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Someone asked me the best question the other day and it was this:
‘What is a really important characteristic or personality trait to have if you live diabetes?’
I thought about it for a while. The first thing that came to mind was resilience. The never-ending nature of diabetes means that staying power, strength, plenty of flexibility and being able to push on and through is needed to deal with just the day to day.
And so, resilience was the answer I gave.
But I haven’t been able to stop thinking about that question, and I think that I have a better answer.
Curiosity.
Being curious is not only important, but it leads to some of the best outcomes and opens doors to aspects of diabetes that I may have otherwise missed.
It has served me well. Being curious about how others with diabetes were interacting and the opportunities they were creating to build communities is the reason that I delved into the world of online diabetes peer support. I asked a lot of questions to learn about collaborations between industry and advocates to see how our expertise was bring recognised and utilised. From there, I was able to develop those same sorts of activities locally that also had a global bent.
As an advocate, being curious about the experiences and knowledge of others with diabetes living in different places around the world has meant that I have a far broader understanding of the challenges, the successes, the things that work well and the things that don’t, and the health systems of people in the global diabetes community. It has meant that I look far beyond my own perspective, instead learning and asking about others. It is one of the reasons that I am so often invited to participate in advisory groups or facilitate discussions and other initiatives. Those doing the inviting are aware that my knowledge and understanding will never just be that of what’s going on in the Australian sector – I will be able to point them to people in the global community who can provide wider and more diverse experiences.
I have frequently referred to diabetes as a petulant toddler, but I think that acting like one, with regular sprinklings of ‘But why?’ is often a perfect response when a diabetes therapy is offered.
Asking ‘But why?’ has meant that I’ve never accepted the status quo or simply done what I’ve been told. I know it has driven HCPs to distraction in the past, but it has helped tailor care to what I need and centres me and my diabetes in conversations.
Even before that, being curious about how a HCP operates, the way they engage and their interpretation of person-centred has resulted in me connecting with the absolute perfect HCPs for me…and leaving the ones that were not.
Being curious about different technologies was the starting point for me to investigate further and learn from others and ask questions to work out just how those technologies might work for me. I’m not just talking Loop. It was that curiosity that had me seeking out the few people using pumps in Australia back in 2000 to find out just what it meant to wear one. The questions I had couldn’t be answered simply by reading what the pump companies had to offer. I was curious about the realities of pump therapy.
I’ve also come to appreciate curiosity as a trait in others. My own endocrinologist is curious in her approach and the way that she conducts our consultations. Her ‘How are you?’ at the beginning of consultations isn’t a perfunctory question. She uses that as a launching pad to get a good idea of just where I am at, and then listens as I guide the discussion. When I spoke with her about Loop, for example, she wanted to learn more – not dismiss it as a dangerous endeavour. I have appreciated that desire to understand more and her own curiosity because I know it means that
And the most wonderful GP I ever saw (damn him for moving to bloody Darwin!) had never seen an insulin pump the first time I walked into his office. He asked me about it, but better yet, the next time I saw him, he had read up and had more questions. His curiosity helped expand his own comprehension of diabetes, and I was so grateful that he thought like that.
Being curious means that there are always more questions to ask, different options to investigate and keeps my desire to learn active. It’s meant that I’ve never settled, always intent on finding out more or difference options. I am curious and I search for curiosity in others because there is still so much about diabetes that I need to understand. Undoubtedly, the best way to do that is when my mind is open and I am curious, and I am around people who have that same open-minded approach.
Gosh, it’s been a hot minute since I last did one of these. The whole point of Interweb Jumble posts on Diabetogenic is to highlight anything that has caught my interest in the online diabetes world, write about initiatives I’ve been involved in, and, most importantly, to elevate the great work being done by others living with diabetes. Building folks up and promoting their amazing efforts has been at the heart of what I do, so I’m always happy to share what others are doing.
Grab a coffee, tea or shandy, (Don’t. Don’t grab a shandy), and read on.
Diabetes Chat
YES!! There is a new place to congregate online, in a different format, and with this one, you get to hear people’s voices. (Sorry to everyone who had to endure my 7am Aussie accent last Tuesday!). This is a new initiative that’s been set up by three DOC folks – Tom from the UK, and Chris and Sarah from the US, utilising a new feature on Twitter called Spaces. It’s a terrific way to host an online peer meeting, creating yet another time and place that is BY people with diabetes, FOR people with diabetes. There is a weekly guest who gets put through their paces with terrific questions from the hosts and those listening in, and an open mic chat time as well.
It’s super impressive to see people from all over the globe participating. It reminds me a little of the DSMA tweetchats which are very welcoming and open to all, regardless of where you live around the world.
Search #DiabetesChat on Twitter for more.
dStigmatize
The team at diaTribe has once again tapped into one of the important issues, and much spoken about topics in the diabetes community and developed a terrific new website addressing diabetes stigma. It’s called dStigmatize and you can find it here.
I’m delighted to see Diabetes Australia’s work on stigma and language highlighted so prominently on the site (disclosure: I work at Diabetes Australia and have been involved in this work), including the videos from last year’s Australian National Diabetes Week campaign, which have been viewed hundreds of thousands of times.
