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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)
So, today I had a moment and completely lost it. Tears – big, fat tears – sobbing and ugly, snotty crying. I didn’t even try to hide it, which is what I would usually do. There’s no hiding anymore now that we are all living in confined spaces and pretty much on top of each other all the time. (Sorry to the neighbours if they heard too. Inner-city living means not much space between house boundaries…)
I felt a lot better afterwards. Lighter and less overwhelmed. I realised that being all peppy and positive was weighing me down – perhaps that annoying Pollyanna-ish exterior was becoming like an armour.
I really try to not do the whole ‘what if’ stuff. This was something that I worked on for a long time with my psychologist. Catastrophising diabetes isn’t a great idea at the best of times. Adding a pandemic to the ruinous thinking isn’t especially fun.
It’s not surprising that people with diabetes are talking more about how our mental health is faring in the current situation. Living with a life-long condition that is so demanding and has the ability to mess with our minds in the most insidious way already makes us susceptible to feeling distressed. Now, it feels like that has been turned up to eleven.
I’m trying to remember how I learnt to move from thinking ‘what if <insert whichever scenario was terrifying me at that moment>’ to ‘what if it never happens’. It took me a long time to understand how to do that, with varying levels of success. There were always scenarios that made me feel extra level anxious, and it was a struggle to try to be rational. I found that by allowing myself to think about the most worrying, scary and uncertain things for a set amount of time – giving permission, I guess, to the worry and concern – I could then move on.
It turns out that pandemics bring out the catastrophising. The end-of-days thinking is not especially good for one’s already stressed mental health. Thinking about the things that are happening or that could happen is hard. Hard and scary and terrifying.
This week, I’ve kept coming back to how the Diabetes MILES study showed that the number one problem area for people who participated in the study was worrying about the future and development of diabetes-related complications. There is so much fear of the unknown in diabetes. We just don’t know how it will all play out. We do what we can, we assess and try to minimise risk, we do the best we can with the situation we are in. But we don’t really know what is around the corner.
COVID-19 is that all over again. But with diabetes thrown in for good measure.
Today, I gave permission for the worry and concern to come out because pushing it away wasn’t working. It flooded over me and weighed me down. And then I allowed the tears and the sobs. I didn’t try to stop it, I didn’t try to hide it away. And then…then I could breathe again, and work on the things that help me feel lighter.
So, I’m breathing so deeply. I’m standing in the sunshine. I’m watching our littlest dog run around in circles because she (still) hasn’t realised that she’s not a new puppy anymore. I’m listening to my husband play music. I’m listening to my kid’s laughter because it’s my favourite sound.
And I’m still muttering to myself that this too shall pass. Not yet, and maybe not for some time, but it will. This. Too. Shall. Pass.
Burnout. It’s absolutely on my mind at the moment. I am burnt out with diabetes; I’m burnt out with advocacy. And I am burnt out with coronavirus – especially the bit where everything I see and read keeps mentioning that it’s all really just mild…except for elderly people and those with chronic health conditions.
Oh yeah – that’s me. The chronic health condition bit, although I am feeling old – so old – at the moment, too.
(I’m also burnt out at my husband breaking into song every time he hears the words ‘COVID-19’, and if I never hear the song Come On Eileen again it will be too soon. But I digress…)
I’m not afraid of coronavirus. I’m taking the precautions that have been recommended. I’ve not panicked or stockpiled anything, and I’m still going into work. Probably the way I have been most impacted is that I will be in Melbourne next week instead of Berlin, and again at the beginning of April when I was meant to be in Copenhagen. As with most people, I’ve been grounded and probably won’t be seeing the inside of an airport for a few months. It’s a small price to pay to stop the virus’ spread. (Alas, reaching Qantas Platinum One status will remain elusive for another year.)
