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C/W This post contains content about diabetes and suicide and intended self-injury. 

If you need help, this Wikipedia page has a list of mental health crisis lines around the world.  And for a list of contacts actively updated and maintained by the Wikimedia Foundation, go here. 

We talk a lot about taboo topics in diabetes.  For years, there have been concerted efforts to shine a light on many of the issues and topics that have not received enough attention but are very important to people with diabetes. Often it is people in the diabetes community who find ways to delicately begin conversations, and that is then followed by an interest from researchers and clinicians.

But there are still some topics that are often seen as just too difficult, just too fraught, just too scary. 

Suicide and intended self-injury (ISI) fall into that group. 

At EASD this year, I was invited to join a meeting for the RESCUE Collaborative Community, a project that is lifting the veil on one of the most difficult issues in diabetes mental health. The name of this project is a clue to what it is trying to achieve: RESCUE (REducing SuiCide rates amongst individUals with diabetes).

The mission of this project is:

To reduce rates of intended self-injury (ISI) and suicidal acts by people with diabetes through improved understanding of the risk factors and implementing strategies to address them.  In support of this mission, RESCUE works with stakeholders across the health spectrum including patients and care partners, academia, healthcare professionals, advocacy groups, industry, payers, federal and state agencies and regulatory bodies.

This is a big issue and a difficult one. There is a lot to think about, a lot of unknowns and a lot of questions to be asked. To work out how to help people with diabetes who are at risk, there needs to be a better informed workforce, with evidence to develop strategies that are going to help. And we also need to know how to approach the very basics when talking about suicide and ISI in relation to diabetes. 

When it comes to diabetes and mental health something comes up frequently: there is limited dialogue and understanding between diabetes HCPs and mental health HCPs. I remember hearing Georgie Peters speak at the IDF World Diabetes Congress in 2017 about living with diabulimia. She said that she would be told to ‘go home and take your insulin’ – a completely inadequate approach. In her talk, Georgie said that is the same as telling someone with anorexia to ‘go home and eat’. But when trying to navigate care from two highly specialised health areas, that sort of response is rife. 

And so, how to we make sure that when looking at diabetes and suicide and ISI, we are mindful of the specific diabetes issues that need to be considered? 

At the meeting last week, we spoke about trying to identify people with diabetes who may need attention. Contemplating how insulin may be used as a way to self-harm is one consideration, so people being admitted to hospital with frequent DKA, and people admitted for a serious hypo could be a starting point to investigate. Of course, not everyone who has DKA or a serious hypo is self-harming. Diabetes gonna diabetes and sometimes, things just happen. But it certainly does seem a good place to begin, with targeted approaches to ask questions in an appropriate way that might help identify people who need mental health support, in particular about ISI and suicide, with an aim of reducing risks. 

One of the other discussion points was asking about the role of peer support and the community when talking about suicide and diabetes? Is peer mentorship an idea? How can peers support each other? In the way that #TalkAboutComplications kickstarted meaningful community discussions about the taboo topic of diabetes-related complications and helped people with diabetes feel safe to first open up and speak about their own experiences of living with diabetes-related complications, could there be a way to signpost discussions about serious mental health conditions. And would this break down stigmas, help people realise they are not alone, and seek help, or at least ask where to seek help? Or, is this a burden too big for peer support?

There’s a lot to unpack here, and there really are no simple answers. But this work spearheaded by Professor Kath Barnard-Kelly with a team of dynamic health professionals, with input from diabetes advocates is lifting a veil to start to look for those answers. 

For more information about the RESCUE Collaborative Community, click on the image above.

MORE

#dedoc° voice, the brilliant Niki (@WhatNikiDidNext) live tweeted a symposium on suicide and ISI at EASD, and you can see her tweets here. Presenters at this session were Kath Barnard-Kelly, Marissa Town, Tadej Battelino and Simon O’Neil.

Disclosure

My travel and accommodation were covered by #dedoc°, where I am employed as Head of Advocacy. Thanks to EASD for the press pass.

I was invited to attend the RESCUE Collaborative Community meeting. I was not paid for my time to attend.

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.)

Friends, how’s your mental health today. Mine. Is. Shit.  

Gosh, I feel as though I have been through the wringer, hung out to dry and then, just at the moment that everything was looking good again, dropped in a muddy puddle and trampled on by a herd of bison. I mean, not really, because bison are not typically found in the especially hipster part of downtown Melbourne I reside, but hopefully you now have a picture of how I’m feeling. 