Seasons of…diagnosis
New research out of Finland asked if more people were diagnosed with type 1 diabetes during colder months. You can read the paper here.
And a discussion on Twitter about it here.
HypoRESOLVE podcast
The HypoRESOLVE comms team created a new podcast to showcase the incredible work of this researchers involved in the project, with a strong emphasis on how people with diabetes are involved in the project. I was delighted to host this podcast and speak with some truly remarkable clinicians and researchers as well as other people with diabetes who are on the projects Patient Advisory Committee. (Disclosure – I am on the HypoRESOLVE PAC. PAC members are now paid an honorarium for our time working on this project, however we were not at the time of recording or working on this podcast.)
Here is the most recent episode (on Spotify).
Better engagement with PWD = better services
Great paper from a team out of the UK looking at how connecting with the lived experience expertise of people with diabetes, health professionals and diabetes health services can improve service delivery.
One of the co-authors is one of the GBdoc OG, Laura (@Ninjabetic1 on Twitter), and it’s great to see her name back in the diabetes world, contributing to this important discussion.
And the DDA podcast…
The Danish Diabetes Academy developed a podcast out of their Winter School that featured Postdocs who had participated in the academy speaking with others in the diabetes world to discuss who academic researchers work to ensure their research reaches and benefits those they are researching. I was so honoured to be invited to be interviewed for their first episode and answered questions about how communication is important when engaging people with diabetes to be part of the research process. You can listen here.
Language Matters for Portuguese speaking friends with diabetes!
The latest in the Diabetes #LanguageMatters stable is this document out of Brazil. Always terrific to see more and more statements coming out, highlighting the importance of language and communication in diabetes.
Thinking of starting on an insulin pump?
If so, the awesome Grainne at Blood Sugar Trampoline has you covered with this post. It is truly one of the most measured pieces I’ve read about things to consider if you are on the path to starting an insulin pump. The gushiness and superlatives that many of us resort to when banging on about how much we love our pumps are replaced with sensible, and practical advice and suggestions. If this is where you’re thinking of taking your diabetes management, Grainne’s piece is a must read.
Who doesn’t want to come to ATTD!?
#dedoc° voices is back and heading to ATTD in April this year, and applications are still open if you would like to be considered as part of the program. Successful applicants will be granted access to the entire ATTD program, giving them an opportunity to share what they see and learn with their networks. Make your submission count – this is a competitive process and success is more likely for those who take the time to provide details of how they will be involved in the program. Details here.
(Disclosure: I am an advisor to the #dedoc° voices program. I do not receive any payment for this role.)
World Health Organisation
In March, the World Health Organisation, through the Global Diabetes Compact, is hosting a two-day focus group for people with lived experience of diabetes. If you’re interested in getting involved, there is an expression of interest process you can complete here.
Also from WHO is this survey which is asking people with diabetes how to improve messaging and communication. You only have until 28 Feb, so get onto it now! (Disclosure: I was a volunteer consultant in the development of this survey)
Massive kudos to the Global Diabetes Compact team who are doing an absolutely stellar job engaging with the community. Always so terrific to see!
A diabetes sea shanty…
You’re welcome.
(Follow @TypeWonDiabetes on Instagram here.)
People with diabetes and their involvement in research
An end of year delight was this article that I co-authored making it to publication. The article is about how to better involve people with health conditions in research (which really seems to be something I’ve been very focussed on recently!).
Spare a Rose – last push
February still has a last few days which means that Spare a Rose isn’t over yet. You can still donate and contribute to this year’s total and support people with diabetes in under-resourced countries through the Insulin for Life program.
It seems that in diabetes, we spend a lot of time looking back.
But there is nothing we can do about what has happened before this moment. There is nothing we can do about days, weeks, years, decades of doing less diabetes than we would like to. There is nothing we can change about using less advanced tech, or less sophisticated insulins. There is nothing we can do about years of not seeing diabetes healthcare professionals, or seeing health professionals who weren’t giving us the best care. There is nothing we can do about missed screening appointments. There is nothing we can do about forgotten boluses and the days of above range glucose levels.
There is nothing we can do about the time before a diagnosis of a diabetes-related complication, and equally, there is nothing we can do about the time before a diagnosis of type 2 diabetes.
That time is behind us, and no amount of regret, or wishing we’d done things differently, or even ambivalence about it, can change where we are right here, right now.
Perhaps that is one of the reasons that the blame and shame that is intrinsically tied up in proclamations of ‘If only you had <insert whatever in the past we didn’t do>’ are so damaging. Because instead of focusing on what can be done now, and in the future, we are dragged back to what we didn’t do earlier.
Those myriad inspirational quotes and memes we see on every social media feed and in posters on office walls about not being defined by the past don’t seem to have made their way to diabetes thinking. Instead, we are faced with heads shaking, fingers pointing, and knuckles being rapped for what are considered failings of our diabetes-past. And our own judgement as well of our own shortcomings.
Of course, we can learn from our history – we can reach back and remember things that we know work and things that don’t, and use those moving forward. But living with regrets will not change the outlook. And regrets will not help with our diabetes present, and how it might shape our diabetes-future.
