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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?

I probably should stop thinking of my job as ‘my new job’. I’ve been at Diabetes Australia now for well over five years. But for some reason, I still think of it that way. And so do a lot of other people who often will ask ‘How’s the new job?’

Well, the new job is great, and I’ve enjoyed the last five years immensely. It’s a very different role to the one I had previously, even though both have been in diabetes organisations. 

One thing that is very different is that in my (not) new job I don’t have the day-to-day contact with people with diabetes that I used to have. That’s not to say that I am removed from the lived experience – in fact, in a lot of ways I’m probably more connected now simply because I speak to a far more diverse group of people affected by diabetes. But in my last job, I would often really get to know people because I’d see them at the events my team was running, year in, year out. 

Today, I got a call from one of those people. (I have their permission to tell this story now.) They found my contact details through the organisation and gave me a call because they needed a chat. After a long time with diabetes (longer than the 23 years I’ve had diabetes as an annoying companion), they have recently been diagnosed with a diabetes-related complication. The specific complication is irrelevant to this post. 

They’ve been struggling with this diagnosis because along with it came a whole lot more. They told me about the stigma they were feeling, to begin with primarily from themselves. ‘Renza,’ they said to me. ‘I feel like a failure. I’ve always been led to believe that diabetes complications happen when we fail our diabetes management. I know it’s not true, but it’s how I feel, and I’ve given myself a hard time because of it.’ 

That internalised stigma is B.I.G. I hear about it a lot. I’ve spent a long time learning to unpack it and try to not impact how I feel about myself and my diabetes. 

The next bit was also all too common. ‘And my diabetes health professionals are disappointed in me. I know they are by the way they are now speaking to me.’

We chatted for a long time, and I suggested some things they might like to look at. I asked if they were still connected to the peer support group they’d once been an integral part of, but after moving suburbs, they’d lost contact with diabetes mates. I pointed out some online resources, and, knowing that they often are involved in online discussions, asked if they’d checked out the #TalkAboutComplications hashtag. They were not familiar with it, and I pointed out just how much information there was on there – especially from others living with diabetes and diabetes-related complications. ‘It’s not completely stigma free,’ I said. ‘But I think you’ll find that it is a really good way to connect with others who might just be able to offer some support.’ 

They said they’d have a look. 

We chatted a bit more and I told them they could call me any time for a chat. I hope they do. 

A couple of hours later, my phone beeped with a new text message. It was from this person. They’d read through dozens and dozens of tweets and clicked on links and had even sent a few messages to some people. ‘Why didn’t I know about this before?’, they asked me. 

Our community is a treasure trove of support and information, and sometimes I think we forget just how valuable different things are. The #TalkAboutComplications ‘campaign’ was everywhere a couple of years ago, and I heard from so many people that it helped them greatly. I spoke about it – particularly the language aspect of it – in different settings around the world and wrote about it a lot.

While the hashtag may not get used all that much these days, everything is still there. I sent out a tweet today with it, just as a little reminder. All the support, the connections, the advice from people with diabetes is still available. I hope that people who need it today can find it and learn from it. And share it. That’s one of the things this community does well – shares the good stuff, and this is definitely some of the good stuff!

Want more? 

Check out the hashtag on Twitter here.

You can watch a presentation from ATTD 2019 here

Read this article from BMJ

If I’m asked about the burden of diabetes stigma, a complex tree diagram starts to form in my head. There are branches sticking out at weird angles with arrows and overlapping segments and odd clusters…and I suddenly become burdened just thinking about diabetes burden!

I’ve written before many times about just how heavy diabetes can be – a dense weight that comes from the never-ending need to ‘do diabetes’ and the never-ending attempts to make sense of it all. And I’ve commented on the emotional weight that we feel when diabetes becomes overwhelming and distressing, and the burden of burnout. And I’ve also written a lot about the relentless stream of diabetes admin – and why having a personal assistant to manage my diabetes would be just so damn useful to alleviate the burden of appointment making, prescription filling, consumables stocktaking and complications screening

Burden takes on many forms. And it means different things to different people. If there is a burden spectrum, we would see people plotted all along the line. And we would move around as well. I know that there have been times I’ve feel far more burdened by diabetes, and I know that I feel so much less burdened since I’ve been using Loop because the tasks that added to that daily burden have diminished considerably. Diabetes makes a lot more sense a lot more of the time without me needing to work it out. Of course, the weight is less. 