All in all, I’m pretty calm and rational about what I need to do personally and understand how our own personal actions can and will contribute to the wellbeing of others. At least, I have been feeling calm and rational…
In the last couple of days, I’ve noticed that I am starting to tense up whenever coronavirus is mentioned, and I know that I have moved from just taking any information in, to feeling increasing levels of concern. I get that my anxiety has been heightened lately – due to completely unrelated reasons – and that is now being reflected in how I am responding to coronavirus. I am tangibly feeling upset when I hear stories of people with chronic health conditions being diagnosed with it, and the other day, I found that I was fighting back tears as, yet again, some politician somewhere promised that people who were diagnosed with the virus would most likely be okay – as long as they were not old or chronically ill.
I don’t like diabetes making me feel defenceless, and yet, here I am, feeling highly exposed and vulnerable.
Thankfully, reporting has seemed to be a little more sensitive in recent days and I’m feeling less disposable, or perhaps I was just getting better at avoiding anything that was making me seem that way. At least, that was the case until I started reading accounts out of Italy about how overwhelmed their health system has become. I can’t even begin to imagine the distress HCPs must be feeling at needing to determine who gets treatment and who doesn’t – in many cases deciding who lives and dies. If the situation in Italy was to happen here, would I be one of those left to die because of my diabetes?
These thoughts are starting to keep me awake at night.
So today, I’m thinking about my mental health and how I can better look after it in light of the way I am starting to feel. The last thing I want is to become completely overwhelmed. I need to keep being rational and calm and sensible – not panicky and unable to think straight.
I’m being very selective about what I am reading. I don’t watch or read tabloid news ever, and I’ve actually blocked accounts on my socials so that I don’t accidentally see their scaremongering on my feeds. The balance between informing and alarming people seems to be a fine line that many don’t seem to understand.
Instead, I’m looking at the sensible and smart advice, where evidence is king, and content is based on fact. Diabetes Australia (disclosure: I work there) has been providing regular updates for Aussies with diabetes, including information from the Department of Health which reassuringly confirmed that there are no shortages or supply issues with insulin, diabetes drugs or NDSS supplies. (If you’re elsewhere, check local diabetes org sites and if there is nothing there, reach out and ask them to get onto it!)
Children with Diabetes, Diatribe and Beyond Type 1 have been doing a stellar job providing smart information and avoided any panic and alarm. I am so grateful that when I see a post from one of them on my feed because they calm, rather than distress. I also love how they are acknowledging that this is tough for those of us with diabetes and that feeling overwhelmed is understandable. I’m holding on to that.
I’m also doing a lot of risk assessment. We’re not in lockdown here in Australia, so I am still going into work for the main part. Perhaps if I didn’t drive in or have my own office once I get there, I’d reconsider working from home for the next couple of weeks, but honestly, being around people is therapeutic sometimes and keeps those dark thoughts at bay.
As ever, trying to find a balance is essential and I think about that whenever I am about to walk out the door. Minimising contact with the outside world is hard and as social isolation is one of the things being recommended, I think about friends and family living alone. Online communities work to reduce isolation, and I hope that people who need to connect with others are able to do so.
These are difficult times and finding a way through will be different for everyone. As much as I don’t understand people stockpiling loo paper (really, I’m confused), I don’t want to blame or judge anyone who is doing whatever they can to try to feel some control over a situation with so much that is unknown.
Living with diabetes means we do have extra things to think about and they can make us feel overcome: this is perfectly normal and okay (as is feeling completely relaxed about everything, by the way!). I seem to be muttering to myself ‘This too shall pass’ a lot. Because it will.
But in the meantime, to my friends and peers with diabetes, be kind and gentle to yourself and each other. That always goes a long way to helping with emotional wellbeing.
Diabetes burnout is real, and it takes many different forms. In the past, I have been burnt out to the point of a complete inability to do any sort of diabetes task. Other times, I have just muddled along with low-level haziness and apathy with and at my diabetes. Sometime burnout has been caused by such a deep hatred of diabetes that the very idea of actually managing it is impossible. Focusing on diabetes after a miscarriage ridiculously felt like a betrayal to the baby I’d been unable to keep. My broken body had not been able to carry a baby, and there I was still tending to it – to the very part of it that I held responsible for the loss.
