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Advocacy is a slow burn. I say those words every day. Usually multiple times. I say it to people with diabetes who are interested in getting into advocacy, not to scare them off, but so they understand that things take time. I say it to established advocates. I say it to people I work with. I say it to people in the diabetes world who want to know why it takes so long for change to happen. I say it to healthcare professionals I’m working with to change policy. I mutter it to myself as a mantra.
Slow. Burn.
But then, there are moments where there is an ignition, and you realise that the slow burn is moving from being nothing more than smouldering embers into something more. And when that happens I can’t wipe the smile of my face and I start jumping up and down. Which is what I was doing in my study at home at 2am, desperately trying to make as little noise as possible so as not to wake my husband and daughter who were sounds asleep in other rooms off the corridor.
The World Health Organisation conducted the first of its two focus group sessions for people with diabetes yesterday (or rather for me, early this morning), and I was honoured to be part of the facilitating team for this event. In the planning for the questions that would be discussed in the small break out groups, the WHO team had gone to great pains to workshop the language in the questions so they were presented in a way that would encourage the most discussion possible. That was the start of those embers being stoked.
I think that the attention to how we framed the discussion points meant that people thought about their responses differently.
The topics last night were about barriers to access of essential diabetes drugs, healthcare and technology. Of course, issues including affordability, health professional workforce, ongoing training and education were highlighted. These are often the most significant barrier that needs to be addressed.
But the discussion went beyond this, and time and time again, people identified stigma and misconceptions about diabetes as a significant barrier to people not being able to get the best for their diabetes. It certainly wasn’t me who mentioned language (at least not first), but communication and language were highlighted as points contributing to that stigma.
This recurring theme came from people from across the globe. It was mentioned as a reason for social exclusion as well as workplace discrimination. There was acknowledgement that perceptions of diabetes as being all about personal responsibility has affected how policy makers as well as community responds to diabetes – how serious they see the condition.
In the discussion about diabetes-related complications, the overall language had been changed from ‘prevention’ to ‘risk reduction’ and this was recognised in many of the discussions as a far better way to frame conversations and education about complications. This isn’t new – it was a recurring theme when a focus in the DOC was the hashtag #TalkAboutComplications. I wrote and co-wrote several articles about it, including this piece I co-authored with the Grumpy Pumper for BMJ.
The direction the discussions took were a revelation. No. It was a revolution!
So often at other events and in online debates when language and communication has been raised, conversation has been stalled by people pushing agendas about wanting to be called ‘diabetic’, as if this is the first and only issue that needs to be resolved. That didn’t even come up last night because the people who were highlighting the implications of language understood that when you look at the issues strategically and at a higher level, those details are not what matters.
What matters is looking at Communication with a capital C and understanding its influence. It elevated the discussion so far above the ‘it’s political correctness and nothing more’ that it would have been ridiculous to drag the discussion back to that level.
For years, there has been push back regarding communication because people have not stood back and looked at impact. That has changed.
When I wrote this four years ago highlighting that diabetes’ image problem diabetes – all those misconceptions and wrong ideas about the condition – has led to fewer research dollars, less understanding and compassion from the community, more blame and shame levelled at individuals … it was to emphasise that the repercussions have been significant.
Thankfully as more people started stepping back and considering big picture – health systems, policy, community education – I could see that there were shifts as some people stopped talking about political correctness and started asking what needed to be done to really move the needle. It seems that’s where the very, vast majority of people were during the WHO focus group
This diabetes #LanguageMatters movement stands on the shoulders not of the people who have elevated the issue in the last ten years (although those contributions have been massive!) or the position papers and guidelines that have been published (although those have certainly aided the discussion in research and HCP spaces), but rather, the people in the diabetes community who, for years, knew that language and communication was a driving factor in our care. People like those in the (Zoom) room yesterday.
Looking for more on #LanguageMatters
Click here for a collection of posts on Diabetogenic.
The Diabetes Australia Language Position Statement (Disclosure: I work at Diabetes Australia and am a co-author on this statement.)
The Diabetes Language Matters website which brings together much of the work that has been done globally on this issue. (Shout out to diabetes advocate Jazz Sethi for her work on this.)
DISCLOSURE
I was invited by the WHO Global Diabetes Compact team to be part of the facilitators at the Focus Group on Advancing the Lived Experience of People Living with Diabetes. I am happily volunteering my time.
Gosh, it’s been a hot minute since I last did one of these. The whole point of Interweb Jumble posts on Diabetogenic is to highlight anything that has caught my interest in the online diabetes world, write about initiatives I’ve been involved in, and, most importantly, to elevate the great work being done by others living with diabetes. Building folks up and promoting their amazing efforts has been at the heart of what I do, so I’m always happy to share what others are doing.
Grab a coffee, tea or shandy, (Don’t. Don’t grab a shandy), and read on.
