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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.
Today, diabetes stopped me. It does that, which is why I am always somewhat confused at the toxic positivity of statements such as ‘diabetes doesn’t need to stop you’.
It stopped my plans for a walk with my kid because my blood glucose levels, for some reason, wouldn’t budge beyond 2.5mmol/l.
Ad then it stopped me joining a meeting on time because I accidentally ripped my pod off (door frames should come with a diabetes tech hazard warning) and the entry to my home office looked like a crime scene as blood gushed from my arm, all over the paintwork and down onto the floorboards.
That was just today. These may seem quite trivial, but they are just a couple of moments in time explaining how diabetes does indeed stop us in the moment, and in more significant ways. We can say that diabetes doesn’t stop us. And that may be the case. Until it does:
Until I am paralysed by fear of my kid having inherited the genes that have meant I have T1D.
Until I am overwhelmed by the fear of the unknown of what diabetes has in store for me tomorrow. Next month. Next year. Next decade.
Until I am told that I have developed some diabetes-related complication and I start catastrophising about how it will mean I’ll lose my independence.
Until I am feeling so burnt out by diabetes that I am unable to do the tasks I need to make diabetes just run, keep up with and fill insulin prescriptions, remember to order pump consumables and CGM supplies. (Oh, hey! Stripped Supply can help with this!)
Until we face stigma from random strangers in a café which may stop us doing the diabetes tasks that we need to do to simply stay alive.
Until a night of high glucose levels means I need a few hours of recovery, stopping me from carrying out the plans for the following day.
Until a bout of gastro leads to a bout of DKA and I find myself being forced to stop everything, and instead spend hours in A&E. (Or, if I’m lucky and have access to the VVED diabetes service, flaked out on the sofa managing at home.)
Suggesting that diabetes needn’t stop us ignores the systemic barriers that are a very real driver to diabetes stopping us. And campaigns rooted in toxic positivity do nothing to actually address those barriers.
Diabetes still means people are stopped from pursuing the career they have always wanted. And in some cases, it stops people from continuing the careers they have already built.
The considerable costs of diabetes – even in a country like Australia – stops people from doing a lot of the things they’d like to do. For some, the impact of diabetes on the family budget stops weekly food shops, other healthcare needs being met and household expenses being covered, and stops holidays from happening.
In some countries, where insulin is not easily available, or available at all, diabetes literally stops people from living. It’s pure privilege and a luck of being born in Australia that means this isn’t my reality.
Diabetes does stop us. And when we suggest that diabetes shouldn’t be a barrier and shouldn’t stop us, it erases the reality of day-to-day diabetes. And it can make us feel as though we are failing if we do need to stop and take time out.
Happy National Diabetes Week in Australia to all who celebrate. And for those of you who occasionally, or frequently find that diabetes does actually stop you sometimes, I see you.
More?
This article I wrote for diaTribe many years ago.
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.
During the World Health Assembly in Geneva in May, there was an interesting shift as the days of the meeting progressed. I am always on high alert about the language used at these meetings (remember the ‘adherence’ event last year?), and this year, there was a definite shift in the words used when referring to people with lived experience of the health conditions discussed in different sessions.
Lived expertise started popping up, used by session chairs and moderators. This didn’t just happen by chance. For some time now, bolshy advocates (hand raised and waving…bolshily) have been stressing that what people with lived expereince bring to the table is indeed expertise. No one else can do it, and it is an essential part of any discussion.
During one of the audience discussions, I made the point of highlighting the importance of framing what people with different conditions bring as expertise. I emphasised that there is no one else capable of bringing that perspective and knowledge. The following day the moderator from that session introduced speakers with diabetes as having lived expertise. One of my colleagues reached over to me and tapped me on the arm: ‘Look at that! She’s changed her language from yesterday’s session’.
This shift is reflected in the new Meaningful Community Engagement framework used at ALIGN-T1D, where there is the clear acknowledgement that lived experience is expertise. (Disclosure: I work in the Global Responsibility team at Breakthrough T1D, the secretariat of ALIGN-T1D). It’s not just a framework document – it’s genuinely embedded in the project’s work and governance structure, and similarly, more broadly throughout the whole organisation. Can I tell you the utter joy I feel when colleagues without diabetes are the ones spearheading this language change rather than it being the person with diabetes! I see them doing it not only deliberately, but because they mean it.
