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Stress impacts diabetes in different ways. And of course, everyone’s response is going to be different. 

Before Loop (which now feels like almost a lifetime ago), the effect of stress on my glucose levels was tricky and unpredictable. At times, it would make me high. Other times, I’d be in Hypotown (the town no one wants to visit) for hours, without any respite. The clever Loop algorithm tidies most of that up for me these days. 

But when it comes to diabetes, stress doesn’t only impact what I see on my CGM trace. It’s far more than that. Loop can only do so much… Insulin automation doesn’t mean diabetes automation. And it certainly doesn’t mean life automation. 

Let me talk about how it’s affected things in the last couple of months …

To some, it might look as though I have become lazy about my diabetes management. I have run out of insulin in my pump more times than I care to admit, scrambling to find my spares bag to refill the canula. I ignore the alerts, silencing alarms and putting the task that needs to be done out of mind. 

I’ve let the batteries on my pump and RileyLink wear almost right down. In fact, the batteries have got to the point where they are so crucially low Loop has stopped working. Even the Red Loop Of Doom on my Loop app hasn’t been enough to swing me into action. 

I’ve almost run out of insulin. I never do this. Ever. I have a system that works for ordering new scripts to make sure that there is always at least two weeks’ supply, and then back up plans for my back up plans. And yet, there I was, staring down the last few drops of insulin in a penfill. I don’t use insulin pens. I use vials. But I’d run out of vials and was using a penfill that I have for absolute emergencies. 

This had become an emergency. 

Same goes for pump consumables. I was reduced to searching the depths of my diabetes cupboard and discarded handbags looking for an infusion set, desperately hoping that there was at least one, somewhere, that would do the trick before I had to knock on the door of my neighbour, asking her to tide me over.

This is one part of diabetes burnout for me – the way that I deal with my diabetes tasks. It’s not feelings of resentment that I must do those tasks; it’s not feeling distressed that I must do them. It’s not even feeling a paralysis about doing them. It’s simply not caring enough about them to take the time and energy to engage my brain and actually do it. 

I know that when I am stressed, something’s gotta give, and for me, that’s always been doing diabetes. 

I cannot tell you how much having automated insulin delivery sweeps up a lot of it. Forgotten boluses get sorted by Loop. Sure, it may take a little extra time and mean a bit of extra time above my upper range limit, but if I don’t engage, Loop will bring me back in range soon enough. 

The low-grade nausea I’ve been living with for the last month means that eating is sometimes difficult, but I don’t even need to think about what that means for glucose levels, because Loop mostly does it for me. 

And sleep! Sleep the gift that Loop keeps giving has been interrupted, not by diabetes, but by waking stressed. Or, as has happened twice in the last week, with a splitting headache, so painful that the throbbing has woken me from a deep sleep. Pre-Loop, sleep disturbances would wreak havoc with my glucose levels (often because most of the time those disturbances were because of my glucose levels). But now, as I see the upward spike start because I’ve been woken in the middle of the night and glucose is being dumped because apparently, I’m now up and awake, Loop kicks in with an ‘I don’t think so’, and that spike is shut down quickly.

But the nausea is debilitating physically. And being woken in the middle of the night is exhausting. And the stress is leaving me feel a little hopeless all around, to be honest. Teary, emotional, tired. And burnt out. 

Many years ago, after a couple of periods of intense burnout, I did a smart thing and found a psychologist to help me. Together, we learnt to identify the triggers that precipitated burnout. This has truly become one of the most powerful tools in my diabetes emotional wellbeing arsenal, because learning when I am heading down the slippery slope of burnout, and realising it’s coming, has meant that I’ve been able to address it before I get so deep into that dark space, it becomes challenging to come back from. 

So, right now, I know this is happening. I can feel the stress and the physical manifestation of it, and I can see how it is influencing my diabetes. Today, I spoke with my psychologist – in a way waving a white flag of surrender knowing that I need someone else to come in and help me through this, because I can’t do it myself. 

The win is that I’ve seen it and I’ve recognised it. The win is I’m seeking help. The win is that I’ve caught it before I’m plunging to dark depths (I hope). 

It’s not a win that I’m feeling this way. It’s not a win that this level of stress has started to affect so much, including my diabetes. It’s definitely not a win that I’ve reached the point where I’m staring down the path to diabetes burnout despite the reason being un-diabetes-related stress. 

But that’s how it goes. Diabetes becomes part of it. Of course it does. Because diabetes is always part of it. Always part of everything. Always hand in hand with whatever else is going on. Stress and diabetes leading to burnout. One of the few equations in diabetes that I can count on.

I saw this image by illustrator Alessandra Olanow and thought it perfectly summed up what is going on inside my head right now.
(Click to be taken to Instagram for details.)

