices) attending the Congress:

I will point out that the IDF obviously understands the impact of stigma on people with diabetes and the harm it causes. There were sessions at the Congress dedicated to diabetes-related stigma and how to address it. In fact, I had been invited to give one of those talks. But what is disappointing is that despite this, terminology that contributes to stigma is being used without question.

I wasn’t at the Congress but from what I saw there was indeed a vibrant lived experience cohort there. #dedoc° had a scholarship program, and, as usual, there was a Living with Diabetes stream. However, I will point out that the LWD stream was not chaired by a grassroots advocate as has been the case for all previous LWD streams. It was chaired by a doctor with diabetes and while I am in no way trying to delegitimise his lived experience, I am unapologetically saying that this is a backwards step by the IDF. When there is an opportunity for a person with diabetes who is not also a health professional is given to a health professional or a researcher, that’s a missed opportunity for a person with diabetes. There were seven streams at the IDF Congress. All except for one are 100% chaired by clinicians and researchers. Only the LWD stream is open to PWD. I know that when I chaired the stream, the four members of the committee were diligent about looking through the entire and identifying any sessions that could be considered problematic for people with diabetes. It appears that didn’t happen this time.

All of this points to a persistent disconnect. It is undeniable that the language matters movement is growing, but it is still not embedded across the board—even within organisations that should know better. If we are serious about addressing stigma and centring lived experience in diabetes care, then language can’t be an afterthought or a debate to have after the posters are printed and the sessions are underway. It must be part of the planning and the review process. The easiest way to connect the dots is to ensure the lived experience community is not only present, but also listened to, respected, and in positions to influence and lead. We are long past the point where being in the room or offered a solitary seat is enough – the room is ours; we are the table.

Postscript:

I have written extensively on why language – and in particular the word ‘adherence’ – is problematic. It’s old news to me and to many others as well. This piece isn’t about that. But if you want to know why it’s problematic, here’s an old post you can read.

Disclosures:

I was an invited to give a talk about diabetes-related stigma at the IDF Congress in Bangkok, but disappointingly, had to cancel my attendance due to illness. The invitation included flights and accommodation as well as Congress registration. I was also on the program for two other sessions and was due to present to the YLD Program.

Other IDF disclosures: I have been faculty for the YLD Program for the last 10 years; I chaired the LWD Stream at the 2019 Congress and was deputy chair of the 2017 Congress.

You (I) should probably rest

April 8, 2025 in Diabetes, Health, Hypo, Lows, Real life, Travel, Wellbeing | 5 comments

I’ve been unwell.

And so, I’ve had time to think. Mind you, I’ve found it difficult to form thoughts properly, thanks to the brain fog that is impacting my attention span and ability to think things through to a conclus…oh look! The leaves on the trees in the garden are changing. I should buy the last plums when I go to the fruit and veg shop, and bake a plum cake. That would be delici… Are mandarins in season yet? Ooh, a puppy!

Anyway, back to trying to focus on what I’ve been randomly and messily thinking about.

On my last day at ATTD in Amsterdam, I wound up with a very weird pain flare that meant I could barely move. I put two and two together, came up with the wrong answer and decided it was thanks to arthritis and spent the day before my flight desperately trying to sleep it off so I would be okay to navigate Schiphol Airport and get myself home. I did make it home, but not without wheelchair assistance at each airport, and in excruciating pain for the entire long trip home.

Turns out, it wasn’t arthritis. It also wasn’t diabetes, but that didn’t stop me from trying to connect non-existent dots.

The day before the paralysing pain flare, I woke at 3am with my Dex alarm wailing. I was low. Very low. For five hours. You know, one of those lows that just won’t quit. One of those lows that simply won’t respond to massive quantities of glucose. I ended up throwing up after force feeding myself jellybeans and guzzling juice from the minibar, which was all just lovely. (And yes – I realised I had some inhalable glucagon with me AFTER the fact … but in my low fog, forgot as I was just trying to stay alive with sugar.)

Of course, I was exhausted when I finally came back in range and felt like I’d been hit by a truck. But sure enough, I got up and had a frantic day at the conference centre, in meetings, giving talks and trying to appear functional while feeling absolutely wrecked.