Lived expertise in the diabetes context
I think for some people with diabetes it might take time to come around to using the moniker ‘expert’. I wrote years ago about how some people feel the term ‘advocate’ is loaded, and how not everyone who engages in advocacy feels comfortable adopting the label. I imagine for those people, coming on board and referring to themselves as experts might be a stretch. I’m curious as to why, and I wish that the imposter syndrome or whatever it is that is holding them back disappears so they can recognise the skill and expertise they bring.
While everyone with diabetes has expertise in their diabetes, we also need to recognise that there are expertise and skills that are learned. If we genuinely want lived expertise to be valued in the same way as other forms of expertise, we need others to understand that too. Otherwise, we see tokenism flourish as ‘anyone with diabetes will do’
For example, my expertise as a diabetes advocate lies in the areas upon which I have lived experience and also laboured experience. (For more about the four Ls of experience, please see this incredible piece in Diabetologia last year, led by Linxi Mytkolli with contributions from other #dedoc° voices from around the world.) With that knowledge, I know that I absolutely have expertise in what it means to live every day with T1D: the relentlessness, decision-making, stigma, language, healthcare interactions and the countless ways diabetes intersects with the rest of life because I have lived that reality for decades and spent years examining and articulating those experiences through my advocacy and writing. I don’t have expertise in living with T2D, or T1D and experiences that differ significantly from my own. That’s why I say no far more than yes when asked to act as a community representative.
My work – my laboured experience – means that I bring expertise around diabetes language, stigma, peer support, community engagement, advocacy and strategic communication. I have sat on numerous advisory boards and steering committees and, over time, developed the skills and expertise to lead and chair these groups. After spending years of acting as organisation spokespeople, I have expertise in media engagement and messaging. If I was asked to lead the design a diabetes registry or epidemiological study, I’d say no – that’s not where my expertise lies.
The problem with recognising lived experience as lived expertise is that there remains the issue of tokenism. If people’s expertise and skill as advocates or advisers or community representatives are overlooked, and anyone with diabetes is considered suitable, then we diminish the expertise they bring. To be involved in decision-making and advisory processes means having the confidence to push back, to challenge assumptions, to ask difficult questions and to recognise and overcome the real and perceived power imbalances that often exist in these spaces.
I will always say that people with diabetes should be centred and involved in all aspects of diabetes, but perhaps the caveat to that there needs to be consideration to match the right person with the right expertise to the right role. And that shouldn’t be surprising. After all, we readily accept that executive leadership positions, policy roles and research leadership roles require specific expertise and experience. Lived expertise should be treated with the same respect.
Recognising lived expertise means changing the questions we ask about who is involved in projects, advisory groups and decision-making processes. Instead of asking, ‘Do we have someone with diabetes at the table?’, we should be asking, ‘Whose expertise do we need?’ and ‘What experiences, skills and perspectives are missing from this discussion?’. Those are very different questions, and they lead to very different outcomes.
It also means being prepared to invest in people. We would never expect researchers, healthcare professionals or policymakers to become experts without mentoring, support or opportunities to develop their skills. The same should apply to lived expertise. If we want meaningful engagement, we need to support people to build confidence, gain experience and develop the skills needed to contribute effectively.
There’s a social media…thing…at the moment: Yes…but*. It’s designed to show the contrast between the glitz and glamour of perfectly curated socials feeds for the reality of life.
In the diabetes world, it’s not new. For years now, many of the chronically online (and the less-chronically online? Chronically less-online? Me?) have pointed out that the shiny Instagrammable version of diabetes isn’t the reality.
In fact, these days, diabetes to me is more ‘Yes…and?’.
I’m exhausted thanks to the relentlessness of diabetes? Yes…and? Of course that’s the case. Diabetes demands so much of us.
I’m over the daily grind of diabetes? Yes…and? What else is to be expected? Diabetes bores the shit out of me.
I’m burnt out thanks to diabetes? Yes…and? Who isn’t? In fact, tell me you’re not burnt out at least some of the time and I want you to speak to me as though I’m five years old and teach me your ways.