Dealing with today’s diabetes is already a lot. A. Lot. Looking backwards and seeing a shopping list of missteps just adds extra burden. Really, all we have in our arsenal is what we can do right now, and perhaps the hope of what might be around the corner. That’s what we have. And that’s what we can do.
I talk about peer support being life-changing and life-saving. I say those words frequently when asked to speak and write about why peer support is so important to me, and what I hear about the value of peer support from others in the diabetes community.
But does it get more life changing than this?
Today, I’m writing about Jason and Irina, a couple of people I’m lucky to call friends.
They met during the weekly OzDOC tweetchats back in October 2016. Those weekly, rapid-fire hours of diabetes chatter fostered many great friendships. And this particular friendship, formed in between 8.30pm and 9.30pm on a Tuesday evening, led to Jason moving states to be with Irina.
They really did start with a tweet!
This is one of those magical stories where diabetes may be the thing that brought people together, but the connection is so, so much more than that. I’ve been lucky enough to catch up with Jason and Irina a few times in person over the (pre-COVID) years. I remember after the first time I met them, I walked away thinking what a magical couple they are – so right for each other.
It really wasn’t a surprise when I found out that they were engaged. Jason kept me updated with their wedding plans and I was so honoured that my family was invited to share their special day.
And then COVID happened.
There’s no need to talk about how the pandemic threw everything it could at this couple to try to disrupt their wedding. I lost count of the number of times their big day was rescheduled, Omicron being the most recent attempt to try to stop it.
But, as it turns out, Jason and Irina’s yearning to get married was way, way stronger than even the most virulent strain (so far) of COVID. A couple of weeks ago, Jason messaged to say that they were going ahead, with a smaller celebration.
And so, on Sunday of last week, the happy couple got married in what Jason described as a fairy tale.
So much love to the two of you. I can’t take any credit at all for this gorgeous union – all credit for that goes to these two lovebirds. But I can say that it started with a tweet in an OzDOC tweetchat. And that is pretty damn amazing!
Viva gli sposi!
Sam Seaborn : You wrote a concession?
Toby Ziegler : Of course I wrote a concession. You want to tempt the wrath of the whatever from high atop the thing?
Sam Seaborn : No.
Toby Ziegler : Then go outside, turn around three times and spit. What the hell’s the matter with you?
This is from a scene in an episode of the West Wing, one of my all-time favourite TV shows. It’s election night, and President Bartlet’s staff are waiting for the call to be made. His communication director, the ever-curmudgeonly Toby Ziegler, is admonishing his deputy, Sam Seaborn, for making any sort of prediction or assumption about the outcome of the election, even though the President is a shoo-in for his second term.
I get it – the idea of jinxing things is one of those superstitions that many of us hold close. I believe in science and evidence and research and nothing else, but even so, I throw salt over my shoulder, tap the table (or my head) and say ‘touch wood’ anytime I predict or claim something positive is going to happen.
This introduction is purely to lay the foundations for a lot of tapping on wooden doors and tables, throwing salt over my shoulder, wearing an evil eye charm, and making the ‘cornuto’ sign (Italians will know…) at my laptop at the end of each sentence, because I am sure that by the end of the week (if not sooner), this post will not have aged well at all.
But anyway, here goes…
COVID has made its way to Casa Diabetogenic. We’ve spent the last two years desperately doing all we could do avoid it, obsessively following health orders to the letter, being super cautious about being in crowds, amassing a huge collection of masks (and wearing them any time we left the house), and being a pin-up family for vaccinations, getting our jabs the minute we could, and boosted to boot.
Despite that, COVID announced itself on Sunday morning after a round of RATs. In the olden days, we would go out to brunch. In the present days, we do a saliva test to see if we have the plague.
Two of the three inhabitants of the house were positive. The one with diabetes (me!) was not. And I remain that way (salt over shoulder) forty-eight hours later, (touch wood).
The positive tests became hour zero and from then on, we were in full isolation mode. Aaron was confined to our bedroom, the kidlet to her own. If either of them need to leave their room for any reason, they send out an alert, and mask up, and wipe down any surface they’ve as much as looked at sideways, and empty half a can of Glen20 in their wake.
I prep and deliver all food and drinks to rooms and am at the beck and call of the infirm. We Facetime each other throughout the day to chat and check in on symptoms. I bossily remind them to keep up fluids and eat the segmented oranges I’ve delivered to them. I am annoying myself, so can’t even being to imagine how much I’m annoying them. We haven’t been in the same room as each other at all, and only see each other in the flesh when we are eating meals in the garden – sitting away from each other, necessitating speaking in very loud voices, giving our poor neighbours unwanted insight into our conversations.
It’s slightly absurd. Until those two lines appeared on those two tests on Sunday morning, we had been carrying on as normal and not giving a thought to needing to isolate from each other. I’d just gotten out of bed, a bed I’d been in for eight hours with my COVID positive husband lying right there. I’m pretty sure the night before I’d handed him my fork so he could have a taste of something I was eating. While we were super cautious about being around others, we didn’t for a second think that we needed to worry about our little unit. Home was meant to be a sanctuary. Now I’m trying to elude the little virus that could from inside our own home. It’s the shittiest game of dodgeball I’ve ever played.
