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I have a diabetes friend called Andrea. She lives in France and I’ve known her for close to 15 years now. She once told me a hack that she thought Podders should know. I didn’t heed her advice and should have. So, in the spirit of #PayItForward (RIP, Bastian), I’m sharing it here.
Every pod user will be familiar with the pod scream of death. Maybe you have never experienced it yourself, but I expect you will have been told of all the impossibly inappropriate places a pod decides to play the music of its people.
Hopefully, it will be a rare occurrence, but there’s no mistaking the high-pitched scream that emits from a device that usually makes no other noise than a gentle, reassuring clicking sound when delivering insulin.
For me, it inevitably happens when the eight-hour grace period has lapsed and I’ve ignored all the countdown warnings. Be better than me. Don’t do that.
Silencing the piercing alarm is usually easily remedied. A sharp needle shoved into a small hole on the back of the pod usually does the trick. There’s something magical about the peace that prevails after the screaming stops.
The other day, I was working in my office at home, and was startled by the high-frequency shriek. I looked up from my computer screen and started counting hours backwards. Why was the bloody thing screaming at me? I’d changed it only the evening before. I glanced at my phone which showed a beautiful green loop, and tilted my ear towards the pod on my right arm that seemed happily doing its pod thing. It certainly wasn’t shouting at me.
I stood up, looking around for the source of the noise. The banshee wail was coming from the cardboard box on a shelf in my office – the box where my pods rest before being sent off for recycling. (Podders – you do all know about the recycling programme, right?)
I pulled the box down and looked inside. There were about 25 spent pods in there, and one of them was not happy. I worked my way through them, until I found the offending noise maker, and shoved a needle into its back.
I then looked suspiciously at the others in the box and realised that any of them could start screeching at any moment. What if they were influenced by the non-compliant noisy one? What if they decided to do the same thing at 3am? I dumped each of the pods onto my desk and stabbed the lot of them .
And while doing so, I remembered my clever friend Andrea telling me that she always disables the old pod when she’s doing a change. For this exact reason. ‘Smart,’ I thought. ‘I’m going to do that, too.’
Reader, I did not do that, too. I waited until an old pod threw a tantrum because it didn’t like being in the box with other pods and decided to share its big feelings.
In the spirit of sharing diabetes hacks, I am passing on Andrea’s smart advice: disable your pods before you pop them in the recycling box. Do it once you’ve filled up your next pod and you have a sharp needle right there to do it. Make it part of your pod changing process. Don’t leave it until you are frantically trying to silence the little sucker. Future you will thank you. That’s what I’m doing now.
And this is just another reminder of how the most important things we learn are from our friends with diabetes who know all the tips and tricks to make diabetes that tiny bit easier to manage.
For the last 25 and a half years, I’ve used an insulin pump to keep me alive. I’ve been using CGM almost full time since 2013, and sporadically before that.
Today, newspapers across Australia have published a fear-mongering report dressed up as serious investigative journalism about the safety of diabetes technologies and devices.
This is why we can’t have nice things.
Let me start by clarifying a couple of things. Firstly, the stories quoted from a few people with diabetes who have had genuinely frightening experiences with their technology should not be minimised. I understand how terrifying they may have felt when the devices they relied on didn’t behave as expected. And now they have made them question the safety of their devices.
And, secondly, I am fully aware of the shortcomings of diabetes tech. Of course I am. I’d be lying if I said I’d never had something go wrong in the well over 9,000 days I’ve had a diabetes device attached to my body.
But when I stop and weigh up the risks and compare them with the benefits, there’s no question that diabetes technology has not only been beneficial to me, it means that I am healthier than I thought possible, sleep better and spend far less time consumed by the endless decisions diabetes demands.
Decades of evidence show that use of these technologies improves diabetes outcomes, decreases glucose variability and lowers the risk of diabetes-related complications. My n=1 experience (which, for the record should be irrelevant in anything other than me talking about my own experience) is that these devices mean that I am able to show up as the best version of myself, despite the incredible challenges T1D throws my way.