I’m standing on a stage giving a talk despite having high glucose levels? Yes…and? Adrenalin, forgetting to bolus, a dodgy pod or infusion set, stress, weather… Didn’t Adam Brown write about the 42 factors that impact glucose levels a decade ago?
I ripped out a sensor on my arm because I walked into a doorframe? Yes…and? I still have no spatial awareness of my body. Or doorframes.
Someone said something stigmatising about diabetes? Yes…and? People are idiots and don’t understand diabetes. (Although I probably will call that rubbish out because people don’t get a free pass to be stigmatising arses.)
Diabetes technology is in equal measure brilliant and imperfect? Yes…and? Two things can be true at the same time.
Some bloke (who doesn’t actually live with diabetes) is being an arsehole to a woman with diabetes who is highly respected and trusted in our community? Yes…and? Bullies in the community have existed forever, and will forever, and misogyny online is sadly alive and well.
I had three hypos before lunch? Yes…and? Sometimes diabetes just chooses violence.
I nailed my time in range yesterday and today it’s rubbish? Yes…and? Yesterday’s diabetes has never accurately predicted today’s diabetes.
I went to Italy for 22 days and packed 10 days of insulin? Yes…and? I’m #NotGoodAtDiabetes and have no idea why I would expect that to change any time soon.
A healthcare professional referred to me as ‘non-compliant’? Yes…and? People continue to confuse judgement for healthcare.
Another miracle cure has appeared in my inbox? Yes…and? Scammers gonna scam.
A diabetes organisation says people with diabetes are at the centre of all they do? Yes…and? Until I see evidence of PWD actually having an ability to influence, holding leadership positions in the organisation and being genuine partners and not props, it’s just tokenism wrapped up in a catchy slogan.
I have diabetes, and I’m kicking goals today? Yes…and? Those things have never been mutually exclusive.
I have diabetes, and I’m struggling today? Yes…and? Those things aren’t mutually exclusive either.
Social media has finally caught on that life isn’t all shiny and perfect? Yes…and? Welcome to diabetes. We’ve kinda known that forever.
on the streets of Jaipur.
Killjoy postscript…!
*Of course, nothing is really new. Artist Anton Gudim has been creating ‘Yes, but’ cartoons for years now, with far more finesse and creativity than any content creator jumping on the bandwagon.
Recurring themes in diabetes recur for a reason: they impact people with diabetes. And stigma is one theme that you will hear people with diabetes speak about a lot. A. Lot.
Last week at the World Health Assembly in Geneva, there was much discussion about stigma – both within the diabetes and in other health condition spaces.
Stigma harms everyone. It goes without saying that there is no good form of stigma.
When speaking with people from other health organisations, it was interesting to learn that many see diabetes stakeholders as being leaders in addressing stigma.
There was a lot of interest in how we had come as far as we have. I shared what I knew and what I’ve been involved in and there was awe at the number of different activities that have involved so many stakeholders.
I agree that we are making strides in addressing diabetes-related stigma. But I’m afraid I wasn’t quite as enthusiastic as the people I spoke to who seemed to think that we had it all sorted. That’s sadly not the case. Every single week I hear from people with diabetes about the stigma they are experiencing, and the discrimination they have to deal with because of diabetes.
Last week, I found myself cringing at the airport when a security guard mentioned that perhaps if my diabetes was better managed I could stop using the devices attached to my body. He knew, you see. His niece has diabetes and she doesn’t need one of those machines.
I was too tired after hours of travel to do anything more than roll my eyes and say ‘That’s not how diabetes works’, and suggest that he doesn’t offer strangers unsolicited advice. I wondered if he had the same level of comfort telling someone wearing a pacemaker what to do to better manage their heart condition. Probably not.
And I snapped a sassy response on the Instagram page of one of my favourite bakers when someone suggested that dipping rhubarb in sugar was a one way ticket to diabetes. As if that’s all there is to this highly complex condition.
I’m tired and yet the stigma I deal with seems quite superficial when compared with that of many of my diabetes brothers and sisters living in other parts of the globe.
Diabetes stigma is real. It is harmful. It needs to end. And we all have a role to play in getting us to that end. I say that knowing that sometimes it’s too exhausting to do anything – and that’s perfectly okay. The full time job of managing diabetes is more than enough. Busting stigma shouldn’t also be on our to do list.