My anxiety has remained mostly in check. I’ve gone into fight mode as I desperately try to disinfectant spray any hint of the virus. I only care that my family is okay and not feeling too poorly or taking a turn for the worse in any way. I’m worried that they won’t recover easily and quickly. I can’t stop thinking about long COVID.
And then there are the flashes of terror (like the middle of the night when I’m lying awake) and I wonder how my body WILL behave when (if?) it gets COVID and then, for a few moments in the cover of darkness, I find myself becoming a statistic, explained away by my underlying condition. They’re the words that ring in my ears thanks to every single presser from the NSW government. It’s so bleak and terrifying in those moments, and all I can do is remind myself that even though there are no guarantees, I am doing all I can.
I’m obsessively checking my CGM because if ever there was an early warning alarm system, it’s my glucose levels. It’s a reliable tell to let me know that an infection is brewing. Straight, steady, in-range numbers greet me in the mornings, insulin doses not needing to be superpowered by Loop to keep me that way.
All the while, I’m trying to understand how it is possible that I remain COVID free (cornuto sign). Because that makes no sense at all. Other than to believe I am some sort of extraordinary, turbocharged powerhouse of immunity (I mean, the vaccines and boosters probably have something to do with it too…)
Friends and family keep checking in and I boast about how, for once, my broken body is being legendary. ‘Are we…superhuman,’ asks my friend Georgie who has also managed to remain COVID-free despite being exposed left, right and centre, even though her immune system and mine match in their hopelessness. (Georgie, I just waved my evil eye charm around for you.)
I have developed this ridiculous superiority complex that is bound to be my downfall. Is it possible that my stupid, fucked up, overactive immune system that hasn’t shown any reason for me to believe it knows what it’s doing and keeps killing off things it shouldn’t has decided to be overactive in the right way, destroying COVID as it’s tried to move in? Do I have an invisible protective shield around me that has transformed me into some sort of crusader, fighting the evil coronavirus and winning? (There is a small salt mountain now behind me. Also, I’m an idiot.)
But then I remember that pride comes before a fall, and that this body of mine and this immune system of mine are not the sharpest tools in the shed at the best of times. And that thinking, let alone writing for anyone to see, that perhaps I might escape this round of COVID is only going to come back to bite me. And I think that I really should listen to Toby Zeigler, because truly, the last thing I want to do is to tempt the wrath of the whatever from high atop the thing. Probably best I don’t hit publish in that case…
Christmas eve and Melbourne is turning it on. Gorgeous sunshine and divine mid-twenties temperatures. It seems perfect and would be if it weren’t for the C word’s new O variant that is looming heavily. I went to the Queen Vic Market this morning with my sister for our traditional oyster breakfast, and kept having to talk myself off the ledge of overwhelming anxiety at the thought of being amongst far more people than I’ve grown comfortable.
But amongst it all, Christmas is here. A huge jar of buttery shortbread stars sits on the kitchen counter, grabby hands reaching in anytime we walk by. Crostoli have been made, eaten and more made. The Christmas tree is decked and glittery, wrapped gifts strewn. There is freshly assembled tiramisu in the fridge, time doing its magic so that when it’s served up tomorrow, it will be a perfectly pillowy delight of coffee and mascarpone. There is lasagna ready for this evening’s small gathering here. Tomorrow will see another two family get togethers and Boxing Day will be the final of the family assemblies.
I feel oddly relaxed, which is lovely because often at this point of the game, I’m a stressed mess with a list the length of all the versus of the 12 Days of Christmas, wondering where I can still find wrapping paper, and hopeful that the local bookshop will still be open for those last minute presents I forgot.
And so, I’m signing off for a few weeks as I enjoy some time off, dappled sunshine to light my days, memories to be made with my beautiful family, a new kitten cuddle, pups to take to the park, friends to hang out with, including some I’ve not seen in two years who somehow miraculously booked tickets on flights that actually made it to Australia. There will be walks along the beach, afternoons languishing on the back deck with my Christmas books (presumptuous of me, but it’s a good bet), outdoor tables at cafes where I’ll sit for hours, alternating between hot and iced lattes, and lots of food. And as little time as possible dedicated to dealing with diabetes, because I am so lucky that Loop has been part of my life
Two years ago, I was wrapping up one of the busiest advocacy years I’d ever had. My passport had been stamped well over twenty times as I flew in and out of countries across the world, presenting, running workshops, sitting in ad board meetings, fighting the good fight. It was exhilarating, exhausting, exciting. And 2020 started off in the same way. Until the world changed. But the advocacy efforts haven’t stopped. In fact, this year was probably my busiest ever. 2022 is already shaping up to be just as involved as this year, more so probably. I’m already scared to look at some months on my calendar, as dates are filling fast. I wouldn’t want it any other way. But that’s next year.
Thanks to everyone who has stopped by this year. I’ve had the most gorgeous messages from people – words of support, asks for help, messages of solidarity. I’m always so grateful to people when they reach out. And I’m grateful to everyone who has taken the time to read my words. I’ve always said that hearing the stories of others helps me make sense of my own diabetes. I hope that perhaps my stories here have helped others in similar ways.