But on top of the daily tasks and the feelings of being overwhelmed, there is still more that can contribute to burden. One of those things is stigma – the way others make us feel about diabetes – about our diabetes – can add significant burden. 

Yesterday, I tweeted this:

If you want to see an incredibly diverse and interesting discussion about how stigma has impacted people with diabetes, and parents of kids with diabetes, click on the tweet above and read the replies.  I asked the same question on my Facebook page and the stories there were equally harrowing. People’s experiences are heartbreaking. It becomes clear why people drop out of healthcare, are terrified to see HCPs, or try to hide their diabetes from others when you understand how they have been treated. 

The weight of that burden is heavy. The judgement and blame and shame can weigh us down. The emotional weight of stigma can be paralysing. 

One of the themes that is recurring when it comes to stigma discussions is the idea that we are not doing enough to look after ourselves. That could be in reference to developing long-term complications, or it could be an in-the-moment situation that someone thinks we should be better prepared for. I remember someone once criticising me for not having any jellybeans on me when I was having a hypo. I’d had three hypos already that day, and had worked through my stash. I wasn’t wilfully neglecting my diabetes by being caught short. But that was the assumption. 

Another theme is that diabetes is a character or personality flaw, brought on by not caring enough about out health. How tiring it is to have that being said when we are also trying to simply manage to live with diabetes. Weight stigma and diabetes stigma go hand in hand for many, with assumptions made left, right and centre. 

Being diagnosed with diabetes creates burden. Living with diabetes brings daily burden. Worrying about how diabetes might impact our futures crafts more burden. And stigma adds even more. It’s exhausting, hurtful and just downright unnecessary. 

More musings about diabetes and stigma

Stigma & diabetes-related complications

Owning my own contributions to diabetes-related stigma in people with type 2 diabetes. 

Where does stigma start? 

How insisting on defining diabetes when it doesn’t matter adds to stigma

Last year, a lot of the work I did centred around mental health and diabetes. It’s funny how things happen – we had always planned for it to be the focus for our National Diabetes Week campaign at Diabetes Australia (disclosure: I work there), and then COVID-19 happened, and it seemed all the more important to make sure that we were flagging just how much people with diabetes’ mental health was being impacted by the pandemic. Spoiler alert – the answer was, and still is, a lot.

Last year also happened to be the year that my own anxiety went from being something I’d dealt with mostly in the past to something that became very much in the present and a bigger issue for me than living with diabetes. I had a few panic attacks that terrified me and had the domino effect of adding to my anxiety as I’d wait for the next one to strike. But it wasn’t just those acute moments that made me feel anxious. It was a low-grade hum that became the soundtrack to every waking moment, sometimes exploding into a roar.

Of course, COVID-19 contributed to it all, because how could it not? But I also knew that these feelings of disquiet and unease had started well before the pandemic was firmly on my radar, before our first lockdown, and before Melbourne’s second lockdown – the longest and strictest is the world. 

Trying to keep it all in check was tough but at the time I thought that the fact that there was just so much going on with work was a good thing. I simply couldn’t examine too closely what was going on with my mental health because work was just so, so intense, and anyway, of course I was feeling fretful and anxious because who wasn’t?! Hindsight, of course, suggests that it probably would have been better to stop for a moment and address that hum rather than try to explain it away or drown it out with more and more noise that actually only made it worse. 

And so, I started putting words to what I was feeling because that was a first step to acknowledging that I needed to do something. And that I needed help. I started to check in on my anxiety levels each morning. Or when something significant, (or even not all that significant) happened, I’d stop and ask myself how anxious I felt. Starting to be able to name how I was feeling, and rate it, meant I could do something about it. 