This morning on ABC Melbourne’s Conversation Hour, the topic was how people are using the internet to self-diagnose mental health conditions using TikTok. Apparently, HCPs are seeing more people claiming to have undiagnosed mental health conditions based on videos they’ve seen on the app. 

The question being posed in the discussion was this: Are Dr Google and TikTok helping raise awareness of mental health conditions or misleading millions of viewers?

Oh’, I thought. ‘We’re having this conversation. AGAIN’, as the hosts were engaged in a bit of pearl clutching and assumption-making. I couldn’t help but roll my eyes at the suspicion and cynicism I was hearing. Sure. It might be a different health condition and a different social media platform, but haven’t we been doing this for years? For DECADES?

Yes. Yes, we have. 

The gist of the discussion today was questioning just how safe and sensible it is for people to use TikTok videos as a basis of self-diagnosing ADHD and other mental health conditions. The people in these videos are sharing their experiences and their symptoms, and others are recognising what they see. As a result, increasing numbers of people are heading off to their GP or a psychologist in the belief they have ADHD. Are these videos a good thing? Or is it misleading and dangerous? 

There were stories of lived experience – people sharing how they had seen something on social media and used that as the springboard to find answers to health questions they have. And others explaining how difficult it had been to get help in the first place, often after having been dismissed for years. 

Social media doesn’t exist in a vacuum. Even if someone does self-diagnose – correctly or incorrectly – they still need to see a healthcare professional to find the right treatment and care. That’s certainly the case when it comes to diabetes. So much of what I have learnt about different treatments or devices has come directly from the community, but in almost all cases, I then need to see a HCP to actually access that new therapy. I can’t write myself a prescription if I want to try a new insulin. In most cases, new tech also needs a HCP sign off, especially if you want to access subsidy programs. 

I’ve come to learn that a good healthcare professional is one who considers Dr Google a colleague rather than a threat. Those who grimace and dismiss someone who walks into their office with the announcement ‘I’ve been googling’ is really just admitting that they believe they are still the oracle of all information; information to be disseminated when they decide it’s time and in the way they believe is right for the individual. 

We have moved on from that. 

And surely we have moved on from the idea that social media is evil and highly distrustful. I’ve been writing and speaking about this for over ten years. In fact, in 2013, I wrote this in a post‘The diabetes social media world does not need to be scary and regarded with suspicion. The role of HCPs is not under threat because PWD are using social media – that’s not what it’s for. It is just the 2.0 version of peer support.’

I so wished that the discussion I listened to this morning had started with a different framing. Instead of highlighting how social media in healthcare could be problematic, they could have emphasised just how empowering and positive it can be for people to recognise themselves on social media. How seeing those stories and hearing those experiences normalise what we see in ourselves, and how they can help us find the right words for what it is that we have been thinking and direction for what to do next. 

It’s not social media and online health discussions that are going to make HCPs redundant. Rather, it’s their refusal to understand just how important and useful these sorts of communications and communities can be. In a post in2016 I referred to it all as a ‘modern day kitchen table’. Sure that kitchen table now looks like a TikTok video, a Twitter discussion or an Instagram reel. But learning from others living similar lives isn’t new. And neither is searching for answers using something like Dr Google. It’s sustaining. And for so many, essential.

Diabetes and menopause – there are two things that have an image problem! Diabetes’ image problem has been discussed a bazillion times on here and is well documented by others. 

And menopause? Menopause is middle-aged women; women who are past their prime and ready to settle down with a pair of slippers and a good book. Women who are a hot mess rather than just hot. Angry old women who are, at best, easily ignored, at worst, are given labels such as the incredibly sexist and derogatory ‘Karen’ thrown at us, especially if we dare demand attention for issues that are important to us. Oh, and we are invisible, apparently.  

Well, fuck that. I am none of those things. I am as loud and out there and determined as I have always been. Sure, I like the idea of settling in for the night with a good book and a cup of tea, but I’ve been like that since I was in my twenties. And the anger isn’t new. Being radicalised as a kid does that to you, and I fairly, squarely, and gratefully credit my mother for it. 

Turns out that my attention now is being turned to an issue that is one of too little research, too little attention, and too little available information that is relevant, evidence-based and engaging. And that is diabetes and menopause, and perimenopause. 

Yes, I’ve written before about before. Missed it? Well, here you go: This time; this time and this time.

If you jump on Twitter now and search the words ‘diabetes’ and ‘menopause’ you’ll find a number of discussions which have been started by people with diabetes who are desperately looking for information to do with the intersection of these two topics. As well as information, people are asking to be pointed to examples of others who have been through it and are willing to share their stories. At the recent #docday° event, the inimitable Dawn Adams from IRDOC gave a rousing talk about why we need to focus more on this issue. (Follow Dawn on Twitter here.)

