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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.

I’ve written a few times about my thoughts on the role of psychologists in diabetes care. You can read about it here, and here. Or TL/DR: I believe that every person with diabetes should have access to a psychologist as part of all diabetes multidisciplinary care. Of course, not everyone will want to see a psychologist – and of course, that’s fine – but if they do, it should be easy, accessible and affordable to do so.

Right now, if you are an Australian adult living with diabetes, your input is needed into the development of a new information resource that will provide information on why, when and how to access a psychologist to support people with diabetes. You don’t need to have seen a psychologist before to participate. The resource will be produced by the NDSS, and the survey is being conducted by the ACBRD.

It won’t take you long, and if you participate, you will be reimbursed for your time. You can access all the details, including who to contact if you would like more information, by clicking on the image below.

Click here to participate!

Diabetes is always going to be about the mind as much as it is about the body, and that means we need to be supported by health professionals who understand that. Help to shape the information that might just get people starting to understand just how much #DiabetesPsychologyMatters.

Today, my social media feeds are full of this screaming headline:

(Click for article)

As soon as I saw this, I threw my phone away from me and put my head back under the doona. Aren’t Fridays meant to be about celebrating a week well done and looking forward to the weekend?

Instead, I woke to far too many notifications about diabetes and death – words I really don’t like to see together, especially not so early in the morning.  Fortified with coffee, I took a deep breath and in I went, reading the article from top to bottom.

I’ve had a knot in the pit of my stomach all week. It moved in and made itself comfortable when the Australian PM started talking about easing lockdown restrictions. I’ve spent the last few days trying to work out how I can manage this anxiety in a sensible way, and not do what I really want, which is to build a cellar under our house, stock it with coffee, prosecco and Nutella, and move in there until sometime in 2030.

This article and the subsequent commentary twisted that knot tighter and pushed it in deeper. ‘I live here now,’ it seemed to be saying. And then added, ‘Get better WIFI; it’s patchy in here.’

The fact that the article raises more questions than it actually answers hasn’t helped. More details – details that may help to better understand exactly what is going on – won’t be published until next week. And so, without enough content to provide explanations, advice and information that might help PWD feel that perhaps it’s not all hopeless. Instead, The Guardian offered some throw-away lines about the associations and causes of type 1 and type 2 diabetes:

‘NHS England’s breakdown, published for the first time on Thursday, did not specify how many of the 5,873 diabetics who died had type 1 diabetes, an autoimmune condition not related to lifestyle, and type 2 diabetes, which is closely linked to being overweight. Fuller details will be published in an article in a medical journal next week.’

This just seems like an opportunity for people to appease people with type 1 diabetes, and point the finger and further stigmatise people with type 2 diabetes, instead of acknowledging that people with ALL types of diabetes might possibly find this news confronting. What is the relevance here to being overweight? If there is a correlation, please let us know and does it impact people with type 1 diabetes who are also overweight?

I am not for a moment saying that this sort of information should be hidden away or swept under the carpet. Of course, I want to understand how diabetes and COVID-19 interact. But there has to be a better way to get information to the masses without adding to the anxiety and worry. And definitely in a way that doesn’t sensationalise, point fingers and add to social stigma.

The article goes on to highlight the link between Alzheimer’s disease and deaths due to COVID-19, and as I read the quote from Alzheimer’s Research UK’s director of policy and public affairs, Samantha Benham-Hermetz, I wanted to reach into my MacBook and give her a metaphoric, and therefore socially distant, hug. She said:

‘This shocking news will no doubt bring even more worry and fear to people affected by dementia and their loved ones, during an already challenging time.’

I know that I and so many of my friends living with diabetes, and their loved ones, have been feeling worried and scared since this all started, and this article has the potential to add a lot more. The fact that this response was acknowledged out loud (and I think it’s fair to say that people affected by diabetes would be feeling the same as those affected by dementia) made me feel so grateful and heard.