The reports today highlight an increase in the reporting of adverse events. An ‘adverse event’ can be anything from a pump failure, a cannula blockage, a sensor failing or reading incorrectly or an alarm not sounding as expected.
It can also be device tape not adhering properly. Or skin irritations.
It shouldn’t take a genius to understand that the reason for the increase in adverse event reporting is the significant increase in people using these devices, thanks to NDSS subsidies.
Should we have the right to feel confident that government agencies are evaluating and monitoring the safety of these devices and acting when necessary? Absolutely.
There are thousands of hours of research demonstrating the safety of these devices, and that, overall, the benefits of diabetes technology far outweigh the risks.
I’d like to ask the journalists who have published this beat up and cherry picked lived experience stories: what’s the alternative? Should we go back to injecting insulin and blood glucose monitoring? I mean, there can be errors with blood glucose monitors (or I could not have completely wiped Nutella from my fingers before checking my glucose), so should we go back to peeing on a stick? And should we stop using automated insulin delivery and go back to doing all the calculations in our diabetes-exhausted and burnt out brains? DIY diabetes – and a reminder that all diabetes is DIY – was always far more dangerous to me than any automation from devices.
And I’d ask them where are the stories from the thousands and thousands of Australians who use these devices every day and are not experiencing serious problems?
I’d also like to remind them that people with T1D don’t get the option of opting out of risk. The comparison isn’t between diabetes technology and zero risk. The question is which approach gives us the best chance of staying alive and living well.
The potential damage to advocacy efforts for expanding access to insulin pumps for people with T1D and access to CGM for people with other types of diabetes has been done with this ‘investigation’ – a term I use very loosely here. Or for the introduction of the next generation of diabetes tech. Sowing the seeds of doubt without countering with balance, is irresponsible journalism. And in this case, it’s people with diabetes who stand to lose out.
What you can do today:
Write to Sixty Minutes, The Age and The Sydney Morning Herald with your concerns about their biased reporting.
If what you’ve read has made you second guess decisions about your own tech use, take a deep breath and double check your contingency plans and the limitations of tech we are all told about, and how to minimise them as best we can. If you’re really worried, contact your HCP.
Disclosures, because, jeez, that’s important today (and perhaps could have been clearer from some of the experts in the reports…)
I have used Omnipod, Deltec (RIP Cozmo) and a number of Medtronic pumps since 2001, and Dexcom sensors since 2013 (as well as some Medtronic sensors prior to that, and the occasional Abbott Libre sensor). I currently use Loop (Omnipod DASH and Dexcom G6). I pay for all diabetes devices consumables via the NDSS, and private health insurance covers the cost of insulin pumps.
As part of my health consultancy business, I have consulted for Medtronic, Abbott, Dexcom and Insulet (in Australia and globally). These consultancies have been focused on community engagement, language and communications.
A post really only relevant to Australians with T1D, but the broader discussion about needing to include PWD in policy decisions and implementation processes is relevant to the entire diabetes community.
For many years, I worked for Australian diabetes organisations and one of the roles I had was to be involved in policy implantation plans. These discussions were typically highly detailed with many moving parts, and many stakeholders to consider.
One of the reasons I was included in these discussions was because it meant that there was a voice of a person with lived experience and expertise in the room who could point out the realities of proposed implementation plans or policy change. This was important, because often the practicality of what a change meant got lost as rules were drawn up.
When there isn’t a person with diabetes in the room, things happen that made our lives more difficult. Case in point – a few years ago when new AustRoads Assessing Fitness to Drive Guidelines introduced a requirement that an HbA1c below 9% be used as a measure of “satisfactory control” for licensing purposes. The result was confusion, anxiety and, in some cases, people with diabetes having their licences affected because of an arbitrary HbA1c threshold that seemed disconnected from actual driving risk and the realities of living with diabetes.
Today I received notification of an upcoming change to the NDSS and it seems there has been little consideration of how the implementation of that change will affect people T1D.
What’s the change?
Dexcom G6 transmitters and sensors will no longer be available on the NDSS from 1 October this year. Of course, this isn’t a surprise. We have seen the transition from G6 to G7 in other countries and it was just a matter of time before it happened here in Australia. While it only affects us now, Australians have known about this because we’ve seen our diabetes friends elsewhere around the world deal with it. This means we have had time to consider our options, stockpile G6 sensors and transmitters if we don’t quite feel like it’s time to change yet and chat with others about what their plans are.