Not even the overabundance of sparkly necklaces (and ever-present red lipstick) I threw on this morning can distract from the fact that I am exhausted, look as though I’ve been weepy for most of the day (because I have) and am just feeling so damn over everything right now. 

Not a good mental health day.

Somehow, I held it together for a live Q&A about diabetes and mental health which I may or may not have treated as my own personal therapy session. (You can watch the video here.) Thankfully, psychologist, the ever-wonderful Dr Adriana Ventura, offered some fabulous tips for how to take care of our mental health during this time that is still being referred to as unprecedented times, but I’ve taken to calling the clusterfuck period. 

The moment today that was the most difficult for me to deal with was just after 11am when the NSW Premier told us the grim news out of her state. I know that I probably should stop watching the pressers, especially the ones out of NSW. It’s not my state, so most of what is being said is actually not all that relevant to me and my family, and the repeated lies that are casually thrown around like confetti at weddings we can’t have anymore make me furious. And yet, even knowing that, I find myself sitting through them most days, yelling at the screen while madly tweeting my fury. 

But today, instead of yelling, there was crying. The NSW Premier said ‘We extend our condolences to the family of a man who has died. He had received one vaccination. And he DID have underlying health conditions.’ She accentuated the word ‘did’ to underline what she was saying. 

And so, where back, or perhaps still, at this point. That point is where we dismiss those with health conditions as nothing more than covid collateral.

I cried as she said it, angrily wiping away tears at how easily I was once again being made to feel expendable. I felt sad and broken and just so damn beaten. I have spent the last twenty months doing all I can to protect myself, knowing full well that those efforts protect others too. I rarely go out; I never leave the house without a mask; I’ve washed my hands and rubbed so much sanitiser into my skin that I feel the dermatitis that has started will never leave; I’ve followed all restrictions; when I do go anywhere, I check in at each location; I’ve had a covid test every time I so much as feel sniffly; and I got vaccinated the second I was eligible.

I have been deliberately compliant when it comes to covid.

And when it comes to diabetes, my deliberate non-compliance has meant that I am continuing to manage in a way that, according to every HCP and researcher I’ve ever met, is giving me the best chance to live well and to live long with diabetes. 

And yet, despite all that, if I get covid and die, the message is it’s because I had an underlying condition. I already have one foot in the grave; covid just gave me a gentle push the rest of the way. 

Well, fuck that.

I know I’ve written about this before, and honestly, this far into it all, I should be better at just ignoring it. But when it is coming from our politicians and the media, and I’m hearing it from people in the community, it’s hard to not take it personally.

The man the NSW Premier referred to, died from covid, not his pre-existing health condition. It certainly may have meant that covid was complicated for him, but if he’d not got covid in the first place, he probably would still be alive. His underlying medical condition doesn’t make him any less worthy, or any less of a loss. It doesn’t excuse his death.

I don’t know when people will stop with this hurtful and harmful rhetoric. I’d have hoped that by now the communication efforts from those who stand up every day to tell us the bad covid news would be more nuanced and more respectful. 

I guess that’s too much to hope for.  

A week out from National Diabetes Week, and this piece has been sitting in my ‘to be published’ folder, just waiting. But the post-NDW exhaustion coupled with lockdown exhaustion, plus wanting to make sure that all my thoughts are lined up have meant that I haven’t hit the go button.

In the lead up to NDW I wrote this piece for the Diabetes Australia website. That piece was a mea culpa, acknowledging my own contribution to diabetes-related stigma and owning it. I also stand by my thoughts that the stigma from within the community is very real and does happen. 

But what I didn’t address is just where that stigma comes from. Those biases that many people with type 1 diabetes (and those directly affected by it) have towards type 2 diabetes come from somewhere, and in a lot of cases that is the same place where the general community’s bias about diabetes comes from. It is all very well for us to expect people with type 1 diabetes to do better, but I’m not sure that is necessarily fair. I think that we should have the same expectations of everyone when it comes to stamping out stigma. 

And so, to the source of stigma and, as I’ve said before, it comes from lots of places. As someone who has spent the last twenty years working in diabetes organisations, I know that the messaging my orgs like (and including) those that have paid my weekly salary has been problematic. I still am haunted by the ‘scary’ campaign from a few years ago that involved spiders, clowns, and sharks. (If you don’t remember that campaign, good. If you do, therapy works.)