The next day, when I woke up unable to move because I was in pain, I thought that perhaps it was a result of overdoing things the day before, when I should have perhaps taken the morning off to recover from the hypo and the exhaustion that came with it. But of course I didn’t. Because when have I ever taken time off for diabetes? One time I had an evening black out hypo in a park requiring paramedic attention and I was in at work at my desk by 8.30am the next day. Because why wouldn’t I be? My weird and illogical attitude is that if I was to take time off to recover every time diabetes doesn’t play nicely, I’d be taking hours off each week. No one has time for that. At least, I certainly don’t.

And how very messed up that thinking is. I realise that. And I know what I say to friends with diabetes who tell me about their particularly crappy hypos, or when diabetes is kicking their arse/ass: ‘Take the time and let your body rest,’ I’ll say. ‘You’ve just been dealt a pretty shitty blow to your body and mind. Don’t overdo it,’ I’ll remind them.

And what do they do? They don’t rest. They don’t listen to their body. They overdo it. It’s what we do.

It’s messed up and we keep doing it, even though we know better. Of course we know better: because we give good advice to others. But we then do that ridiculous thing where we think resilience is strength, where actually, resilience would be listening to what our bodies need and then doing it. We ignore symptoms and give ourselves imaginary gold stars for ‘pushing through’.

It took some weird virus that literally hampered my ability to walk for me to take time off work. Sleeping 20 hours a day was all I could manage. But you know what? I should have slept 20 hours the day after the five-hour low to recover too, but of course I didn’t.

Who am I trying to impress by soldiering on as though there’s nothing wrong? What am I trying to prove? Do I think we get extra points in some bizarre Hunger Games-like challenge? Is it that I worry what others will think of me if I say, ‘I need to stop for a bit’? Am I afraid of seeming weak? Lazy? Or am I – twenty-seven years later – trying to live up to the ‘diabetes doesn’t change anything’ line I was fed the day I was diagnosed, even though it changes everything?

I’ve been back home now for two weeks now and really just getting back to regular programming now. On Sunday I was able to stand up for long enough to bake a cake. That was a win. I also was able to walk to our local café – a five-minute walk away – but needed a lift home. Slowly, but definitely better.

I’m not pushing myself – partly because I can’t, but also because I refuse to and that is something that is very weird for me. I’m home this week instead of flying to Bangkok to speak at the IDF Congress – the first time I have ever cancelled a work trip. Usually I push through. Usually I suck it up and pretend all is fine. Because I drank the ‘diabetes-won’t-stop-me’ Kool Aid when instead, I should have recognised that there is no shame in stopping to rest. I need to be better and do better about this. And listen to the advice I would give everyone else. Permission to take time out for diabetes.

This post is dedicated to my darling friend and #dedoc° colleague Jean who also doesn’t know when to stop. Let this be a reminder to put down the Kool Aid!

Instagram story screenshot of me just before the #dedoc° symposium. I'm smiling and looking away from the camera. — Feeling good! Just before the #dedoc° symposium – a couple of days before feeling poorly.

So, what’s new with you?

February 17, 2025 in Health, Real life | 5 comments

Is it too late to say Happy New Year? Probably, but does anyone actually believe that social norms still exist in the world the way it is these days?

And so – happy New Year to you. I’ve been absent. Not that it’s important to acknowledge this. But I have been because headspace these days is non-existent because of (gesturing wildly) the world.

But anyway, here’s an update no one asked for, (actually not true – thanks to all the people who have reached out and asked):

I made a resolution. Happy to hear that many of you have made a similar one. Smart, smart people!

I also didn’t do things: I didn’t start some bullshit diet, because diet culture sucks and is harmful. I didn’t tell anyone what they should be eating, because no one needs that. I didn’t go away for the holidays, because I was so travel burned out that the last thing I wanted to do was jump on an aeroplane.

Instead, I read some great books (Amor Towles, Jhumpa Lahiri, Paul Auster’s final words) and read some not-so-great books (Stanley Tucci – I adore you, but your latest book could have stayed as a personal diary and not been published, mate). Walked lots. Sat outside in cafes drinking barrel-loads of iced coffee. Saw some movies and binge-watched some TV shows (do we need to talk about Apple Cider Vinegar? Yes, yes we do.)

And I spent a lot of time complaining about my hands. My sore, achy, stiff, stupid hands.