Today, I am burnt out but in ways that are different and if there was such a thing as a burnout spectrum, I wouldn’t think that I am at the really serious pointy end. I suspect part of that is that those diabetes tasks that once seemed impossible during periods of debilitating burnout are far fewer these days. Having to refill a cartridge and change a canula every three days, calibrate a CGM occasionally, and change a sensor even less occasionally is manageable for me even while I am feeling the way I am right now.
The bottom line is that at the moment, I don’t want to do diabetes and that is a big shift from where I have been since using Loop. It is also a big shift from where I usually am after attending a diabetes conferences and being surrounded by friends. This usually gives me a kick of motivation and focus, allowing me to put in a little more effort which generally yields pleasing results.
Instead, I am a mere 48 hours back from one of those occasions of peer support and I am staring at diabetes with that deep-seated hatred that feels unfamiliar these days. This has not sprung on me all of a sudden. It’s been brewing and fermenting over the last few months. It’s a combination of diabetes being diabetes and some advocacy burnout that has hurt me in ways I never imagined possible. I’ve not felt comfortable mentioning it because what the hell do I have to be burnt out from? My automated insulin delivery device that does most of the heavy lifting for me? The CGM on my arm that barely beeps at me? The support of friends and family? The ease of access to any sort of health professional I need? My diabetes isn’t first world diabetes, it’s first class diabetes so why would I possible be feeling crap about it all? (Oh good, let’s add some guilt to the way I’m feeling too then, shall we?)
And I’ve not felt comfortable mentioning it because, apparently, I am so self-confident and resilient that these things aren’t meant to happen to me. Or rather, that is the perception that a number of people have felt the need to share they have of me. (If anyone can locate that resilience, I’d really like some of it back. It is AWOL in the same way my beta cells are, and I am finding this all rather inconvenient.)
This brand of burnout has been joined by something new. I have had a couple of panic attacks over the last few weeks and the repercussion of those has been to suddenly feel very wary about my ability to make decisions about diabetes – my own and how I read things in the wider diabetes world. I am back to second guessing myself – a behaviour that I really had managed to positively change thanks to devices that I trust implicitly. As it turns out, those devices are smarter than me and as much as I was a maths whizz at school, I am no match for an algorithm that knows my diabetes better than I do.
But the bits I need to do? I’m misfiring left, right and centre.
I stared at a low glucose level on my Loop for two hours yesterday, unable to process exactly what I needed to do to deal with it. The low was entirely my fault. I’d forgotten to change the time on my pump when I arrived back into Melbourne because I was dealing with a more pressing matter – namely, staying out of quarantine. (Airport panic attack led to me trying to remember how to breathe properly rather than making that time zone change. I felt it better I focus my efforts on minimising the effects of said panic attack in an endeavour to keep away staff on heightened alert because of a global respiratory virus epidemic.)
I did a sensor change yesterday morning and it bled all over the place and felt terribly painful, and instead of just ripping it out and starting again, I wept – at the blood, the waste of a thrown-out sensor. And having read not long ago someone refer to CGMs as non-invasive.
So here I am. Burnt out, overwhelmed and feeling broken into little pieces. Oh, and terrified to write about it because I am finding corners of the world that I usually turn to when I am feeling like this not especially kind at the moment. (Unlike other times when my tribe has been amazing as I’ve navigated the tricky waters of the burnout continuum.) But I’m sharing anyway, because it’s what I do, and my mess is my mess and this blog is my blog and so somehow this feels the right place to dump the chaos and clutter I am trying to tidy up and make sense of.
Burnout is real. This feels hard and sad and more than a little scary. And it’s a reminder that no matter how well we think we are doing with diabetes – and no matter how we seem to be on top of things to others – there is always the chance that it overcomes us. That seems just so terribly, terribly unfair.