And so, there is only one thing left for me to do before I close my MacBook and let the battery run flat over the next couple of weeks. And that’s make a donation to Insulin for Life’s Secret Santa campaign. Thanks to everyone who has already donated to #IFLSecretSanta this year. Hundreds of dollars of donations followed my earlier post about it. If you’ve been meaning to make a donation, please do. It is truly one of the most important things you can do at this time of the year.
I’m dedicating my donation to diabetes friends who have been incredibly important to me over the last year. Peer support continues to be a cornerstone of my diabetes management – I can’t see that changing any time soon. And I can’t see a better way to say thank you to those who have helped me by supporting a charity that helps others with diabetes.
It’s been a while since my last diabetes in the wild encounter. It makes sense. I’ve barely left my house for the last 20 months and I’ve not really been frequenting the places where I would usually have those happenstance meetings – cafés and airports. Gosh, remember airports? Remember the queuing and the waiting and the frustrations and the delays and the cancellations? Anyway, I digress…
It shouldn’t surprise me that it was a café that provided the setting for my accidental encounter with another person with diabetes. I was working away, happy to not be in my house, even happier that someone kept bringing me outstanding caffeine. Happiest because I knew that every single other person sitting there was fully vaccinated.
I was doing the sort of work I do best in a café – editing. I get into a zone, concentrate on the task, and just read and edit in a super-efficient and fixated way. I don’t get distracted by anyone around me, and the noise becomes a reassuring beat that I work to. I completely block out anything on around me.
Including the fall rate alert on my Dexcom app. Anyone who uses Dexcom knows that this is a particularly urgent, loud and unforgiving wail. It cuts through absolutely everything. I absentmindedly nodded in the general direction of my phone when I heard it, but didn’t make a move as I was totally focused on rewriting a particularly sticky sentence. (Probably like every bloody sentence in this post…)
And so, I didn’t notice a woman sitting nearby get up from her chair and walk in my direction. I didn’t notice her stop right at my table. In fact, it wasn’t until she cleared her throat and said ‘Excuse me’ that I looked up, realising there was someone right there. She was fixing her mask behind their ears at the moment I looked up at her, my eyes focusing away from my MacBook. I blinked a few times and smiled, and then reached for my own mask before realising it was already on my face. I exaggerated my smile, so I was smiling with my eyes.
There was a slightly awkward moment as I waited, because, look, I’ve forgotten how to engage with people. I probably should have said ‘hi’, but I’ve really lost the art of chatting with people. How do conversations start? So, I was thankful when she introduced herself. And then she asked, ‘Are you okay? I heard your Dexcom a couple of times. I just wanted to check you are okay.’
And that was how I broke my streak of having conversations about diabetes with other people with diabetes I’ve never met before.
Turns out, I’ve missed it. Really, missed it.
We spoke for a while, sharing the usual things, comparing notes about which HCPs we see, and talking about which tech we are using. She is about to start looping, so I answered a heap of questions, remembering that I need to not be too evangelical and gushy about it. I toned down my ‘It’s the best thing I’ve ever done for my diabetes’ (because it is) by adding ‘But, of course it’s a learning curve and can be tricky.’
We told self-deprecating stories about how crappy our attitudes to diabetes have been at different periods. We shared our Covid-19 vaccination stories and compared when we’d be getting boosters. And we spoke about how we felt every time diabetes was mentioned in connection to Covid-19.
Through it all my Dexcom kept squealing and I ignored it because I just wanted to slurp up a diabetes conversation with someone in real life, where all we really had in common was diabetes. It felt like a therapy session, a confession, and catching up with a long-lost friend all in one fifteen-minute encounter.
When our conversation ended, she turned to return to her seat, and I settled back, searching for the sentence I’d been working on. But before I could do that, she turned back towards me and said, ‘I read your blog. I’ve seen you here before…well, used to see you here before Covid…and I wanted to say something. It’s really lovely knowing that there is someone like me who comes here.’
And then I cried. Because I remembered just what it is to connect. How real it feels. It’s why I started this blog in the first place – because I wanted to meet others just like me. Well over ten years of writing about diabetes, twenty years of diabetes advocacy, and that feeling of connecting never gets old.
Lots more diabetes in the wild stories on this blog post from earlier this year.
I shared this photo to Twitter the other day:
I couldn’t care less if there are diet books on bookshelves at bookshops. Clearly there is a buck to be made with the latest fad diet, and so, diet scammers gonna scam and publishers gonna publish.
What I do care about is the framing that health is limited to weight loss and dieting.
Living with diabetes has the potential to completely screw up the way food, weight and wellbeing coexist. My own disordered thinking has come from a multitude of different sources. I know that even before diabetes I had some pretty messed up ideas about weight loss and my own weight, but once diagnosed all bets were off and that thinking went haywire! I know it didn’t help when, in the days before diagnosis as I was feeling as though I was slowly dying, someone effusively told me how amazing I looked after having lost some weight that I really didn’t ‘need’ to lose. And look at that! A little weight bias in there already as I talk about ‘not ‘needing’ to lose weight’.