But if you have time, if you have the energy, if you have the will, there are some easy things you can do.
Sign the pledge to end diabetes stigma. You probably already have, especially if you’ve been hanging around here for a while. So perhaps, you could spend five minutes sharing the link to the pledge, or finding someone you know hasn’t signed it, and asking them to. It takes under a minute.
If you’re doing any sort of diabetes advocacy about stigma, circulate the International Consensus Statement to End Diabetes Stigma. Evidence matters, and this document brings together 51 experts across 18 countries. It was published in the Lancet and it is an excellent foundation for any work in the stigma space.
And if you want to see a video of joy, watch the one linked below. This is a compilation of what happened at the Summit to End Diabetes Stigma held in Jaipur in March this year. I assure you that amongst the colour and vibrancy you see in the video, there were difficult discussions, impactful panel sessions and plans for how to make real change.
My new friends from last week were impressed with what’s been done in the diabetes space, and I agree – the community has done so much already. But we’re not done. There’s a lot more to do. We’ve come this far because dedicated people have worked collaboratively. Community members have shown up to share their experiences. I’m so pleased to be part of these efforts. And will keep rolling up my sleeves as we address what still needs to be done.
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!
You might think that a diagnosis of a new chronic health condition would be easier to navigate for someone with my understanding and knowledge of healthcare. And that with last year’s diagnosis of psoriatic arthritis (because it had been a while since I’d added a new autoimmune condition to the stable), that I would apply the same attitude that has worked with T1D.
I did do that. And it hasn’t worked. My first mistake was ignoring the very simple and basic fact that psoriatic arthritis is not type 1 diabetes. Most people probably would have realised that and not made assumptions. I am not most people.
I’ve been quite humbled by the overall experience.
I don’t have answers yet to how to manage this new(ish) condition. The pain is still persistent. The meds I was first prescribed did nothing other cause constant low-level nausea. I wouldn’t call it debilitating (the pain gets that designation at times), but it was unpleasant enough to make me feel bleurgh (technical term) a lot of the time. And to question whether drinking coffee was a good idea.
I have a limit to what I can take, and impacting my love of coffee hits that limit pretty quickly. I persevered for about six weeks with the meds and then decided that I’d had enough. The nausea wasn’t subsiding and the pain hadn’t improved at all. I had been told that it could take up to three months for the meds to impact the pain, so the fact that my hands still hurt pretty much every day wasn’t completely unexpected. I weighed up the pros and cons, and decided that I wasn’t prepared to add constant nausea and eating struggles to daily pain. And so, we went back to the drawing board.
At this point, I learnt about the rather technical little dance that needs to happen when it comes to the escalation of psoriatic arthritis drugs. From a rheumatology perspective, I have to give it three months before stepping up the ladder to the next type of medication. From a dermatology perspective, it’s only one month.
So, that meant I needed to see a dermatologist to prescribe the next drug. He announced that I had ‘failed drug 1’ and therefore would be able to try drug 2. After mentioning my failure three times, I politely interrupted and asked if we could perhaps reframe the conversation to say that the drug had failed me. I’m sure he rolled his eyes as I muttered something about language mattering, but he handed me a new prescription anyway.
But of course, it was never going to be a simple switch. My rheumatologist agreed that I’d been right to stop drug 1 due to the constant nausea. But she suggested we try an injectable version of it before stepping up to drug 2. Also, drug 2 is good for the psoriasis side of things, but less good for the arthritis side of things. ‘Keep that one in your back pocket for now,’ she said. We had a very brief discussion about the practicality of taking the injection, but we both kind of sped through that because we figured that twenty-seven years of T1D meant that injection technique and hygiene wasn’t something needing much attention.
I opened the first box of drug 1.2 on a Sunday night. In the box was one pre-filled, single dose syringe. I have never been needle-phobic, so, I wasn’t prepared for the involuntary gasp when I removed the cap from the syringe. The needle was not ‘just like an insulin sub-cut’ as I’d been reassured by the pharmacist and rheumatologist. It was significantly longer with a smaller gauge (smaller gauge = thicker needle). It looked scary. And needles do not scare me.
I sighed, pinched the skin on my leg where I could find a decent amount of fat and poke in the needle, pushing down the plunger, muttering ‘ouch’ for no good reason because it actually didn’t hurt. Appearances can be deceiving when it comes to needles.