Here’s the thing: I still get diabetes and pregnancy reminders from my HCPs despite being 48 years old and very clear that having a baby right now (or ever again) is not on my to-do list. Been there, done that, bought the t-shirt and have an almost fully formed adult to show for it!

And yet despite that, I still get reminders about how important it is to plan for a pregnancy, take birth control to prevent it, and make sure that I take folate. Cool. That’s really important information. For women planning to get pregnant (and the birth control bit is important for women looking to avoid it).

But more relevant; more targeted; more person-centred for me is information about perimenopause and menopause. 

Just over twenty years ago, when I was looking for information about diabetes and pregnancy, there wasn’t a heap of it. There was, however, a lot of research about it. What we really needed were resources for people with diabetes who wanted information that didn’t look as though it had been written and illustrated in the 1980s. We wanted the evidence-based materials that didn’t scare us. And so, working with other women with diabetes who were the same age as me, and looking for the same sort of information, we made it happen. The diary I published online when I was pregnant added to other stories that were already there. It was hugely reassuring to know that I could find others who were sharing stories that either mirrored my own or suggested the path that mine might follow. 

These days, it’s super easy to find stories about pregnancy and diabetes. You don’t need to search too hard to find and follow diabetes pregnancies on Instagram, from pregnancy announcements through to delivery announcements and every twinge, craving and diabetes concern in between.

Less so menopause. Look, I get it. What’s the cute, good news story here? With pregnancy stories, there is a baby at the end – a gorgeous, cooing baby! There is nothing like that with menopause. Despite that, I think there are stories to tell and share. And a community to provide support and lived experience advice. 

Right now, there is a chorus of people in the diabetes community who are calling out for this information and talking about the topic. I’m willing to bet that a lot of us were the ones who, twenty years ago, were calling out for decent diabetes and pregnancy info. 

I’m not a clinician and I’m not a researcher. I don’t write grants for studies about menopause and diabetes that suddenly put this topic on the research agenda and start to help grow an evidence base. But what I can do is generate discussion and create a space for people to share their stories, or ask for information in the hope that others will answer the call.

The ‘The Diabetes Menopause Project’ isn’t really a thing. It’s a community cry to generate that discussion and some lived experience content. There are some great pieces already out there and I can’t tell you how many times I’ve pointed people to those blog posts and articles. But there needs to be more, and they need to be easier to find. 

And so, to start with, here is what I do know is out there. If I’ve missed something, please let me know and I’ll add to it. At least then there is an easy one stop place to find the limited information that is out there. Get in touch if you have something to share. 

The Big M – More Taboo Subjects, from Anne Cooper. 

Type 1 and the Big-M – a five-part series from Sarah Gatward about her personal experiences of type 1 diabetes and menopause from Sarah Gatward

Managing Menopause and Type 1 Diabetes – also from Sarah Garward, published by JDRF-UK

Menopause + Type 1 Diabetes – Ginger Viera’s writing for Beyond T1

I hosted a Facebook live with endocrinologist, Dr Sarah Price where, amongst other issues, we discussed diabetes and menopause

Research!! This journal article looks at the age menopause occurs in people with type 1 diabetes 

I’ve always thought that being pushed out of my comfort zone is a good thing. There’s something to be said about feeling uncomfortable and being stretched outside the boundaries of familiarity. 

And so, with that in mind, I jumped on a plane and flew to Barcelona for ATTD. If you read my last post, you’ll know it was nowhere near as easy and flippant as that last sentence sounds. 

A lot of the stresses I had before I left ended up amounting to nothing. There were no endless queues at the airport, or crowds who didn’t understand keeping 1.5 metres apart. Almost everyone was wearing a mask. Security was even more of a breeze than usual (apparently laptops and other devices don’t need to be removed from carry-on luggage anymore), and, requesting a pat down rather than walking through the full body scanner was met with a nod and a smile.

Everyone wore masks boarding the plane and most seemed to leave them on throughout the flight. This isn’t something to treat lightly. The first flight alone was almost 15 hours long! My mask was removed only while drinking and eating, staying on snugly while I slept. 

While there were no formal requirements for a supervised COVID test to enter Spain or return to Australia, my daily tests did cause 15 mins of countdown anxiety. One evening, someone messaged me to tell me that she had tested positive. We’d had a breakfast meeting the previous morning. I calmed my initial response (which was to freak out and burst into tears) by remembering that we’d all been masked up apart from the minutes we were eating.