I had occasional telehealth appointments with a psychologist, to work through and to help develop strategies for coping. And to spend time working out where this anxiety had stemmed from. This is something that has always been important for me to do. When I have had periods of extreme anxiety before, there has been no coming out of it without being able to pinpoint where, when and how it started. 

Sometimes that’s not all that easy to do, other times it’s glaringly obvious. When diabetes has been acknowledged as the cause of my increased anxiety, it’s never enough to just say ‘diabetes’ – it’s usually something more nuanced and specific. And so down the rabbit hole I go as I try to pinpoint exactly what I need to work through to start feel better. 

But this time, it was clear. It wasn’t having diabetes; it was being in diabetes. I know that sounds ridiculous, but it makes sense to anyone who has ever worked in a diabetes-related job, or spent a lot of time in the diabetes community. It was the latter that was making me very, very anxious. I’d already been aware that I was experiencing diabetes advocacy burnout, but anxiety is different to burnout. It was more than just the sense of feeling overwhelmed and nervous every time I raised my head above the parapet (which is a lot because of my job and advocacy work). So, I had a head start on what needed attention even before speaking with the psychologist, but we did work at narrowing down just what the triggers were for me that increased my anxiety levels, how to avoid them and how to cope if I couldn’t.  

I learnt to ‘catch the fall’. That’s why checking in became important to me. When I could start to verbalise how I was feeling, and isolate when anxiety levels were increasing, I could do something. Breathing exercises, grabbing a book – any book – from the bookshelf and focusing on a page of words, going for a walk around the old laneways of our old neighbourhood. These all acted as circuit breakers, allowing me to catch the fall before I started to feel really, really anxious. And managed to catch most panic attacks. In fact, the rare times I actually did have something resembling a panic attack was a trigger that hit me in the face without warning. It happens – those triggers pop up despite best efforts to avoid them.

I’ve just returned to work from almost five weeks of holidays. It had been twelve months since I’d taken any time off, and (again: hindsight) I should have been smarter and taken a break when my anxiety was really starting to affect my day-to-day existence. Because right now, of course I feel like I can breathe freely and as though my head is clear. The dread I’d wake up with – a pressing down feeling that came at me from every angle – slowly lifted. It wasn’t just work that I took the break from. I removed myself from social media completely. Actually, that’s a lie. I doom scrolled my way through Twitter for about two weeks following what was going on in the US, but I had every single diabetes term, hashtag and phrase muted.  

I am still anxious. I still do my regular check ins to see just how anxious I am feeling about different situations (the one I did yesterday morning where I asked myself I how I was feeling about actually going into my office for the first time in almost a year resulted in tears, so I rated that as ‘quite anxious’, but I was easily about to understand where that was coming from! COVID-19 is still here, even in Melbourne.)

Unsurprisingly for me, the most anxious I felt (rating: really, really, really anxious right now and can I please crawl under a blanket on the sofa with a doggo at my feet) was when I checked in after spending an hour on Twitter after unmuting the word diabetes. I muted it again, because baby steps and still steps. 

And so, this rambling, messy post exploring just how I’ve been feeling in my head has no answers or solutions or ideas. Except I know that 2020 was tough. And I know that I am not alone in having felt that way. I also know that in the scheme of things, despite anxiety, despite COVID-19 and despite…well…everything, I’m mostly okay. And I’m starting 2021 in a place of some clarity and freshness, which I hope means that if that anxiety hum starts to get louder again, I’ll be able to hear that happen. And catch the fall before it’s too late.

It seems that my life has been all about hypoglycaemia lately. Not because I have been scrambling about with low glucose levels, but because it has been taking up a considerable number of my work hours and focus.

Diabetes Australia (disclosure below) has been running The Lowdown 2020, and I’ve been hosting a podcast (to be released in 2021) for HypoRESOLVE (also disclosed below). 

The difference between the two projects is mostly the people I have been speaking with. For the Diabetes Australia campaign, we have had a very strong focus on the lived experience, and hearing directly from PWD about their own hypo stories with an emphasis on how hypos affect our emotional wellbeing and mental health.  