I remember that afternoon very clearly. It was Easter Sunday and my whole family was at my grandmother’s house. I’d had a blood test the morning before because I’d gone to my GP with a list of symptoms that these days I know to be ‘The 4 Ts’. (In hindsight, why she didn’t just do a urine check or, capillary blood check, I don’t know.) I was feeling awful and scared. I knew something was wrong, and suspected it was diabetes.
But there I was, literally slumped on the floor against the heater (at my grandmother’s feet) because it was the only place I could feel any warmth at all. Sitting opposite me was a family member who felt the need to tell me how amazing I looked because I’d dropped a few kilos. I could barely see her across the room because my vision was blurry, but hey, someone told me I looked skinny. Wonderful!
That road to further screwing up my thought processes about weight and diabetes was pretty rocky and I was on it. I learnt that thing that we know, but we don’t talk about anywhere enough routinely, and that is that high glucose levels equal weight loss equals compliments about losing weight. (We don’t talk about it because there’s not enough research, but also because in the past a lot of HCPs have gatekept discussions about it because they think that by talking about insulin omission or reduction for weight loss will make people do it. Sure. And sex education for school-aged kids is a bad thing because by NOT talking about sex, teenagers don’t have sex. End sarcasm font.)
It has taken years of working with psychologists to undo that damage – and the damage that diabetes has piled on. I employed simple measures such as stopping stepping on scales and using that measure as a way to determine how ‘good’ I was being. As social media became a part of everyday life, I curated my feeds to ensure I was not bombarded with photos that showed a body type that generally is only achievable when genetics and privilege line up. I learnt to not focus on my own weight and certainly not on other people’s weight, never commenting if someone changed shape. I did all I could to reframe how I felt about different foods, because demonising foods is part of diabetes management.
I was determined to parent in a way that didn’t plant in my daughter’s head the sorts of seeds that had sewn and grown whole crops in my own. While a noble ambition, I realise I was pretty naïve. Sure, we absolutely never talk weight at home, we never have trashy magazines in the house celebrating celebrities’ weight loss or criticising their weight gain. I’ve never uttered the words ‘I feel fat’ in front of my daughter even when I hate absolutely everything I put on my body. Food is never good or bad, and there is no moral judgement associated with what people eat. But the external messaging is relentless and it’s impossible to shield that from anyone. All I could do is provide shelter from it at home and hope for the best.
But despite doing all I can to change my way of thinking and changing my own attitudes and behaviours, it takes a lot of work…and I find myself slipping back into habits and not especially healthy ways of thinking very easily.
Which brings me to my favourite bookshop over the weekend and standing there in front of the health section. I was looking for something to do with health communications, or rather, the way that we frame life with a chronic health condition like diabetes. I wondered if there was anything that spoke not about ‘how to live with a chronic health condition’ but rather ‘how to think with a chronic health condition’. I didn’t want to read more about what to do to fix my body; I wanted to find out how to help focus my mind and love my body. But there was nothing. Nothing at all.
Instead, there were shelves and shelves of books about losing weight, dieting, fasting, ‘cleansing’ (don’t get me started) and then more on fad diets.
When I tweeted the photo, one of my favourite people on Twitter, Dr Emma Beckett (you should follow her for fab fashion and fantastic, fun food facts), mentioned that it is a similar story in the ‘health food’ aisles of the supermarket, where there seems to be a focus on calorie restriction.
How has the idea of being healthy been hijacked by weight loss and diets? How has the idea that restricting our food, limiting nutrients, and shrinking our bodies equates health?
How did we get so screwed up at the notion that thin means healthy; that health has a certain look? Or that dieting means virtue? How is it that when we see diabetes represented that it so often comes down to being about weight loss and controlling what we eat, as if that will solve all the issues that have to do with living with a chronic condition that seeps into every single aspect of our lives?
It takes nothing for those disordered thoughts that are so fucking destructive, thoughts that I have spent so long trying to control and manage and change, to come out from under the covers and start to roar at me. Diabetes success and ‘healthy with diabetes’ seems to have a look and that look is thin. (It’s also white and young.)
Health will never just be about what someone weighs. And yet, we keep perpetuating that myth. I guess that steering away from the health section of bookstores is selfcare for me now. Because as it stands, it just sends me into a massive spin of stress and thinking in a way that is anything but healthy.
A couple of crappy anxiety days have left me feeling a little spent and exhausted. Add to that some low-key diabetes burnout, and I’m wondering if I can somehow leave diabetes out for the upcoming hard rubbish collection in our neighbourhood.
The anxiety was mostly to do with a work thing yesterday which involved a live Q&A about type 2 diabetes remission. When I’m on my game, that sort of thing has me pumped! I know that the discussion will be lively and that there could be some contention in what we’re saying, and I thrive on robust debate.
But right now, I’m not feeling completely on my game. Burnout, lockdown and just feeling tired, combined with feeling a very long way away from friends and colleagues a lot of my work is with, has left me a little weary and downbeat. So instead of the fire I usually feel when I need to deal with something that could be a little controversial and provocative, I was dreading it.