What would you change about your diabetes diagnosis?
Mine was almost 22 years ago, but much is still fresh in my mind. While there is a lot I am eternally grateful for, such as the speed and accuracy of diagnosis, and the way I was easily able to access specialist care, there are things that I wish were different.
One of those things is the line-up of HCPs that was offered to me. Making sure I knew the basics of daily diabetes management, the importance of knowing how many carbs I was eating, and the impact of activity, were, of course, critically important to learn before I was sent on my way. But diabetes was presented to me with this very one-dimensional approach. It was all about the magic carb/insulin/activity equation. Get that right and all would be relatively simple.
I had the relevant HCPs that could help me get that equation right – the endocrinologist, the diabetes educator and the dietitian. This was the holy trinity of diabetes care, I was told. This was the team that had diabetes knowledge to share.
And perhaps, if I’d been able to keep diabetes all about numbers, that trio would have been enough. Alas, it didn’t take long for this new-to-me medical condition to move to my head. No one mentioned the anxiety and fear that started to accompany the distress that was due to not being able to meet any of the targets I’d been set, and feeling overwhelmed by just how much diabetes there was to do. Or the disordered eating that may creep into my thinking because of this sudden focus on food in a different way. Or the crippling fear of complications that was keeping me awake at night.
I wish a version of these words had been said to me: ‘Diabetes is not easy. You can do this, but it is not easy. But we are here to help you. And endocrinologist and educator can help you with the practical side of diabetes. Food questions can go through your dietitian. We have an arsenal of allied health professionals to think about when it comes to doing all we can to reduce the risk of diabetes-related complications. And if you ever feel that you are becoming overwhelmed or anxious or distressed, if you ever want someone to talk with someone about how you are feeling to work through what’s going on outside the clinical aspects of diabetes, we have someone here for that too. It is perfectly, perfectly normal for you to feel all of those things. It is also perfectly normal for you to not feel them! We can help with whatever you need.’
Planting that seed would have made those first few years – those years before I found an endocrinologist who did say those words to me – so very, very different. I may not have understood why I might need, or rather want, to see a psychologist straight away – I didn’t understand what diabetes was, let alone how it was going to impact on my emotional wellbeing – but I wish that I had known from the very beginning that I had easy access to a one if and when I needed it. And that it was perfectly understandable if I did.
While I believe that GPs, endocrinologists and educators all have a role to play in talking about emotional wellbeing, they are not experts in this area. Having our diabetes HCPs acknowledge the high mental burden diabetes places on us is reassuring, but they may not be equipped with the strategies to help us lighten that load. But a psychologist can – especially one that works with people living with diabetes or other chronic health conditions. Plus, I repeatedly see HCPs say that they don’t have time as it is to ask about mental wellbeing, because there is already so much to do in the allotted appointment time.
Here’s the thing: so, so many people with diabetes are not reaching targets. Now, while I don’t agree with measuring diabetes success on numbers, that is still the way that it is done in many settings. And with that in mind, so many of us are above recommended glucose levels and our A1cs don’t even closely resemble what guidelines tell us to aim for. Clearly what we are doing now isn’t working, in fact, I’ll be so bold as to suggest that the current standard HCP line up is not necessarily best for PWD. Would adding a psychologist to the mix help? Would the expertise a psychologist can offer to help us learn how to address behaviour change, distress, anxiety result in not only feeling better about diabetes overall, but also improve those other measures?
I am not for a second suggesting that everyone with diabetes should have to see a psychologist. I don’t think that PWD should have to see any HCP they don’t believe is helping. But I do believe that we should be able to access a psychologist as easily and readily as we can any other diabetes HCP. Psychologists should be integral in multidisciplinary teams in diabetes clinics in the same way that educators, dietitians and endocrinologists are.