For me personally, I don’t think much stigma I have faced has come at the hands of other PWD. Sure, there’s the low carb nutters who seem to have featured far too frequently on my stigma radar, however, the most common source of stigma has undoubtedly been HCPs. 

It’s not just me who has had this experience. The majority of what I have seen online as a response to experiences about stigma involves heartbreaking tales of PWDs’ encounters with their HCPs. 

While I will call out nastiness at every corner, and no stigma is good stigma, it must be said that there is a particular harm that comes when the origin of the stigma is the very people charged to help us. Walking into a health professional appointment feeling overwhelmed, scared, and frustrated only to leave still feeling those things, but with added judgement, shame and guilt is detrimental to any endeavours to live well with diabetes. In fact, the most likely outcome of repeated, or even singular, experiences like that is to simply not go back. And who could criticise that reaction, really? Why would anyone continually put themselves in a situation where they feel that way? I wouldn’t. I know that because I didn’t.

It’s one thing to see a crappy joke from a comedian who thinks they’re being brilliantly original (they never are) or the mundane, and almost expected, ‘diabetes on a plate’ throwaway line in a cooking show, but while these incidents can be damaging, they are very different to having stigmatising comments and behaviours directed at an individual as is often the case when it is from a HCP. 

Of course, HCPs aren’t immune to the bias that forms negative ideas and opinions about diabetes. In the same way that people with type 1 diabetes form these biases because those misconceptions are prevalent in the community, HCPs see them too. Remember this slide that I shared from a conference presentation? 

Slide from Jane Dickinson’s talk at ADA in 2019.

This came from student nurses. Just think about that. Students who were training to be HCPs who would inevitably be working with people with diabetes. A I wrote at the time:

‘They hadn’t even set foot on the wards yet as qualified HCPs. But somehow, their perceptions of people with diabetes were already negative, and so full of bias. Already, they have a seed planted that is going to grow into a huge tree of blaming and shaming. And the people they are trusted to help will be made to feel at fault and as though they deserve whatever comes their way.’

Is it any wonder that, with these attitudes seemingly welded on, that people with diabetes are experience stigma at the hands of their HCPs?

The impetus can’t only be on PWD to call this out. And the calls to fix stigma can’t exclusively rest on the shoulders of PWD – we already have a lot of weight there! It must come from HCPs as well – especially as there is such a problem with this group. Perhaps the first step is to see real acknowledgement from this group of their role here – a mea culpa from professional bodies and individuals alike. Recognising that no one is immune to the bias is a good step. Owning that bias is another. And then doing something about it – something meaningful – is how we make things better for people with diabetes. I really hope we see that happening. 

More about this:

Becoming an ally – how HCPs can show they’re really on our side. 

Ask a group of people with diabetes about their experiences of stigma, and for examples of the sorts of things they’ve heard and before long you’ll be able to compile a top ten list of the most commonly heard misconceptions that have contributed to diabetes having an image problem. When I’ve asked about this recently, the main perpetrators of these seemed to be healthcare professionals. More on that later this week. 

This year, in the Diabetes Australia National Diabetes Week campaign about diabetes-related stigma, two videos have been produced and they’re almost like a highlight reel of some of the stigmatising things people with diabetes hear. 

Let me tell you something I found really interesting. As part of the testing of these, I showed them to a heap of people with diabetes and a heap of people without diabetes. The reaction from people with diabetes varied from sadness (including tears), to anger and frustration, and mostly, recognition in everything they saw. 

The reaction from a number of people without diabetes was disbelief that this really happens. They simply couldn’t believe that people would be so insensitive; so cruel, so shaming. 

However, for so many people with diabetes, this is our reality. 

Here’s one of the two videos we produced. (You can watch the second one here.) Already, this is being shared widely in our own diabetes community. I’ve lost count of the places online I’ve seen this shared. Keep doing so, if you can. Because clearly, we need to get the message out to those without diabetes so they understand that not only is this sort of stigmatising behaviour harmful, but it is also horribly common. And it needs to stop. 

DISCLOSURE

I work for Diabetes Australia, and I have been involved in the development of the Heads Up on Diabetes campaign. I’ve not been asked to share this – doing so of my volition, because I think the messaging is spot on. The words here are my own, and have not been reviewed prior to publication.   

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…

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. 

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

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