For the HypoRESOLVE podcast, I’ve mostly been interviewing HCPs, researchers and academics, and talking about the specifics of the different work packages that make up the very large project. 

Sometimes, that gap is quite stark. Having said that, however, it is so refreshing to hear HCPs acknowledge just how challenging hypoglycaemia can be to live with, and how their knowledge base is not always in line with the lived experience and practicalities of a real-life low. Perhaps one of my favourite episodes we recorded for the HR podcast was a wonderfully open and engaging conversation with Simon O’Neil (from Diabetes UK) and Simon Heller (diabetes specialist and researcher from Sheffield in the UK). Together, we spoke about our own experiences – Simon O and me with our own hypo tales, and Simon H spoke about what he has come to learn from PWD. 

Together, the conversation showed just how to bridge that gap – a lot of it is with understanding and listening to the lived experience, and recognising the expertise of the PWD. 

Hypoglycaemia remains a significant issue of concern and source of anxiety for many people with diabetes. For those of us who are fortunate to have access to DIYAPS or other hybrid-closed loop systems, we may have found that our hypo experiences have changed, and the number of hypos has diminished. I am one of those people who now actually feels as though I am nailing the number of ‘accepted’ hypos in a week, rather than being an overachiever. And a special thanks to Frank Sita for mentioning this specific issue in the Diabetes Australia Facebook Live chat the other night. Being told that we should be averaging two or three hypos a week can be absolutely soul destroying. Especially when I’m yet to hear a never-fail (or even only-sometimes-fail) strategy for addressing it. I’ve said this before, but the idea of saying ‘Try to avoid hypos’ doesn’t make sense. If we could do that, we would be! And it suggests that we are making them happen on purpose. Same as suggesting we ‘Run a bit higher, like maybe 10mmol/l’. That’s the same as saying ‘Run a bit in range, like maybe between 4 and 8mmol/l’. That’s not how diabetes works! 

What do we learn when we run activities that talk about hypos? We learn that many people are grateful for others’ stories. That people feel less alone, and better equipped to speak about and attempt to address any issues they may be experiencing. We know people pick up tips and tricks from others. We know that (once again) peer support is important to many PWD. 

So, with that, I’m sharing a couple of videos from the last week or so. 

First up is the Q&A I did with Professor Jane Speight from the ACBRD last week, where we had a very frank discussion about the mental health implications of hypos. 

And this week’s Heads Together event I hosted, a wonderful collection of Aussie PWD indulged me as I fired questions at them about their own hypo experiences.

You can also check out the Diabetes Australia campaign here, and by searching for the hashtag #HyposHappen on socials. 

Disclosures

I am the Manager of Type 1 Diabetes and Communities at Diabetes Australia and am involved in the Lowdown 2020. I have not been asked to write about this, or share information about the campaign, but I am doing so anyway because I think it is a great initiative. Of course I get paid for my work at Diabetes Australia – they employ me! (But this, as with all my blog posts, was written in my own time.)

I am on the Patient Advisory Board for the HypoRESOLVE project. This is a volunteer position and the only financial contributions I have received for my work on this project are to cover travel, accommodation and expenses. (So not a cent this year!) My time recording the podcast is not paid. 

No one has reviewed this before I hit the publish button. The words and all associated typos are all my own. As always, you should consider my bias in anything and everything I write. 

Last year, at the IDF Congress, after a full and busy day of talks and sessions, there was a night of fun with a group of diabetes mates at a Korean BBQ restaurant. As we sat around the fiery pit, we were talking about some tricky things with diabetes and what helps and what doesn’t when we’re having one of those days.

Wielding a pair of tongs and other cooking implements as I pretended to have superior BBQ skills (I don’t), I explained to the table my cup of tea theory, how it is exactly what I need on one of those crappy diabetes days, and how my husband has absolutely mastered it. 

‘I don’t need anyone to help, or try to fix the situation – especially as often the situation cannot be fixed. I want someone to tell me that diabetes sucks and then bring me a cup of tea.’  Two of the men sitting opposite me had a complete and utter Venus/Mars look on their faces. ‘A cup of tea? What’s that going to do?’