Statistics are statistics, and data are important; I know that. But sharing data with the masses only works if it is done effectively and communicated in a way that doesn’t leave people feeling hopeless, but rather empowers us to make decisions that contribute to minimising risk.

My heart breaks for my friends with type 2 diabetes, and their families, who not only have to digest this headline and information, but also need to consider how the cavalier and simplistic definition of type 2 diabetes will now be interpreted by the general population who already are so quick to blame and stigmatise.

I live with diabetes, and I understand that I am high risk of complications, and so it seems, death if I get COVID-19. But mostly, more than anything else, I am a person trying to make sense of all of this and stay safe, healthy and sane – just like everyone else.


P.S. Hey – Guardian UK – I fixed this para for you:

‘NHS England’s breakdown, published for the first time on Thursday, did not specify the type of diabetes with which the 5,873 people who died were diagnosed. Fuller details will be published in an article in a medical journal next week.’

Yesterday, my little vlog touching on how I was feeling about re-entry into some aspects of real life, and the incremental reduction of restrictions was just a few thoughts that I wanted to talk about.

Today, as we’re learning and seeing more about what we have in store for the coming weeks, that low-level anxiety I mused about, has somehow manifested into a monster.

I think that my overall nervousness and anxiety about COVID-19 has been managed and manageable (albeit with an occasional meltdown). Perhaps that is because I started limiting my interactions early, working from home before lockdowns were announced. I was ahead of the curve (bloody curves – it’s all about curves!) when it came to minimising contact and outings. In fact, after I got back from Madrid back at the end of February, social engagements and general being out and about were really quite scarce.

This sense of control seemed to really help me. I felt confident that I was doing all I could to reduce my risk significantly. And then, once the restrictions were announced, it wasn’t just up to me to control my environment – it was being controlled for me. I didn’t need to worry so much about what Aaron and the kid were being exposed to because they were home. My limited exposure became theirs, and that just made me feel a whole lot better.

We didn’t completely isolate. But we made very deliberate choices about what we would do. As I mentioned in yesterday’s vlog, our local café has a service window to order and collect coffee. I felt safe getting my daily caffeine hit because I could remain safely distant from others and not need to touch door handles (or anything else other than a takeaway coffee cup) or breathe the same indoor air as strangers! When that café had a couple of well-deserved days off for their staff, we went to another one nearby. Once. I walked in and there were too many people inside, standing too close, talking too much. I ordered and waited for my coffee outside (why wasn’t everyone doing that?). And didn’t return.

Visits to the supermarket have been sporadic with my spidey senses on high alert. I’m so conscious of how close other people are, what they have touched and what I touched, what they are doing. I get in and out as fast as I can.

This has all become the norm and I don’t know how to move forward. I don’t know what the baby steps look like that would make me feel comfortable. We still have another two weeks before schools starts to return and our little cocoon is compromised by things outside our control. Yesterday, the kid asked me if it would be okay for her to go back to school once that was announced and would I be concerned because

I really hate feeling vulnerable. And that is exactly how I feel right now.

And torn. I feel torn. I miss my family and friends. I am desperate to be able to get back out and be around them and just not worry. But equally… I don’t know where they’ve been! I don’t trust people – which is a terrible thing to say…

So, what is it? Why do I feel this way? I know I’m not alone. I’ve spoken to some of my friends with diabetes from across the globe and many are saying the same thing. Maybe it’s all that talk that was so, so prominent at the beginning of the outbreak, and has continued as a whisper throughout it about high risk populations. While it made me feel overwhelmed at the beginning, now it is actually scaring me. That vulnerability is completely out of my control and combined with less control over my environment, I feel as though I am spiralling.

I know that I can’t stay all cosied up in my home forever more. I know that my family needs to get back out there; that I need to get back out there. But it is going to take a lot before I feel ready. And even more before I feel comfortable.

Actual insight into my thought stream right now from this The New Yorker cartoon. (Click for source)

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