In the email is this:
As you currently access Dexcom G6 through the NDSS, please see your diabetes health professional before 1 October 2026 to change to a new continuous glucose monitoring (CGM) device. They will discuss the most suitable device for your needs and make the change through the NDSS. We recommend booking an appointment soon, so your health professional has time to make the change before 1 October 2026.
My concern and outright frustration is about why the onus of this change is falling to people with T1D. Why are our NDSS preferences not being automatically changed to the new Dexcom product? Why are we required to see a health professional to do this?
If I were in the room when discussions about the implementation change, I would have pointed out the following: Many people with T1D have been using CGM products for years. It is possible to access different devices to those on our NDSS preference without a HCP.
And I would have asked:
Why isn’t there an automatic preference change to the new Dexcom product?
Why are people with T1D not able to make this decision themselves without mandated clinical oversight?
And if we must see a HCP to change brands, why isn’t that a decision we can make ourselves?
Some pumps only integrate with Dexcom CGM products, so what is there to discuss in that appointment?
Has anyone considered the expense that will be incurred by PWD needing an appointment, the lengthy wait time to see their HCP? I expect many HCPs will be happy to take care of simply making the change without an appointment, but if they insist, PWD will need to take time away from work or school.
Why is the language in this letter unnecessarily paternalistic? The idea that PWD don’t know what is most suitable for our own needs completely ignores that we manage T1D largely on our own (we get, on average, less than 4 hours a year with our HCP) and make hundreds of decisions every single day.
I completely understand that all people are different, and some PWD would prefer to see their HCP before changing tech devices, but that should be the choice of the person with T1D. Not the decision of an administrative process.
Diabetes admin will forever take up far too much of our lives. It frustrates me when unnecessary tasks are added to the never-ending to-do list because no one has asked a simple, but critically important, question: What will this mean for people living with diabetes?
Details about this change can be found here.
Here I am taking mine to the Taj Mahal.
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!’.
While I may not be good at diabetes, it turns out that I’ve cultivated a safety net to help me through those times. Because the community is there when we fall. It was there when Jo was #PumplessInVienna, when a friend forgot to pack pump cartridges, and the time I had a run of faulty Dexcom sensors while in New York.
‘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!
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.
More on my experiences with Loop
That time I scared the hell out of healthcare professionals
What looping on holidays looks like
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.
Last week I was in Geneva for the 78th 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.
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.
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.
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!
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.
When the clock ticked over into 2025, I had no intention of even considering coming up with New Year’s resolutions that would shape my new year. But with all that is going on in the world, I’ve given myself permission to reconsider and do all I can to stick to it. And I’m encouraging everyone I know to make the same resolution.
And that resolution is to do a health literacy check-up and to actively pushback against misinformation. There has never been a time when being health literate is more important. I thought that during the COVID years as we received a daily onslaught of misinformation about vaccines, bogus treatments (bleach, anyone?), outright lies (“it’s just a cold”) and conspiracy theories (“BigVax is behind it all”). But how naïve I was. Those days seems like just a warm-up for what is happening today.
I’m in Australia, but I don’t for one moment think we are immune to the madness sweeping the world. But if you are shaking your head and laughing a little when RFK Jr spews his anti-vax, anti-fluoride, anti-science agenda, or Dr Oz uses his latest pseudoscience claim as the foundation for whatever supplement he is selling, you’re not grasping the seriousness of what is going on. Before we Aussies get too smug, we should remember our own backyard isn’t devoid of charlatans, and it’s only a matter of time before someone like Pete Evans is taken seriously in public health discussions. Think I’m over-reacting? He already made a run for the senate. How long before a conservative party sweeps him into their fold?
I think it’s safe to say that we have moved beyond this sort of misinformation being a fringe issue amongst ‘crunchy’ parents, trad wives and ‘wellness’ influencers. And Gwyneth Paltrow.