In my experience, it wasn’t until I started working with a psychologist that I got any benefit from seeing the rest of the diabetes team. Go check out the hashtag #DiabetesPsychologyMatters for some more commentary on this from PWD, psychologists and clinicians. It’s already gaining momentum, but I think it’s time that it really took off…
Each year, as we stop, look back and take stock, the reason that we are feeling so tired becomes apparent. This year is no different for me; my work travel calendar was the most intense it has ever been, with nine long haul trips, some for only a day or two. Combined with regular domestic travel, I can truly say that I have seen the inside of airports far too much. I stopped adding up the trips I did once I passed 100 walks down airbridges to board planes because it was making me weepy.
But on top of the usual exhaustion this year, there seems to be an extra element of fatigue that goes beyond what I’ve experienced before.
But first, let’s talk highlights, because there have been many of them.
The year kicked off with Spare A Rose and whoa, did we start the year with a bang! With the true philosophy of SaR at the forefront (an initiative for the community, by the community), we not only reached our rather audacious target, we smashed it! A cheeky and opportunistic little extra push saw a smiling Grumpy Pumper unleashed to the whole world for just a moment The DOC didn’t break, but the final tally of for the campaign meant that 939 kids in under-resourced countries would be receiving insulin for a year. Amazing!
My favourite issue, #LanguageMatters, only went from strength to strength, and the publication of this piece in BMJ, followed by this podcast, was a brilliant way to get it outside of the diabetes echo chamber. The importance of language featured on the programs of major conferences such as ADA and #IDF2019 with stellar panels speaking about why it really does matter.
My diabetes turned 21 and tied up in all the emotion of that, my pancreas’ performance review didn’t go all that well. Maybe next year? (Unlikely.)
Possibly the most exciting, heart-warming, rewarding and humbling thing I did this year was co-facilitate a workshop in Manila with some of the most dynamic, compassionate and enthusiastic young diabetes advocates I have ever met. I’m thrilled have had a chance to catch up with a couple of the people from this meeting and can see the wonderful work they are doing in more than trying circumstances.
Peer support was never far away. One of my favourite digital campaigns came from Diabetes Australia (remember – I work there so consider my bias) with our The Lowdown campaign. What a brilliant way to showcase how a digital campaign can reach and connect people from all over the world, and encourage them to safely speak about a topic that doesn’t seem to get anywhere enough coverage. I spoke about the campaign’s success in a number of places this year.
My own personal peer support experiences happened all around the globe at conferences, advisory board meetings and other opportunities to see friends and colleagues with diabetes. These moments ground me and help me make sense of what I am seeing and hearing, and are critical for keeping me balanced.
A special shout out to these two peers and dear, dear friends: Bastian and Grumps. We saw each other an inordinate number of times this year, literally all over the globe, travelling on planes, trains and automobiles for our #DiabetesOnTour. I do think we should launch a calendar of the 2020 pics. (Admittedly, we may be the only ones remotely interested in that idea.) When I talk about my diabetes tribe, it’s friends like these two. We’ve celebrated through some pretty amazing things this year, stood up to elevate the lived experience over and over, and also counselled each other through the tough bits. We’ve held post-mortems of long days, sitting in hotel foyers and bars, trying to make sense of what has happened, working out how to always improve, and plotting and planning more and more and more. I am so grateful to them for being the scaffolding holding me up when I’m away from home and feeling overwhelmed.
So, now the reason for that elevated exhaustion…
When I first wrote about advocacy burnout back in January this year, I had no idea at the time that it would set the scene for a difficult and sometimes troubling theme for the year. I get tired and overcome at times throughout the year, but 2019 was different and I’m not really sure why.
There were moments this year where I did honestly wonder how much more energy I have to stand up over and over again to a lot of what I was seeing. I don’t like using war and battle analogies in diabetes, but I did feel that I was fighting a lot of the time. Diabetes advocacy is a tough gig to begin with. Adding burnout on top of it makes it seem shattering.