I now have arthritis. Is it because I am old? Or maybe just because I collect health conditions? Is it psoriatic arthritis or is it osteoarthritis? (Probably both.) Does it have anything to do with perimenopause? Is Mercury in retrograde? Did I walk under a ladder? Whatever the reason, it sucks. And it hurts.

This diagnosis actually came last year, so I don’t really get to blame 2025 for it. It started in September. One day, I didn’t have pain in my fingers. And then I did. I spent the whole time I was in NY for the UNGA last year noticing that a lot of the time I moved my index fingers I felt a little twinge. Then the twinge moved to other fingers. By the time I was on the plane home there was pain any time I moved my hands. And even when I didn’t. So pretty much all the time.

These are the hands that type words, make divine cakes and pastries, roll out pasta dough, turn the pages of books, hold onto my loved ones, grasp microphones on conference stages and in media opportunities, press down on cutters as I shape biscuit dough, hold the cups containing the coffee that sees me through the day, doom-scroll through the latest update in the cesspit of the world, tickle the tummies of our dogs, pat the top of the head of our cat, point out the specific pasticcino at the pasticceria I want to eat, stir pots of delicious soups and sugo on the stovetop, tap out snappy responses to misogynists on the internet, are waved around as I talk… And all of these things cause pain. All of them.

Here’s something about me: I don’t deal well with pain. I had a little cry in my GP’s office at the end of last year. I cried because there isn’t something I can do to just fix this. Here’s the list of things I read that I should do to help improve arthritis pain: be a ‘healthy’ weight (because diet culture and we’re led to (falsely) believe that people who live in smaller bodies are always perfectly well. Bullshit), stop smoking, limit alcohol, eat healthily, walk and be active. I can’t start to do those things because I already tick each and every box. So what I am supposed to do? Sure, my activity involves little more than walking, but I do get in close to if not 10,000 steps a day, so I’m not completely sedentary.

I’m whingy about it all because the pain is always there, and I don’t get a break. And diabetes is always there, and I don’t get a break. And anxiety is always there, and I don’t get a break. Honestly, I’d take the pain not being there and keep the others any day.

While I wait to see a rheumatologist, I am doing some things that may be easing the pain a little. I say ‘may’ because I don’t really know, and I don’t want to stop them in case it makes it worse. And I spend a lot of time annoying people by telling them my hands hurt. (Don’t believe me – see the 800 words in this blog post – thanks for reading!)

I know the world doesn’t work this way, but sometimes I think it would be nice if those of us already dealing with a shedload of health conditions could sit things out for a bit. By ‘things’ I mean new diagnoses. That would be fair, wouldn’t it? I don’t really want to add another health professional to my contacts list and dedicate more time in my calendar for regular check-ups. And I don’t want to have to learn the lingo of a new health condition, while training a new HCP to understand the way I like to be treated. I don’t really want to have to give more money to the pharmacist for more drugs. I don’t really want to use more emotional bandwidth worrying and thinking about what this means long term. I don’t want to think about being in pain all the time. I also don’t want to wind up not being able to wear the beautiful rings I own, and feel free to call me shallow while I completely ignore you.

And so, that’s where I am right here and now. A mostly gentle start to the year. And sore hands. Very, very sore hands.

Sore hands making gnocchi

Another year of empty vases

February 14, 2025 in #SpareARose | 1 comment

Today, just as always on 14 February, my favourite vases are empty. It’s not that we forgot Valentine’s Day. It’s because in our house, it’s Spare a Rose Day.

The annual Spare a Rose, Save a Life campaign is about turning love (or lust, or ‘I kinda like you’) in action. Instead of giving flowers, we donate to the campaign that was founded in diabetes community advocacy to provide support to people diagnosed with diabetes in under-resourced settings. The equation has remained the same since the campaign started over ten years ago: for each rose we forgo, insulin is supplied for a month to a person with diabetes. $5 for one month. $60 for a whole year.

All donations are made directly to Insulin for Life , an organisation doing vital, lifesaving work across the globe. Every cent counts and goes towards saving the lives of people with diabetes.

It’s a really easy choice for us. Because no one chooses to live with diabetes. And no one chooses to live in a place where a diabetes diagnosis is a death sentence.

Since 2013, our remarkable diabetes community has measured love not by the roses we send, but rather by the ones we don’t. A single rose might fade in a few days, but the impact of sparing one, and making a small donation can be life saving.

If you can, please Spare a Rose today. Just $5 can save a life.