A moment of light came after the live Q&A when I had a call from who wanted to speak with me about the new Type 2 Diabetes Remission Position Statement from Diabetes Australia. After watching, they decided to take the time to reach out to me and admit they were wrong about me. They thought I’d been dismissive and negative about the way they manage their diabetes, when in fact, it seemed I was the complete opposite of that. When I asked why they had thought that of me, they said, ‘You just seem so confident and assertive, and I mistook that for thinking you were really rigid in your beliefs about diabetes.’
It’s funny how we form impressions of people. Sometimes we can be spot on. Other times, not so much. I’ve been totally wrong about people in the diabetes community because once I’ve looked beyond the tweets, I see that there is far more to them than the soundbites that get all the attention.
When people tell me (or, more likely, subtweet) that they think everyone should think the way I do about diabetes, manage their diabetes in the same way, feel the same about the issues important to me or that I think I speak for others with diabetes, I’m genuinely confused. I’ve never said any of those things. The about me page on my blog states: ‘This blog does not provide medical information or advice. I write about my own experiences of living with diabetes but please don’t think that you should take on board what I’m doing and apply it to you. We’re all different and our diabetes varies. Significantly. Get thyself to an appropriately qualified healthcare professional to help yourself out with your own particular brand of diabetes.’
I throw the caveat “my diabetes, my rules” around like glitter and anytime I do speak about diabetes, I am very clear that I am but one person in a very, very large choir, and that the audience should make a point of listening to lots of those voices.
So, it is with no surprise at all that it seems that some corners of the LCHF world think that I completely and utterly condemn their chosen way of managing diabetes. What a lot of rubbish! I can only assume the reason they think that about me is because I have been pretty vocal about the way some in that community respond to others who have different ideas. I call out stigma and shaming, and I call out anyone saying that everyone should follow the same way of eating.
I stand by that. And I stand by it in all aspects of all types of diabetes. If anyone truly believes that there is one way and one way only to manage diabetes, they are very misguided.
In case I was feeling too pleased with myself after that phone call yesterday, I was dragged back down to earth with a shouty email (in ALL CAPS) demanding to know why I don’t advocate remission in type 2 diabetes. Sweetie, I don’t advocate anything other than the rights of people with diabetes to do what they want to manage and treat their diabetes in a way that works for them. I advocate choice. Choice is critical and my passion lies in ensuring that people are given choice.
I love my pump, I love LOOP, but I don’t reckon everyone should be on it. I don’t think everyone should do DAFNE or wear a Libre. I don’t think everyone should just follow what their doctors tell them to do. I don’t think everyone should be eating LCHF any more than I think everyone should be eating a vegetarian or Mediterranean diet. I wouldn’t try a vegan diet because the thought of no bacon makes me weep, but hey, if it works for you and you like it, can sustain it, can afford it and are happy doing it, high five!
Anyway, in a roundabout way, this post is to say that there is a new position statement about type 2 diabetes remission available and you can find it here if you’re interested.
And it’s also to say that forming opinions of people in the diabetes world is perfectly fine and we won’t all agree or love each other (and that’s fine too). I know I’ve formed opinions of people based off one tweet, or one encounter. It’s probably quite unfair on my part, and when I’ve re-engaged with some of those people, I’ve found that they have a lot more going on that just that one idea of them I had. I’m glad I did try again.
My anxiety is a little better today. I weathered yesterday’s storm and came out of it only mildly battered. I’ll call that a win.
DISCLOSURE
I work at Diabetes Australia. I was not involved in the writing of the position statement that was launched yesterday. I’m writing about it because it’s interesting and relevant to my diabetes today and yesterday.
I facilitated an event for Ascensia (disclosures at the end of this piece) last night/early morning and the crappy time was partly (mostly) my fault, because although I sacrificed the Aussies and suggested we draw the short straw in the time zone lottery, I forgot that daily saving would have kicked in for us meaning kick off time was 11pm and not 10pm. That may not seem much – I mean, what’s an hour? – but there is definitely a psychological barrier about doing work after midnight. (Anyway, I digress, and that paragraph has just about put me to sleep).
The reason for last night’s adventures after dark was a facilitating gig for Ascensia’s latest Diabetes Social Media Summit (DSMS). The thing I love about (and why I am so keen to be involved) in these Summits is because they have tacked some difficult topics that are often hidden away.
This one was no different in that we looked to address something that needs more attention – diabetes and women’s health. In my introduction, I wanted to make the point that diversity and inclusion is important when speaking about any aspect of diabetes, and that for us to be truly inclusive in a discussion about women and diabetes, we needed to hear from women who represent all corners of the diabetes world. I particularly referred to needing better representation from women in the LGBTQIA+ community.
The other thing that we had wanted to make sure that we didn’t focus too much on diabetes and pregnancy, because so often that is the only easily information about women’s health and diabetes that can be easily found (and saying that, there does seem to be a bias towards women with type 1 diabetes). Of course, understanding and being aware of how diabetes can impact on pregnancy is important, but it is certainly not the only issue that women with diabetes want or need to know about.
In fact, one of the discussion points was that for some women, pregnancy is not a topic they want discussed. There is the assumption that all women of childbearing age need information about having a healthy baby when that is not the truth. Contraception discussions do not necessarily equal an invitation for pre-pregnancy counselling, and there needs to be some sensitivity in how healthcare professionals in particular raise the topic, and rid themselves of the belief that all women want to have kids.