Being attacked by HCPs for daring to voice my thoughts and challenge their behaviour, or getting it from certain, more confrontational parts of the diabetes community, or having industry reps tell me I don’t know what I’m talking about for daring to suggest that maybe their lame attempts to simulate diabetes in gameshow-style gimmicks at conferences could be better directed at actually engaging and listening to PWD all added up.
Or perhaps it was the repeated examples of ‘diabetes for laughs’…and realising that we are a long way away from HCPs truly being allies in our daily encounters with stigma.
Or perhaps it was feeling that we needed to justify just how important the #LanguageMatters movement, and the decade of work we’ve done really is. I can’t even begin to tell you how upsetting this little incident was.
It added up and several times I’ve felt overcome. I feel like that today. Which is disappointing because on measure, the highlights, the positives and the amazing community should overshadow the negative encounters.
And that is why I’m taking a break from Diabetogenic. I need some time away from feeling as though I want to analyse what is going on and comment on it. I have a wonderful holiday planned with my gorgeous family where we will see friends and wander wintery streets, rugged up in pompom hats. And then, will warm up once back in Australia to finish recharging my seriously diminished batteries, ready for a new year that’s already shaping up to be so, so busy.
Until then, I hope you have a wonderful holiday season, celebrating however you see fit. Thanks for popping by. And I’ll see you in 2020, clapping my hands and raring to go!
My first endocrinologist was a really nice man. He was very kind in the way that he acknowledged that I was dealing with something quite scary – a new diagnosis of type 1 diabetes.
I remember he was nice. In fact, when people asked me what my new doctor was like, it is highly likely that I actually used that word to describe him.
What I remember more was the way that he told me about diabetes-related complications, and the way that he told me that if I didn’t look after myself, and follow his instructions to the letter, that I would get those complications. If I was a good girl and did as I was told, I would be right. If I didn’t, every one of those terrifying, horrible, distressing complications would occur and it would be my fault.
Now, he didn’t say this in an ‘un-nice’ way; he wasn’t mean, he wasn’t cruel, he didn’t yell. He was saying it as if it was an absolute, and I quickly came to understand that being compliant was what was expected, and that there was a good and bad way to behave in diabetes, and that resulted in good and bad numbers. If I did what he said, I was good; if I didn’t, I was bad. And if I was bad, terrible things would happen and I would have no one to blame but myself.
That was twenty-one and a half years ago, and I can still hear those words in my head. The language he used set me on a course of not coping with my diagnosis and feeling intense fear about my future – a fear that sometimes paralysed me into inaction.
This week, there has been discussion on Twitter about what the #LanguageMatters movement is all about. It started with this tweet from a diabetes consultant in the UK, which suggests that it is ‘..mostly about being nice…’.
Eight years ago, when Diabetes Australia launched the first language position statement, the response from many was that this was not an important issue and that perhaps we should put our efforts into other things; things that matter. This was seen as a little bit of fluff that was a waste of time. It’s political correctness gone mad, was the reaction from many.
We’ve become smarter at showing the evidence to support just how destructive words and language can be. We hear stories from people who explain how damaging language resulted in them not seeking help when needed, and how the fear of being blamed kept them away from their healthcare team. We can show that diabetes gets fewer research dollars; that it’s harder to get people to put their hands in their pockets to donate to a diabetes charity, and that the general community does not understand just how serious diabetes is.
The timing of things is interesting, and it seems that last night someone on the TV show The Great British Bake Off referred to a dish as ‘diabetes on a plate’. The host’s reference to the sugary confection in that way wasn’t about him not being nice. It was about him using a phrase that has been thrown around by many for years, because it is accepted that diabetes is something to make fun of.
Now sure, the way people responded to this incident could be termed as nice and not nice. Nice would be ‘Please don’t refer to my health condition like that’; not nice would be ‘Don’t be an arse’. Obviously, I lean towards the latter. (Also, not especially nice is using an example like this to explain the different types of diabetes, because it is not relevant to the discussion and only adds stigma to type 2 diabetes. Don’t do that!)