‘It’s not meant to ‘do’ anything,’ I said, flipping over some steak, and trying to not burn myself or others sitting near me. ‘Because he can’t ‘do’ anything about my diabetes being there or what is pissing me off. It just makes me feel less stressed out.’

‘Okay – well, if I ever see you on the side of the highway with a flat tyre on your car, I won’t stop and help. I’ll make sure to drive on past, find a café and come back with a cup of tea for you,’ one of them said with a cheeky smile. 

‘That would be lovely,’ I told them. ‘By the time you got back, I’d have changed the tyre over and be ready to drive off, so tea would be great. Bring some wipes too to clean my hands. BUT, that’s not what I am talking about anyway, and you know that!’

This isn’t about not wanting help and thinking I can do everything by myself. Or that I need to be some sort of superhero, (because there are no superheroes in diabetes). It’s that most of the time there is no way to make things better or actually fix things.

I hate to be gendered, but in my personal experiences, it is men around me that quickly jump in to offer suggestions and offer solutions. I understand why. My dad struggles with the idea that I’m doing things tough and doesn’t like to not be able to help. He doesn’t really believe that sometimes the act of just being there provides me with bucketloads of support and reassurance. When I was first diagnosed, Aaron wanted to stop or fix the crappy moments because he didn’t want me to have to experience them. While I always appreciated people wanting to ease the distress, frustration and annoyance of diabetes, I also knew that their ideas and suggestions were something that I’d either already tried, or thought of and knew wouldn’t work. 

And sometimes, the truth about diabetes is that there is just no fixing the situation. Instead, it’s a matter of riding it out. 

These days, when I’m going through those shitty diabetes moments (or hours, or days or weeks, or 2020s…), Aaron is likely to gently set down a freshly brewed cup of black tea and a biscuit, accompanied with a back rub and the proclamation ‘Diabetes sucks’. And for me, that is worth more than troubleshooting or trying to work out why diabetes is behaving particularly nastily right now. 

I talk about this often to loved ones of people with diabetes. Obviously, this is my experience and what works for me, but it is also mixed with plenty of tales from friends who speak about how when low they don’t want someone asking them how they got that way, of if high why they forgot to bolus. They don’t want someone suggesting they call their diabetes HCP or try something different or eat a different diet. They would rather notdiscuss diabetes right then.  

I know that burnout happens for those around diabetes as well as those of us living it. It’s different and it impacts people in distinctive ways. But I suspect that some of that burnout may come from the constant desire to make the crappy diabetes stuff stop or not happen in the first place, even though that is not really a likely outcome. Perhaps one way to address that loved one burnout is to step back for a moment and not try to swoop in and repair what has gone wrong, or what is upsetting us, but instead to let us know that you are there for us in whatever way we need. And sure, for some people that may be going through a checklist of what happened during the day and talking through, step by step, how to make it different next time. 

But for me? It’s a cup of tea and a shared understanding of the complete and utter suckiness that often accompanies diabetes. It may not seem like much; it may not seem to solve anything, really. But it gives me time to breathe and not have to talk or think about diabetes, or feel as though I have done something wrong. A cup of tea. (And maybe don’t forget the Tim Tam…)

This post is dedicated to my friend Amin who I am missing terribly, even though he teased me mercilessly in that Korean BBQ restaurant about my cup of tea theory. But I do want to thank him for the many virtual cups of tea he has sent me this year when I’ve really needed one.

Diabetes Awareness Month has come to a close and with it the blue that has washed over my social media feeds will dim a little. I had a quiet month, spending most of my time following others rather than sharing my own content. It seems to have been representative of my year in diabetes advocacy, really. 

I’ve been quiet. It wasn’t planned, but it has been deliberate. And it hasn’t gone unnoticed. I’ve started and stopped and started and stopped this post for a while to answer the messages from people who have so kindly asked if I am okay. Let’s see if this is the one that sticks…

Earlier this year, I wrote about having a panic attack while on a plane after landing back in Melbourne from ATTD in Madrid. You can sort of read about it here, although I was pretty vague about what actually happened saying little more than that I turned on my phone to a million Twitter notifications about a blog post that some people had assumed was written about me and then subsequent comments. I was surprised, horrified and more than a little confused. 