There is so much more to talk about. So, so much more.
We touched on how much our cycles can impact and influence glucose levels (and a very amusing tangent where we joked about how when we see monthly perfect glucose patterns, they clearly don’t belong to people who menstruate – or people who understand the absolute havoc hormones can wreak on CGM traces).
We spoke about birth control and how the OCP can also make a significant difference to glucose levels, yet many of us were not told about that.
Of course, we spoke of menopause, but only briefly; briefly not because it’s not an important topic (or a super relevant topic), but because we just got caught up talking about other things (and perhaps my facilitating skills weren’t as tight as usual).
And we spoke about how cultural gender issues need to be shown and understood so that the experience of privileged white women with diabetes are not seen as the only experiences.
For me, the central message that I heard time and time and time again was that topics about the very things that occupy a lot of the headspace of women with diabetes are simply not discussed with us. And there is little research to inform our decision making, or even to help us form the right questions to ask. At best, we are given some piss-weak explanation that points a finger at diabetes being to blame. At worst, we are dismissed.
I do wonder when research and diabetes education will catch up. I know that there are some wonderful researchers doing some important work here, but we are so far from normalising discussions about women’s health and diabetes as part of our typical healthcare routines. We’re miles away from getting rid of the preconceived and outdated ideas about women’s sexual health.
Beyond discussing different women’s health matters, we also spoke about just how these discussions fit in the diabetes community. This was a completely unplanned turn for the summit (it was not a topic on the agenda), but I’m glad we had it and I’m glad that I am writing about it. Because of the nature of women’s health, sex and diabetes, there is a lot of taboo, shame, fear, and vulnerability. I know that some of the rawest and most open I’ve been in my writing has been when I have been dealing with moments in my life that were so, so hard and I was so, so vulnerable. When I look back, I sometimes wonder if I was right to hit publish after writing, and perhaps I should have tucked away the paragraphs until I was feeling stronger. Or not published at all. While I have been told that my words have provided some comfort to others facing similar challenges, it left my gaping, open wounds very public and visible.
After writing about miscarriages, I’ve been called selfish for wanting to have a child and potentially passing on diabetes to them. Writing about my fears of passing on diabetes to my child I’ve been told that perhaps I should have thought of that before I got pregnant. Speaking about body image concerns, I’ve been told to toughen up and stop being so shallow. I’ve seen and watched other women with diabetes experience the same thing, and I feel their pain as I watch them navigate the muddy, and sometimes distressing waters.
We spoke about how women are treated in the diabetes community, particularly when we write about struggles and difficulties, and the words and terms that are thrown our way when we dare to share how we are feeling. The ‘angry woman’ trope that I’ve written about before has been directed to many others too.
These discussions are real, and they are necessary. I am one of the loudest, most vocal supporters of peer support and have spoken about the value and importance of diabetes peer support and the online community on stages literally around the globe. Peer support saved me at times when I thought I was broken beyond repair. But it also can be a source of pain and bullying and nasty confrontations, and perhaps we need to have those discussions too so that when someone decides that they are ready to share and be especially vulnerable that they look out for themselves as much as looking out for the community. It’s all very well to want to share to connect and help with our own and others’ isolation but leaving ourselves exposed isn’t easy.
One of the attendees last night reminded us that we could share with selected friends in the community, still allowing for that peer support but under the protection of a safe space. It’s interesting, because until maybe two years ago, I had never experienced how unsafe the community can be to individuals. I’d not felt that before. While I still share a lot, these days I’m more inclined to turn to those trusted friends in the DOC who I know will be honest, open, but never nasty or judgemental.
Online spaces are different for women than they are for men. The misogyny that is inbuilt to even those that we think are allies comes out, often surprising us, as throwaway comments about a woman’s age or appearance. It is ever present in the diabetes community too. I’ve rolled my eyes as some of the most vocal advocates who have loudly aligned themselves as being supporters of women, revert to type, with snide sexist commentary. I’ve seen people in the DOC referred to as ‘angry old women’ for daring to be furious, older than 25 and a woman! I roll my eyes now when I know someone has called me angry. I also know that they’ve just announced to everyone how threatened they are of women who dare to not go quietly, and how they expect us to remain in our place!
There was so much more that we could have spoken about last night. We didn’t touch on body image and disordered eating (and yes, I know that this is not the domain of women only, but this is about us!), we didn’t talk about sex all that much either, even though it is often highlighted as an issue that needs more coverage and information. Again, it’s not because they are not important topics; it was because the fluid conversation took a feminist turn that highlighted a highly biased social and healthcare environment where it is seen as perfectly fine that the needs, and concerns of fifty percent of the diabetes community are barely considered.
Perhaps if we had a more feminist approach to, and model of, healthcare, the misogyny that has meant the topics important to us have not been researched, and are not discussed, could be eliminated. And women with diabetes would not be feeling ignored.
Disclosure
I was invited by Ascensia to help plan the agenda for #DSMSWomen and facilitate the discussion. I have been paid an honorarium for my time.
Diabetogenic 