As I read the tweets responding to this tired ‘joke’ from people in the diabetes community, what I saw was not people urging the TV host to be nice. It was for him to understand the seriousness of diabetes, to stop shaming people with diabetes, to not fuel the misconception that sugar causes diabetes, to not make diabetes a punchline.
People make diabetes ‘jokes’ because the words and language used around diabetes for years has given them permission to do so. And with that, attitudes were formed and the construct that diabetes is self-inflicted and free game for comedians and TV hosts became accepted.
And that’s where we are now and what we have to undo.
Perhaps part of the problem is that we don’t have an ‘ist’ or ‘ism’ word that we can attach to the language matters movement. We understand that when we challenge racist or sexist conduct, we are not asking people to simply ‘be nice’. We are trying to make a culture shift away from such damaging attitudes and to change behaviours. When I call out a bloke for making a sexist comment, I’m asking him to reconsider the way he thinks about women, change his behaviour and be respectful. I’m not asking him to ‘be nice’. I’m asking him to stop being sexist.
When someone makes a comment about someone based on the colour of their skin or the country they were born, we don’t dismiss it as them not being nice. We (rightly) expect them to stop that rhetoric because it is wrong and no acceptable.
So, I’m making up a word (and I hate made up words…). If you use words and language that judges, shames, blames, and stigmatises people with diabetes, you are being diabetesist. Diabetesism is not okay and should not be tolerated, and we need to challenge people behaving in that way. Perfectly nice people could still be diabetesist; their attitudes are long-held and seemingly socially acceptable. It’s what they have heard all their lives. We need them to stop doing that.
Here’s the thing: I don’t actually consider myself as being a particularly nice person a lot of the time. Nice people are agreeable, and don’t challenge others or their ideas; they accept them. They don’t call people out on Twitter. They’re not the person who rocks the boat. I am the boat rocker, and I do that because I believe that there are institutional, systematic problems that need to be changed in diabetes and diabetes care, and one of those is the way that the language used around diabetes.
So, back to where this all began and this tweet. I agree that berating HCPs is not the way to get the message through. #LanguageMatters is not only looking at HCPs attitudes and behaviours, anyway. My strongest criticism has been aimed squarely at the media and industry. I also believe that it works best when all stakeholders are involved.
But while I accept that there are different approaches, I don’t accept – and really don’t appreciate – that all the work, the research, the education and the efforts about this issue can be distilled into the concept of good manners and niceness.
I also believe in taking a harder line. That doesn’t mean haranguing or being aggressive. But it does mean understanding that there is a (real or perceived) power imbalance in healthcare, and those with influence should be held to account when it comes to the way they speak to and about people with diabetes. It means calling out HCPs and researchers when they stand up at conferences use language that hurts us by reinforcing wrong attitudes; correcting the media when they get it wrong, and calling out industry when their marketing teams misfire.
And I also believe that this is personal. Living with diabetes is not a bit of ‘fun stuff’ or something that we chose to do. It is incredibly personal for me and every single person with diabetes who has been made to feel not enough, or blamed or shamed, or judged or mocked due to beliefs about diabetes – beliefs that have been formed and accepted over time because of the language and attitudes about our health condition. The concepts of non-compliance, of good and bad numbers, of ‘bringing this on myself’, of ‘diabetes on a plate’, of grading A1cs have all been thrown at me, and affected me in ways, varying from feeling a little annoyed right through to deciding diabetes care was an exercise in futility so I was simply not going to bother anymore.
That is why #LanguageMatters and I would ask – and urge – everyone working in this space to listen to those of us living with diabetes, hear us. And sit down and learn. Sure, we can all be nice, because being nice is a good thing to aim for (and I promise that I will endeavour to do better there, too), but accept that language matters much, much, much more than that.
Diabetogenic 