This was all about four months ago now. Has it helped? Nope. Not at all. In fact, the side effects have been even worse. My weeks have taken on a new pattern: injection on Sunday night. Monday – Thursday: constant nausea (absolutely no appetite) plus exhaustion to the point of needing a late-afternoon nap. Friday: start to feel better. Saturday and Sunday: back to feeling normal. And then it starts all over again.
Meanwhile my hands still ached.
So, we’re moving onto a new drug. Will there be side effects? Maybe. Will I see an improvement in the pain situation? Maybe. Will I feel like I have some semblance of control over my health again? Who knows?
I don’t ever remember feeling this way with diabetes. Insulin just … worked. I mean, sure, there is the too much/too little thing that we all know about, but it does what it is meant to do. It lowers glucose levels.
But this has been entirely different and I feel quite naïve thinking that I was simply going to be given a drug to treat this ailment, said drug would fix said ailment, and then I’d just keep on taking it.
All of this has happened alongside managing diabetes and other health things that are constantly there. I’ve been fortunate that I’ve managed to find great healthcare professionals (albeit one who needs some work on his use of the word ‘failure’). My rheumatologist is absolutely delightful and understands my frustrations. I like a doctor who doesn’t tell me to push through or simply accept the lousy things. I appreciate her listening to what I want and knowing my priorities. And I like that she understands that this isn’t my first rodeo when it comes to chronic health conditions.
And yet, even with the great HCPs, and the drug options and the understanding a lot about health and healthcare I remain completely at a loss and humbled, because right now, I am not getting better. And being in pain is hard.
Apparently, there are half a dozen different drugs for me to try. And each one needs at least three months of trialling to see if it’s going to work. I don’t want to do the maths and think about how long it could take to find something that actually helps.
Who knew that all it would take for T1D to seem easy was a new autoimmune condition? Or perhaps it’s just that almost twenty-eight years of T1D-wrangling has lulled me into believing I know what I’m doing. I guess it’s all relative. I know that really, I am generally #NotGoodAtDiabetes (let me count the ways), but compared to dealing with this new condition, I’m actually brilliant. How utterly humbling.
Sunday is Feminist Christmas*. It’s the day that social media feeds turn pink and women get celebrated with morning teas (organised by women) and the lady folk are handed a cupcake (made by women) to shut us up and make us forget that women continue to live in a world designed and defined by patriarchy.
Isn’t that a joyful start to this article? I’ll wait while people shift uncomfortably and refer to me as an angry/difficult woman.
In the coming days in the diabetes world, you’ll see posts pointing to women in the diabetes landscape. These women are generally remarkable and doing great things. But oddly, rarely are the women whose faces appear on a social media carousel actually living with diabetes. A few years ago, I pointed out that while we should be recognising the clinicians and researchers improving our lives, women with diabetes are completely ignored.
So, a little hint to anyone who is putting together content for next week: don’t forget to also highlight the women with lived experience of diabetes who are actually doing so much of the work in our community. Those grassroots initiatives that continue to be life saving and life changing are very often powered by women with diabetes. And, as is often the case, these women do this work on a volunteer basis. All while managing a very demanding chronic health condition on top of all the other work women do.
In the meantime, you should all register for this year’s DiaLeb Annual Diabetes and Women Panel. This is the 7th year and I’m very excited to be on the panel with two remarkable women living with diabetes, and another two women with loved experience of diabetes. Be quick! It’s tomorrow!
Seriously, women with diabetes are brilliant. we deserve way more than a cupcake. But I’ll take one all the same if some bloke would like to organise it.
More on International Women’s Day at Diabetogenic
2023 – Deserving more than a cupcake
2019 – Interweb Jumble #34 – The IWD edit
*The brilliant Wilhelmina Stracke coined this term. You should follow her on Instagram.
So what has been occupying your minds over the first few weeks of the year? Well, for a while there (and still), mine was trying to understand the veritable PR disaster of the Adelaide Writers Week (AWW). Niche? Yes. Relevant to diabetes? Also yes. In a roundabout way.