When I arrived in Barcelona, I had been cautioned of convoluted arrival procedures and extra queues to check health and vaccination status. Before leaving, I’d had warnings and reminders from the airline and friends already there to make sure I’d completed my online Spain Travel Pass because the QR code would be needed. Except, it wasn’t. Passport control took under than 90 seconds. And my code wouldn’t scan for the woman checking my pass. ‘Where are you from,’ she asked me. When I said Australia, she laughed and told me just to go get my bag. (Clearly, she wasn’t up to date with our COVID numbers…)

Luckily, the people I spent most of my time with were all on the same page as me when it came to masking. We were not the norm. Most people were not masked up. I realised that when I walked into a hotel restaurant to meet someone a couple of hours after I arrived, and again as I walked into the conference centre on the Wednesday afternoon. As I stood on the stage to welcome everyone to the #dedoc° symposium, I was grateful to be greeted by a sea of masks with fewer than ten people in the packed crowd choosing to not wear one. And a couple of them searched in their bags for one after I and first speaker, Dana Lewis, thanked people for masking up. 

I have to say it did surprise me to see so few healthcare professionals wearing masks, and eagerly reaching out to hug or shake hands when we met. I actually was okay with giving people I know a hug, but we always asked first. I adopted a weird kind of hopping around to avoid people I don’t know too well as they approached, instead extending my elbow. 

I went into last week with a very clear idea of how I was going to, at all costs, avoid people. I’ve held tightly onto health measures (masking, distance, lots of hand washing, meeting people outdoors) since the pandemic began, and there was no way I was going to be partying like it was Feb 2020 just because I was back in Spain. 

But there was a moment that I did throw a little caution to the wind. The evening I arrived, after my first meeting, I got in the elevator to the rooftop of the hotel where I was staying. It was the same place all the #dedoc° voices were, and they were having an informal meet up on the roof. I walked out, and a few of them – the ones I know well – screamed and charged at me. And instead of freezing and freaking out, I teared up and was happy to just be enveloped by them all. I was wearing a mask and, in that moment, that as enough. 

Since I have returned home, I’ve been asked dozens of times what it’s like travelling and being at a conference again and how I coped. The answer isn’t straight forward. 

Travelling again was terrifying. I didn’t enjoy being in transit at all. I struggled with there being so many people around me. And I was uncomfortable with the unpredictability of the whole situation. But I focused on the bits I could control and did my best to just deal with it. 

Being at a face-to-face diabetes conference was in equal measure exhilarating and difficult. Being able to have in real life conversations with people about their advocacy and how they have been going is different to messaging or Zooming – it just is. Bumping into people in conference centre hallways starts conversations that absolutely wouldn’t have happened otherwise. And it’s those conversations that often lead to collaborations and new projects. I predicted in my last post that the muscle memory of a real-life conference would return without much effort, and I was right. 

The equation for me is this: the good outweighed the bad. The moments of joy and delight dwarfed the moments of terror. The feeling of being part of something – that truly global diabetes community of truly incredible diabetes advocates and healthcare professionals and researchers – returned with a fierceness I wasn’t expecting. I felt at home and where I belonged, and the moments of anxiety – sometimes almost paralysing – were overcome by knowing that. And the peer support was immense. I didn’t realise just how much I needed that contact again.

I’m not going to be rushing back to the same conference and travel schedule I had built in 2019 – it’s not sustainable in so many ways. And there is a lot of risk assessment going on. I won’t be at ADA this year, but EASD is on the cards. Carefully chosen meetings with clear goals and plans are worthwhile.

The world is definitely a different place. But within those differences is the comfort of knowing that the diabetes world – the diabetes advocacy community – has absolutely not stopped doing what it does best. As I stood in corridors speaking with people and plotting and planning, or took the stage to chair a session, or caught up with people after hours on rooftops, I realised that it’s going to take a lot more than a global pandemic to stop the passion and dedication and determination of those who have one thing in mind and one thing in common: improving lives of people with diabetes.

DISCLOSURE

My flights and accommodation have been covered by #dedoc°, where I have been an advisor for a number of years, and am no working with them as Head of Advocacy. 

Thanks to ATTD for providing me with a press pass to attend the conference.

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. 

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. 

Do your diabetes appointments take on an eerily familiar routine? When I was first diagnosed, each appointment would open with the words ‘Let me see your book’. My endo was referring to my BGL record, an oblong-shaped book that I was meant to diligently record my minimum of four daily BGL checks, what I ate, what I thought, who I’d prayed to, what TV shows I’d watched and how much I exercised. 

I did that for about the first two and a half months, I mean weeks, okay, days and after that the novelty wore off and I stopped.