Diabetes Chat
YES!! There is a new place to congregate online, in a different format, and with this one, you get to hear people’s voices. (Sorry to everyone who had to endure my 7am Aussie accent last Tuesday!). This is a new initiative that’s been set up by three DOC folks – Tom from the UK, and Chris and Sarah from the US, utilising a new feature on Twitter called Spaces. It’s a terrific way to host an online peer meeting, creating yet another time and place that is BY people with diabetes, FOR people with diabetes. There is a weekly guest who gets put through their paces with terrific questions from the hosts and those listening in, and an open mic chat time as well.
It’s super impressive to see people from all over the globe participating. It reminds me a little of the DSMA tweetchats which are very welcoming and open to all, regardless of where you live around the world.
Search #DiabetesChat on Twitter for more.
dStigmatize
The team at diaTribe has once again tapped into one of the important issues, and much spoken about topics in the diabetes community and developed a terrific new website addressing diabetes stigma. It’s called dStigmatize and you can find it here.
I’m delighted to see Diabetes Australia’s work on stigma and language highlighted so prominently on the site (disclosure: I work at Diabetes Australia and have been involved in this work), including the videos from last year’s Australian National Diabetes Week campaign, which have been viewed hundreds of thousands of times.
Seasons of…diagnosis
New research out of Finland asked if more people were diagnosed with type 1 diabetes during colder months. You can read the paper here.
And a discussion on Twitter about it here.
HypoRESOLVE podcast
The HypoRESOLVE comms team created a new podcast to showcase the incredible work of this researchers involved in the project, with a strong emphasis on how people with diabetes are involved in the project. I was delighted to host this podcast and speak with some truly remarkable clinicians and researchers as well as other people with diabetes who are on the projects Patient Advisory Committee. (Disclosure – I am on the HypoRESOLVE PAC. PAC members are now paid an honorarium for our time working on this project, however we were not at the time of recording or working on this podcast.)
Here is the most recent episode (on Spotify).
Better engagement with PWD = better services
Great paper from a team out of the UK looking at how connecting with the lived experience expertise of people with diabetes, health professionals and diabetes health services can improve service delivery.
One of the co-authors is one of the GBdoc OG, Laura (@Ninjabetic1 on Twitter), and it’s great to see her name back in the diabetes world, contributing to this important discussion.
And the DDA podcast…
The Danish Diabetes Academy developed a podcast out of their Winter School that featured Postdocs who had participated in the academy speaking with others in the diabetes world to discuss who academic researchers work to ensure their research reaches and benefits those they are researching. I was so honoured to be invited to be interviewed for their first episode and answered questions about how communication is important when engaging people with diabetes to be part of the research process. You can listen here.
Language Matters for Portuguese speaking friends with diabetes!
The latest in the Diabetes #LanguageMatters stable is this document out of Brazil. Always terrific to see more and more statements coming out, highlighting the importance of language and communication in diabetes.
Thinking of starting on an insulin pump?
If so, the awesome Grainne at Blood Sugar Trampoline has you covered with this post. It is truly one of the most measured pieces I’ve read about things to consider if you are on the path to starting an insulin pump. The gushiness and superlatives that many of us resort to when banging on about how much we love our pumps are replaced with sensible, and practical advice and suggestions. If this is where you’re thinking of taking your diabetes management, Grainne’s piece is a must read.
Who doesn’t want to come to ATTD!?
#dedoc° voices is back and heading to ATTD in April this year, and applications are still open if you would like to be considered as part of the program. Successful applicants will be granted access to the entire ATTD program, giving them an opportunity to share what they see and learn with their networks. Make your submission count – this is a competitive process and success is more likely for those who take the time to provide details of how they will be involved in the program. Details here.
(Disclosure: I am an advisor to the #dedoc° voices program. I do not receive any payment for this role.)
World Health Organisation
In March, the World Health Organisation, through the Global Diabetes Compact, is hosting a two-day focus group for people with lived experience of diabetes. If you’re interested in getting involved, there is an expression of interest process you can complete here.
Also from WHO is this survey which is asking people with diabetes how to improve messaging and communication. You only have until 28 Feb, so get onto it now! (Disclosure: I was a volunteer consultant in the development of this survey)
Massive kudos to the Global Diabetes Compact team who are doing an absolutely stellar job engaging with the community. Always so terrific to see!
A diabetes sea shanty…
You’re welcome.
(Follow @TypeWonDiabetes on Instagram here.)
People with diabetes and their involvement in research
An end of year delight was this article that I co-authored making it to publication. The article is about how to better involve people with health conditions in research (which really seems to be something I’ve been very focussed on recently!).
Spare a Rose – last push
February still has a last few days which means that Spare a Rose isn’t over yet. You can still donate and contribute to this year’s total and support people with diabetes in under-resourced countries through the Insulin for Life program.
It seems fitting that for my first post for the year, (happy 2022, friends!), I look at how diabetes #LanguageMatters is, (once again), colliding headfirst with COVID communications.
It’s the age of Omicron, and we are repeatedly, almost obsessively, reassured that this particular strain of concern of the virus we’re all completely sick of (and, for many, sick with) is mild. Mild. Mild. Mild.