Health misinformation is deliberate and it’s mainstream, and protecting yourself against it isn’t optional – it’s essential.
Up until now there have been guardrails in place to protect public health. Boards and regulatory agencies have existed to ensure medical safety and provide us with confidence that there are processes in place to determine the safety of drugs, devices, healthcare programs. Guidelines are based on robust and rigorous research and are developed using evidence and expert consensus. (Side bar: Have people with lived experience been involved in these practises? Absolutely not enough. Could this be better? Absolutely yes.)
Critical thinkers understand that science is not static. We understand that science changes as evidence evolves. We also understand that we don’t have to follow guidelines blindly. We should understand and consider them. And then use them to make informed health choices. I repeatedly say this to anyone who questions off label healthcare (my favourite kind of healthcare!): ‘I understand guidelines and learn the rules so I can break them safely’. That’s what being health literate does – it gives me an understanding of risks and benefits to make decisions about my health and what works best for me. And it gives me confidence to spot and push back on misinformation.
Critical thinkers also know that questioning medical advice is not the same as embracing conspiracy theories. It doesn’t mean throwing the baby out with the bathwater as you hastily reject modern medicine in favour of snake oil salespeople. It certainly doesn’t mean denying the effectiveness of a vaccines. And it doesn’t mean trusting Instagram wellness influencers.
More than ever, now is the time to do some questioning – to question who is spreading health information and consider their motives. What are they selling? (Case in point: Jessie Inchauspe who offensively calls herself ‘Glucose Goddess’ while selling her ridiculous ‘Anti Spike’ rubbish as she spreads fear about perfectly normal glucose fluctuations in people without diabetes). And a question that right now should be front of everyone’s mind: What power grab is behind the way someone is positioning themselves as an oracle of health information?
This post is about health literacy in general, but because this blog is called ‘Diabetogenic’ and I have diabetes, most people reading will be directly impacted by diabetes. And if there is any silver lining in this shitshow, it’s this: We’ve been dealing with health misinformation about our condition for decades, so in some ways, we’re probably ahead of the curve. We’ve had to wade through the myriad cures and magic therapies, the serums and pseudo-therapies. And the cinnamon – so much cinnamon! We’ve been standing up for science, challenging misinformation, and ensuring that diabetes health therapies are based on evidence, not fairytales. We’ve expected truth in our healthcare. It’s seemed the normal thing to do. Now it feels like a radical act to be a critical thinker.
We are a crucial point because health is being weaponised more than ever. Someone told me the other day that my lane is diabetes and health, and I should leave politics out of it. It’s laughable (and terrifying) to think that anyone doesn’t understand that health is political. It always has been. And even more so right now. We are seeing in real time political figures (and rich white men who own electric car companies) weaponise health misinformation for their own agendas, and scarily people are listening to them. They are elevating unqualified voices and aligning with conspiracy theorists, giving dangerous misinformation legitimacy. (And if you think that it’s all eerily familiar, you’re right. It’s already happened with climate change.)
Your radical act is to be smarter, to be more critical, to question sources and motives; follow reputable sources, don’t share viral posts before fact checking (Snopes is super useful here). Don’t reject credible advice and information in favour of conspiracy theories. Stack your bookshelves with books by qualified experts (I’d recommend starting with Jen Gunter’s holy trinity – The Vagina Bible, The Menopause Manifest and Blood and Emma Becket’s You Are More Than What You Eat), including lived experience experts who base their healthcare on legitimate evidence. Follow diabetes organisations like Breakthrough T1D (JDRF in Australia) for research updates and community efforts and be smart about which community-based groups you join. If moderators are not calling out health misinformation, I’d be questioning just how the group is contributing to diabetes wellbeing.
We know knowledge is power. But that knowledge base has to be grounded in fact, not fiction. Health literacy is critical because misinformation isn’t going anywhere, and neither are the people pushing it for profit and power. My resolution is to sharpen my critical thinking skills, ask questions, and refuse to let bad science set us backwards and cast a dark shadow over the health landscape. Who knew something so fundamental could be such a radical act?
Colour me unsurprised they couldn’t back up their claim with evidence.
Diabetogenic 