I’m not ashamed to admit that I did that thing that pretty much every single person with diabetes does at one point or another – I made up stuff. I was especially creative, making sure I used different coloured pens and splotched coffee stains across some of the pages here and there, little blood speckles for proof of bleeding fingers, and, for a particularly authentic take, OJ, to reflect the made-up numbers that suggested I’d been having a few lows. 

I’d show those creative as fuck pages – honestly, they were works of art – when requested, roll my sleeve up for a BP cuff to be attached, and step on the scales for my weight to be scrutinised. Simply because I was told that was what these appointments should look like, and I knew no better. 

And then, I’d walk out of those appointments either frustrated, because I’d not talked about anything important to me; in tears, because I’d been told off because my A1c was out of range; furious, because I hated diabetes and simply wasn’t getting a chance to say that. And anxious, because looking at the number of kilograms I weighed has always made me feel anxious. 

The numbers in my book, on the BP machine or the scales meant nothing to me in terms of what was important in my diabetes life. They stressed me out, they made me feel sad and hopeless, and they reduced me to a bunch of metrics that did not in any way reflect the troubles I was having just trying to do diabetes. 

These days, not a single data point is shared or collected unless I say so. I choose when to get my A1c done; I choose when to share CGM data; I choose to get my BP done, something I choose to do at every appointment.

I choose to not step on the scales. 

I don’t know what I weigh. I might have a general idea, but it’s an estimation. I don’t weigh myself at home, and I don’t weigh myself at the doctor’s office. I think the last time I stepped on a set of scales was in January 2014 before I had cataract surgery and that was because the anaesthetist explained that it was needed to ensure the correct dose of sleepy drugs were given so I wouldn’t wake up mid scalpel in my eye.  Excellent motivator, Dr Sleep, excellent motivator. 

Last month, I tweeted that PWD do not need to step on the scales at diabetes appointments unless they want to, and that it was okay to ask for why they were being asked to do so.

There were comments about how refusing to be weighed (or refusing anything, for that matter) can be interpreted. I’ve seen that happen. Language matters, and there are labels attributed to people who don’t simply follow the instructions of their HCP. We could get called non-compliant for not compliantly stepping on the scales and compliantly being weighed and then compliantly dealing with the response from our healthcare professional and compliantly engaging in a discussion about it. Or it can be documented as ‘refusal to participate’ which makes us sound wilfully recalcitrant and disobedient. It’s what you’d expect to see on a school report card next to a student who doesn’t want to sing during choir practise or participate in groups sports. 

What surprised me (although perhaps it shouldn’t) was the number of people who replied to that tweet saying they didn’t realise they could say no. it seems that we have a long way to go before we truly find ourselves enjoying real person-centred care.

Being weighed comes with concerns for a lot of people, and people with diabetes often have layers of extra concerns thanks to the intermingling of diabetes and weight. Disordered eating behaviours and eating disorders are more common in people with diabetes. Weight is one of those things that determines just how ‘good’ we are being. For many of us, weight is inextricably linked with every single part of our diabetes existence. My story is that of many – I lost weight before diagnosis and people commented on it favourably, even though I was a healthy weight beforehand. This reinforced that reduced weight = good girl, and that was my introduction to living with diabetes. 

From there, it’s the reality of diabetes: insulin can, for some, mean weight gain, high glucose levels often result in weight loss, changes to therapy and different drugs affect our weight – it’s no wonder that many, many of us have very fraught feelings when it comes to weight and the condition we live with. Stepping on the scales brings that to the fore every three months (or however frequently we have a diabetes healthcare appointment). 

Is it always necessary, or is it more of a routine thing that has just become part and parcel of diabetes care? And are people routinely given the option to opt out, or is there the assumption that we’ll happily (compliantly!) jump on the scales and just deal with whatever we see on the read out and the ensuing conversation? And if we say no, will that be respected – and accepted – without question? Perhaps another positive outcome is that it could encourage dialogue about why we feel that way and start and exploration if there is something that can be done?

It shouldn’t be seen as an act of defiance to say no, especially when what we are saying no to comes with a whole host of different emotions – some of them quite negative. Actually, it doesn’t matter if there are negative connotations or not. We should not be forced to do something as part of our diabetes care that does not make sense to us or meet our needs. When we talk about centring us in our care, surely that means we decide, without fearing the response from our HCPs, what we want to do. Having a checklist of things we are expected to do is not centring us or providing us the way forward to get what we want. 

How do we go about making that happen?

Yesterday, the Australian vaccine rollout was expanded to include children. This follows the TGA approving the use of the Pfizer COVID-19 vaccine for children in the 12 – 15 year age group. ATAGI responded by including children with diabetes in that age group into Phase 1B, meaning they are eligible right now for a jab (provided, of course, they can find one…!).