This came hot on the heels of a couple of other tricky situations. There was the run in with the diabetes HCP who told me to tone down (after they completely misrepresented what I had written about). And then there was another HCP rallying troops to call me out (that caused me to lock my twitter for the first time ever at the end of last year). 

Anyway…the culmination of all these things resulted in the realisation that this year was going to be a lot different for me. I was going to take a massive step back from much of the work I did that was public facing. I felt that I simply couldn’t take the scrutiny that was coming my way.  

Even before the panic attack on the plane incident, I was feeling unsettled. I was unspeakably nervous about the presentation I had been invited to give at the conference in Madrid. This was a completely alien feeling to me. I have been speaking publicly for decades, and for twenty years, comfortably stood on stage playing the flute for anyone who would listen. Standing in front of an audience doesn’t make me nervous. It doesn’t make me sweaty and scared. And yet, here I was wondering whether I should not go to Madrid at all to stand up on that stage. But after some ridiculous bravado as seen in this post, I decided that I had to go. 

As I sat on that plane, desperately trying to recover from the panic attack that was making it difficult for me to breathe and hiding my tears from the other passengers, I had a fleeting thought that I probably should have gone with my gut feeling and stayed home!

And so, I felt that there was only one thing I could do. Forget the whole stand up thing and instead step back. I wasn’t necessarily sure what that would look like. I couldn’t stop attending and being part of diabetes meetings and conferences because that is part of my job, but I could turn down speaking engagements or anything that put me in a position where I was sharing my personal, lived experience that others might find challenging, or at odds with their own. I needed to deal with the diabetes burnout that was so, so heavy and weighing me down.

COVID-19 certainly helped with that. As the world got turned upside down, a lot of the things that I was worried about simply didn’t happen. It became easier for me to limit my interactions with people and hide away a bit more. 

The feelings of burnout and anxiety about being part of the community didn’t disappear, but they seemed less urgent. 

And with that came the realisation that the burnout I was feeling because of diabetes actually was not because of my diabetes at all. 

Diabetes burnout has always happened to me when those constant diabetes tasks became too overwhelming; when just the thought of opening up a meter bag, or checking my CGM trace was too much to even contemplate. Burnout meant that every single number became a measure of my value and worth. I’d lose all perspective and lose all confidence of my abilities to actually do what I needed to do. 

The burnout I felt now was the effort of being a diabetes advocate IN the diabetes community. It was fearing that I was being seen in ways that actually were completely inaccurate – in fact at complete odds with everything I have ever stood for – and that led me to second guess everything I said, fearing that I would be misunderstood. It was feeling vulnerable and scared and exposed in the community that was meant to support me. 

I received an email from someone in the DOC who has been around for many years, and I have known (on Twitter only) who told me that because I am confident in my communication, am comfortable challenging ideas different to mine and share opinions that not everyone agrees with it, I leave myself open to criticism. And that criticism and the dialogue that follows resulted in their corner of the diabetes community being less enjoyable to him and others. All while suggesting that, unlike he, who has never deliberately set out to disagree with anyone – I seem to revel in it. 

Interesting take. I don’t seek to disagree with people. But if anyone is saying something that I believe is stigmatising to PWD or minimising our experiences, I will call it out. It’s been my MO for almost twenty years. 

I never replied to the person who sent me that email. I cried about it for days, however, and have it filed away and occasionally return to the half-written response that I keep meaning to finish so I can hit send on my reply. I feel it’s quite impolite that I’ve not replied to someone who took the time to write to me… But, truthfully, I am too tired, and that so-called confidence has abandoned me. 

Diabetogenic is the least active it’s been since I started it close to ten years ago. That’s not because I have nothing more to write – I still write every single day, I just squirrel things away now, too afraid to share them, sticking to safer topics – research call outs, fundraising initiatives, commenting on things that aren’t controversial or taboo topics. 