Let me set the scene. A writers festival in Australia was cancelled after one of the speakers had her invitation rescinded. The simple explanation of this is that the speaker, academic and author Dr Randa Abdel-Fattah had made some comments on social media that were deemed controversial by the AWW Board. More concerning, they connected these comments with the shootings in Bondi in December last year, effectively associating Dr Abdel-Fattah with the shooters. I’m actually not here to comment on Dr Abdel-Fattah, other than to say her treatment was appalling. There has been a lot of commentary, and if you’re not from Australia (or are from Australia but somehow managed to miss it) simply google AWW for details of what happens when decisions are made without consultation or understanding of the affected community.
I specifically want to focus on one part of the whole saga and that is the decision makers responsible for the PR nightmare. The Board of the Adelaide Festival (who is also responsible for the AWW) made the decision without the support of AWW director, Dr Louise Adler AM or her team. Dr Adler, in a letter published in the Guardian after she resigned from her role highlighted that the board was ‘composed of individuals with little experience in the arts ‘, which lead to decisions being made without cultural context and an absence of understanding consequence.
Even before I’d read Dr Alder’s compelling and commentary, the conversations I was having with friends and family were homed in on the same themes. We knew that the other writers at the festival would withdraw from the festival, one by one. We knew that Dr Adler had been treated terribly. And we were waiting for the gaslighting that would come from the Board, and anyone else involved in the decision making.
We knew, because we are a family of artists. My husband is a professional musician. My daughter is studying writing and journalism and has a part time job writing for a local newspaper. I studied music at university. Our friends are musicians, composers, writers, film makers, makers and journalists. We’d had discussions with many of them about how the Board’s lack of understanding of the arts sector, the way the community would respond, and how the community would be impacted. The words I used were ‘They have no skin in the game’, and by that I meant that not only couldn’t they see what was coming, they could also walk away relatively unscathed. Their careers were unlikely limited by their involvement in the decision and even though the entire board resigned, I would bet that it hasn’t made a dent professional standing or income.
Yet it wasn’t the arts scene that was the focus of my thoughts when I considered the AWW board, the decisions they made, the lack of insight into community response or the inevitable and highly predictable fallout.
It was, of course, diabetes.
I found myself wandering around the house and on daily walks muttering ‘Nothing about us without us’ with a growing frustration that this lesson keeps having to be learnt the hard way.
It may be different communities and different contexts, but we’ve seen similar incidents play out just like this in the diabetes world for years. People with diabetes are not included in decision making processes. But then sit there, watching the fall out.
The process is the same. The positioning from the people making decisions is the same. Think about some pretty ridiculous diabetes decisions in recent years and think about who made them, and who wasn’t consulted. Think about the fallout from a particularly nasty diabetes campaign that adds to diabetes-related stigma. It’s with disbelief that I think back to campaign discussions when I was told outright that offending and upsetting people with diabetes when a campaign launched was the price to pay because we weren’t the intended audience, as if we would be magically shielded from the stigmatising messaging. And that it was an unintended consequence in efforts to inform the general public.
Those gaslighting me weren’t going to be in the firing line next time someone made some horrid comment about diabetes. It wasn’t their weekend that was going to be ruined when some smartarse in a supermarket queue or café said something about sugar causing diabetes or personal responsibility or how diabetes is a ticking time bomb.
When a decision is made that directly impacts people’s lives, surely those people should be in the room, at the table and have their voices heard the loudest. Surely. It’s so frequently not the case when diabetes decisions are made. It wasn’t the case when the AWW Board decided to cancel Dr Abdel-Fattah’s speaking engagement.
And so, the AWW was cancelled after almost all the writers on the program withdrew and the Board resigned. Interestingly, most of the Board members sit on other boards, so their status as ‘leaders’ and ‘decision makers’ doesn’t seem to be too impacted. Meanwhile, those writers have lost one of the few (and seemingly shrinking) opportunities to meet to share ideas and celebrate their community. Their incomes have been impacted. The chance to get their work in front of an audience has disappeared.
Nothing about us without us. It seems that this little catch phrase has been ignored too often, unless being used in convenient and cute attempts to demonstrate (usually lacking) community engagement. Instead, maybe it’s time to put us on boards and in leadership and decision-making positions. Maybe it’s time to actually listen to the people who know. Because our skin? It’s the one in the game more than anyone else’s. Raw, exposed and in the firing line.
Diabetogenic 