Already I’m seeing in diabetes online discussions some parents of kids with type 1 diabetes saying their child will not be getting the vaccine, stating that the reason for that decision is because their type 1 diagnosis came shortly after one of their childhood vaccines.

And so it seems a good time to revisit this post that I wrote back in 2017. It has a very long title that could have been much more simply: correlation ≠ causation.

It is understandable to want to find a reason for a health issue. Being able to blame something means that we can, perhaps, stop blaming ourselves. I imagine that for parents kids with diabetes that desire to find something – anything – to point to would come as somewhat of a relief. But there is absolutely no evidence to suggest that vaccines are that reason.

Unfortunately, the idea that vaccines are the root of all evil and cause everything under the sun is a myth that is perpetuated over and over in antivax groups; groups where science, evidence and logic goes to die. Vaccines save lives and they are safe. Anyone who says otherwise is lying.

My sixteen year old is not in a priority group and cannot be vaccinated just yet, but she is ready to go as soon as her phase has the green light. All the adults nearest and dearest to her – her parents, grandparents, aunts and uncle, friends’ parents – are fully vaccinated now, and she knows what a privilege it is to be in that situation. She understands that with that privilege comes responsibility to do what you can to protect vulnerable cohorts in the community. And she also understands that vaccines are safe and they save lives.

If you are feeling unsure about getting a COVID vaccine – for you or your child – please speak with your GP. Don’t listen to someone in a Facebook group. And that may come as a surprise to anyone who knows how important I consider peer support and learning from others in our community, but to them I say this: I listen to and learn from people in the diabetes community because they don’t suggest anti-science approaches. They talk about support, and provide tips and tricks for living with diabetes. If anyone tells me to ignore doctors (because all they care about is getting rich), or to stop taking my insulin (because there is a natural supplement that will do the trick), I would block them as quickly as I could. Science works. Science is why people with diabetes are alive today. Science is why we have vaccines. Trust science. THAT’S what makes sense.

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In the next couple of weeks, our kid gets to line up for her next round of immunisations. At twelve years of age, that means that she can look forward to chickenpox and Diphtheria-Tetanus-Pertussis boosters, and a three-dose course of the HPV vaccine.

When the consent form was sent home, she begrudgingly pulled it out of her school bag and handed it to me. ‘I have to be immunised,’ she said employing the same facial expressions reserved for Brussels sprouts.

She took one look at me and then, slightly sheepishly, said, ‘I don’t get to complain about it, do I?’

Nope,’ I said to her. ‘You don’t get to complain about needles because…well because…suck it up princess. No sympathy about needles from your mean mamma! And you have to be vaccinated because that’s what we do. Immunisation is safe and is a really good way to stop the spread of infectious diseases that not too long ago people died from. And herd immunity only works if…

‘….if most people are immunised so diseases are not spread,’ she cut me off, finishing my sentence. I nodded at her proudly, signed the form and handed it back to her. ‘In your bag. Be grateful that you are being vaccinated. It’s a gift.’ (She mumbled something about it being a crappy gift, and that it would be better if she got a Readings gift voucher instead, but I ignored that.)

Over the weekend, the vaccination debate was fired up again with One Nationidiot leader, Pauline Hanson, sharing her half-brained thoughts on the issue.

I hate that I am even writing about Pauling Hanson. I despise what she stands for. Her unenlightened, racist, xenophobic, mean, ill-informed rhetoric, which is somehow interpreted as ‘she just says what many of us are thinking’, is disgusting. But her latest remarks go to show, once again, what an ignorant and dangerous fool she is.

Her comments coincided with a discussion on a type 1 diabetes Facebook page about vaccinations preceding T1D. Thankfully, smart people reminded anyone suggesting that their diabetes was a direct result of a recent vaccination that correlation does not equal causation.

I get really anxious when there is discussion about vaccinations, because the idea that this is something that can and should be debated is dangerous. There is no evidence to suggest that vaccines cause diabetes (or autism or anything else). There is, however, a lot of evidence to show that they do a shed-load of good. And if you don’t believe me, ask yourself how many cases of polio you’ve seen lately. People of my parents’ generation seemed to all know kids and adults with polio and talk about just how debilitating a condition it was. And they know first-hand of children who died of diseases such as measles or whooping cough.

This is not an ‘I have my opinion, you have yours. Let’s agree to disagree’ issue. It is, in fact, very black and white.

A number of people in the Facebook conversation commented that their (or their child’s) diagnosis coincided with a recent vaccination. But here’s the thing: type 1 diabetes doesn’t just happen. We know that it is a long and slow process.

Click for reference

What this shows is that even if onset of diabetes occurs at (correlates with) the time of a vaccination, it cannot possibly be the cause.