I started this blog because it was the space for me connect with others – not only people who were walking the same diabetes path as me, but also those who were doing things very differently. Because often, they are the people I learn most from. 

It became a place I could write about those issues that were tough – the mental health challenges of diabetes, the frustrations and desperation I felt about the health system, trying to navigate through health professionals who refused to acknowledge that PWD belong everywhere and anywhere diabetes is spoken about. And it was a place that my split-apart heart was able to open up and share the unspeakable sadness that I felt as fertility issues became part of my life. I am so grateful that I was able to do that and receive the support that I so desperately needed from people who understood how the impact of diabetes on those fragile, and so, so hard parts of life shattered me into a million broken pieces. Because it was those people who helped glue me back together. 

Wanting and needing that support and connection hasn’t stopped. I still seek it. I’m just a little more cautious about how I go about it these days sticking with friends and others I feel safe with rather than the wider community that doesn’t feel safe. I know where to go to get what I need.

I don’t really know what to do with this blog anymore. Feeling unable to share a lot of what I want to say is alien to me. But for now, this doesn’t seem to be the place to do it. I guess I continue as I have been – hitting publish when I feel I can, and for the next month, anyone popping by will see a lot of pleas to donate to Insulin for Life. 

And I guess that will have to be enough for now.

Knowing where to get what’s important.

 

 

For more information (all Australian sites):

http://www.ruok.org.au

http://www.beyondblue.org.au

http://www.lifeline.org.au

Today, Australian actress, comedian and activist, Magda Szubanski wrote a twitter thread that was eloquent, to the point and damning. And heartbreaking. Magda is part of a Victorian Government ad campaign encouraging Victorians to stay home during our COVID-19 second wave. After donating her time to make the ad (the fee she received was donated to the Red Cross Beirut fund which she only pointed out after people were saying she was financially benefitting from pandemic) she has been criticised by people, and that criticism has been nasty, personal and insulting.

Today, her twitter commentary was fair and squarely aimed at Pete Evans who apparently is a health professional, epidemiologist, virologist, public health expert television chef. Evans, in full flight indignation took to his FB page yesterday to exclaim how horrified – HORRIFIED – he is at the TVCs, calling them offensive and disgraceful.

Interestingly, he has not called any of the people making comments on his FB post offensive and disgraceful, despite the way they have been fat shaming Magda, calling her unhealthy and making personal attacks. There was more than one reference to the movie ‘Babe’.

Pete Evans knew what he was doing. He didn’t specifically mention Magda’s weight – in fact he didn’t mention Magda by name. But he did use an image of her from the advertisement in his post. That was enough to summon his flying monkeys to glide in and do his dirty work. Which they sycophantically did, tripping over themselves to be the loudest and most eager to do Evans’ bidding. Anyone who so much as suggested that perhaps the comments about Magda were inappropriate was told to pull their head in.

In true gaslighting form, Pete Evans has claimed that he didn’t in fact fat shame Magda. He followed up his earlier post with another, where he has centred himself as the victim – a martyr if you will – because he is being called out for his prick-ish behaviour.

It is disappointing to see that communities that are built around shonky foundations of wellbeing become nothing more than breeding grounds for hate, shaming and discrimination. Leaders of the groups decide who the latest target will be and then unleash the hounds to do the nastiness. I’ve seen it, had it happen to me first hand, and pushed back on it at every single point I’ve been able to.

This behaviour isn’t new.

I don’t want to give Pete Evans more air. But I will because people like him are dangerous, and his behaviour is nothing short of poisonous. I’m not specifically referring to alternative health lunatics – although they are a particular brand of toxic. Unfortunately, we see it all too frequently these days. These are the methods employed by LCHF bullies. We see it in the diabetes world. It happens when people style themselves as (super)heroes, stopping at nothing to advance their cause, and anyone who dares disagree is shut down.

Today, we saw real ugliness on show from Evans and his supporters. We saw how social media can – and frequently is – used to form a pack mob that unfairly shames and targets people. But we also saw grace from Magda. Which, I hope, is what will be the lasting memory of any scenario like this one.

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