When we have people in the public sphere coming out and saying irresponsible things about vaccinations, it is damaging. People will listen to Pauline Hanson rather than listen to a doctor or a researcher with decades of experience, mountains of evidence and bucket-loads (technical term) of science to support their position.

The idea that ‘everyone should do their own research’ is flawed because there is far too much pseudo-science rubbish out there and sometimes it’s hard to work out what is a relevant and respectable source and what is gobbledygook (highly technical term).

Plus, those trying to refute the benefit of vaccinations employ the age-old tactic of conspiracy theories to have people who are not particularly well informed to start to question real experts. If you have ever heard anyone suggesting: government is in the pockets of Big Pharma / the aliens are controlling us / if we just ate well and danced in the sunshine / any other hare-brained suggestion, run – don’t walk – away from them. And don’t look back.

I have been thinking about this a lot in the last couple of days. I have what I describe as an irrational fear that my kid is going to develop diabetes. It keeps me awake at night, makes me burst into tears at time and scares me like nothing else. If I, for a second, thought for just a tiny second that vaccinating my daughter increased her chances of developing diabetes, she would be unvaccinated. If I thought there was any truth at all in the rubbish that vaccines cause diabetes, I wouldn’t have let her anywhere near a vaccination needle.

But there is no evidence to support that. None at all.

I can’t believe I wrote this piece almost seven years ago. I had turned 40 the year before and as often happens around the occasion of ‘big’ birthdays, I’d started to think about just what getting older means. I didn’t seem to have any feelings of regret or stress that I was ageing though, I was fully embracing just where I was going, the wisdom that I felt, and the absolute excitement of what was coming next. Seven years later, I can see that I was right to feel that way.

At the moment, I’m spending time thinking and reading about menopause and I’m lost in language that is tied up with this ‘next stage’. There seems to be so much loss, regret, and looking back, and feeling scared about what people are losing and leaving behind as the next stage of life hits. But I don’t feel that way. I feel that I can look back with pride and achievement and happiness and pain and love and hurt and longing. There are things I wish I had done differently, but nothing I wish I hadn’t done. I don’t want do-overs. Looking ahead, there is just more to look forward to, possibilities that I have no idea about yet.

This year, with so much about insulin’s centenary, thinking about getting older seems more poignant. Because a short century ago, diabetes was a death sentence. Ageing was only something we could even dream about. What a privilege to wear my age in years alongside my age in diabetes!

And so today, I’m sharing these words from 14 October 2014 (with a few edits) because they still ring true for me. They still feel real. And in seven years time, I’m hoping I revisit this post again, and feel the same way.

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I really should be careful what I read and where I read it! The other day I sat at a gate lounge at Sydney Airport crying as I read an incredibly candid piece on the Huffington Post that inexplicably told my story so honestly and accurately that I wondered if I had written it and not remembered.

And then I read this piece by Rebecca Sparrow and again, floods of tears as I nodded at everything she wrote.

I remember one day sitting with a group of other women all around the same age and we were speaking about skin care products (and then we giggled about boys, plaited each other’s hair and painted our toe nails). I was the only one who had not been using so-called anti-ageing products for a number of years. Because that’s the thing – we’re meant to be anti-ageing and do things to turn back the clock.

I am forty years old. (EDIT: forty-seven) This is not something I feel the need to hide nor be ashamed of. I celebrated last year with a week of parties and lovely gifts. I wanted to celebrate this milestone – just as I do every milestone. Next month, I turn 41 and have every intention of celebrating that too.

Rebecca Sparrow writes that ageing and getting older is a privilege as she tells the story of a friend of hers who, at 22 years has been diagnosed with terminal cancer. This young woman is not going to be afforded the opportunity to age and get wrinkly and turn grey. She is going to die at an age where most of us feel completely immortal.

Ageing is a privilege – I understand that more and more every day. With our daughter growing up – she’s going to be 10 next month – I can easily measure time. We see how she has changed and how, with each passing month, she is becoming an incredible young girl we are so proud of. And we are so lucky to be able to watch this.

I am over the idea that ageing is something that we should hide from and do everything in our power to avoid. I am forty years old. I look older than I did when I was 17 and doing year 12, or when I was 25, or when I was 30 and pregnant, or even than I did a couple of years ago. Of course I do. And if truth be known, I really don’t want to turn back the clock – on how I look physically or how I feel emotionally. With age comes wisdom – it may be a cliché, but it is true. But even more – with age comes experiences and confidence and a sense of self that only seems to grow each year.

Ageing is a privilege. It is normal. And devastatingly, for some, they never will age.

Less than 100 years ago, being diagnosed with type 1 diabetes was a death sentence. Think about that for a moment. If I had have been diagnosed prior to insulin being available, I would have died before I was 25 years old. I never would have travelled, worked in a job that gives me incredible joy, spent so much time with friends and family, seen Tony Bennett live, learnt what an octothorpe is, watched the West Wing, attended my 20 year school reunion – or my 10 year school reunion for that matter, danced on the turf of the MCG as The Police sang, seen the Book of Mormon, read Harry Potter, gone to (and fallen in love with) New York City, met Oliver Jeffers, used an iPhone, gotten married or had a daughter. (2021 EDIT: AND …revisited and revisited and revisited New York, watched my girl turn into the most amazing almost-adult, stood on the stage at conferences around the world, extolling the value of the lived experience, stood alongside three amazing women as we put together the fantastic programme for the 2019 IDF Congress, Living with Diabetes stream, celebrated 20 years of marriage, road tripped across the US with Aaron, visited Graceland, sat in ABBA’s Arrival helicopter, ‘built’ my own pancreas, gone back to Paris another few times, and finally been able to sit on the grass at Place des Vosges, taken my family to Friends for Life, seen the language matters movement grow from the seed we planted into a global movement, lived through (and continue to…) a pandemic…)

My life would have ended before any of these things. Just because I’d been diagnosed with type 1 diabetes. Which makes me understand and feel the privilege of ageing more and more. Every diaversary, every diabetes milestone is worth celebrating.

I want to look forty (EDIT: forty-seven) – I want every battle scar I’ve earned to be visible; every success – and every failure – to be shown on my face; the story of every victory and disappointment to be told. Because these are part of who I am and I am so, so lucky to be here to keep telling my story.

Lucky to keep laughing, crying, learning.
And Zooming. So fucking much Zooming.

There is so much about diabetes that can’t be simply explained or managed. And even if we understand the mechanism behind why something happens, we can’t necessarily fix it!

The intersection between diabetes and anxiety is certainly one of those things. When I am anxious, I go high. That’s the way it is. If I am extremely anxious and have a panic attack, the adrenalin rush sends me to insanely high glucose levels that I know I can’t treat by just bolusing insulin, because there will a swift, aggressive crash at some point and any excess insulin will make it worse. Much worse, because nausea often accompanies how I am feeling in the moment, so the thought of an ‘eat-the-kitchen’ hypo is not great at all. 

I was feeling pretty anxious yesterday. It was a medium level hum that at times swelled to a loud banging noise, and I could sense that there was a topple on effect with my glucose levels. Except there wasn’t. At least not one that could be detected on my CGM graph, which was chugging along in range, albeit at the slightly higher end of that range.

But Loop was working hard to keep it that way. Micro changes to basal insulin showed a Loop graph of constantly changing dosing throughout the morning – at the same time I was feeling loud-banging-noise-anxious. At the moment there was a surge in anxiety levels – and I can pinpoint that moment – there was an accompanying surge in my insulin dose, but only for a little while. Because as my anxiety ebbed and flowed, so did my insulin dosing. All with me doing nothing.

Living with anxiety is one of the things that makes diabetes super difficult. I mean, there are so many things, but anxiety is a next level issue because the very idea of thinking about dealing with diabetes while dealing with an intense moment of anxiety is, quite simply, impossible. But even if I could, there is no way that I would be able to predict just how my glucose levels would respond, or the timing of that response, to act effectively. 

As ever when writing and thinking about automated insulin delivery it comes with a very honest understanding, and acknowledgement of my privilege and knowing that I am extraordinarily fortunate to have at my disposal the technology that can help me in this way. I’ve written and spoken about this a number of times, and I am always acutely aware of the advantage of having a system that takes away so much of the brain power needed to manage such a complex health condition. I say this not as an afterthought – it is an ever-present thought. 

But also ever-present is the gratitude that there is something with me that is providing such incredible insight into just how my diabetes behaves, operates and reacts to different situations. That is, of course, what CGM does. But it’s Loop gives an extra layer of insight – it shows me what my body would have been doing if my beta cells hadn’t gone on a permanent ‘tools down’ almost twenty-three years ago. And gives me an appreciation, and a reminder, of just how difficult diabetes is, and how incredibly challenging it is to attempt to perform the function of a highly sophisticated and evolved body organ!

Anxiety is unpleasant. What it does to diabetes is unpleasant. But having the tools to help manage its impacts on diabetes does help. It’s one less thing to worry about at a moment when it feels that I am being engulfed in a whole world of darkness and worry which is how I felt yesterday.

Now if someone could just magic up a DIY tool to stop the anxiety happening in the first place, that would be just dandy!

Seems as good a way as any…

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