And all I can think about is how damaging that word has been in diabetes communications, and, it seems, it’s quite problematic in COVID circles too.
Mild suggests that something is inconsequential; that it is minor; that it is easily resolved. Mild doesn’t consider the emotional toll and worry people might be feeling about being exposed to a virus that is spreading like wildfire.
When we talk about mild hypos in diabetes, we’re referring to those pesky hypos that are fixed with a few jellybeans and a couple of profanities. It’s a wham-bam-thank-you-ma’am low that is done and dusted in a few minutes. It’s a quickie.
Except anyone who lives with diabetes knows that is not necessarily the case. So-called mild hypos can be worrying and stressful and cause anxiety. They can impact on how people feel about their diabetes and confidence.
Calling them mild has meant that these types of hypos are dismissed, and seen as something that, as well as being easily resolved, can be easily prevented. That’s not how hypos work, and framing them that way can lead to people with diabetes being blamed for not doing what they should have to prevent them, or that they are not something that needs attention.
Talking about the effects of Omicron is important. It’s good to know that, in general, early results are showing that Omicron is causing less severe illness, despite being highly transmissible. But a mild dose of a serious virus that still has so little known about it isn’t unimportant. It may be less dangerous than previous strains, but it can still be serious.
There is a flow on effect to defining Omicron as mild. It can mean that it’s not being taken seriously, and people are, perhaps, not being as cautious as they could be. Anti-vaxxers are using this definition as ammunition to further shape and spread their unhinged views, and ignore simple public health efforts, such as wearing a mask and maintaining physical distance. I know this group doesn’t need any help in pushing back against evidence-based measures that clearly help stop the spread of contagious diseases, but I’ve seen them bleat with delight ‘OmiCrOn iS mILd’ as part of their deranged rants, because that’s what they keep seeing and hearing.
Sadly, calling something mild has led to lousy planning (some would say sheer incompetence) by the government and government agencies. It’s this planning that is needed to help people properly prepare and protect themselves and their community.
I wonder if we were to ask people what their stress levels are like as they can’t access rapid antigen tests, or can’t afford to pay for them if, by some miracle where the planets have aligned, they find somewhere that has a hidden stock somewhere. And how they’re feeling as supermarket shelves are emptying, lines for PCR tests thread around (many) blocks, and their workplaces are needing to close because so many people are home from Omicron.
I’m guessing if they were asked, the answer wouldn’t be ‘mildly stressed’. Nor would they necessarily rate the situation in which we find ourselves as ‘mildly inconvenient’.
Mild doesn’t mean insignificant. Anyone who waits for daily numbers and has seen hospitalisation, ICU and death rates climbing knows that. Families of people who are seriously ill, or who have died know that. People like me who have spent the last two years doing everything I can to protect myself because I’m so terrified about getting COVID know that.
Communication around COVID has been a disaster from the beginning. And two years on, it hasn’t improved. Because here we are: less than two weeks into the new year, and about a month into a new variant and it’s as though we haven’t learnt a bloody thing about how and why words matter when speaking about health.
It’s been a while since my last diabetes in the wild encounter. It makes sense. I’ve barely left my house for the last 20 months and I’ve not really been frequenting the places where I would usually have those happenstance meetings – cafés and airports. Gosh, remember airports? Remember the queuing and the waiting and the frustrations and the delays and the cancellations? Anyway, I digress…
It shouldn’t surprise me that it was a café that provided the setting for my accidental encounter with another person with diabetes. I was working away, happy to not be in my house, even happier that someone kept bringing me outstanding caffeine. Happiest because I knew that every single other person sitting there was fully vaccinated.
I was doing the sort of work I do best in a café – editing. I get into a zone, concentrate on the task, and just read and edit in a super-efficient and fixated way. I don’t get distracted by anyone around me, and the noise becomes a reassuring beat that I work to. I completely block out anything on around me.
Including the fall rate alert on my Dexcom app. Anyone who uses Dexcom knows that this is a particularly urgent, loud and unforgiving wail. It cuts through absolutely everything. I absentmindedly nodded in the general direction of my phone when I heard it, but didn’t make a move as I was totally focused on rewriting a particularly sticky sentence. (Probably like every bloody sentence in this post…)
And so, I didn’t notice a woman sitting nearby get up from her chair and walk in my direction. I didn’t notice her stop right at my table. In fact, it wasn’t until she cleared her throat and said ‘Excuse me’ that I looked up, realising there was someone right there. She was fixing her mask behind their ears at the moment I looked up at her, my eyes focusing away from my MacBook. I blinked a few times and smiled, and then reached for my own mask before realising it was already on my face. I exaggerated my smile, so I was smiling with my eyes.
There was a slightly awkward moment as I waited, because, look, I’ve forgotten how to engage with people. I probably should have said ‘hi’, but I’ve really lost the art of chatting with people. How do conversations start? So, I was thankful when she introduced herself. And then she asked, ‘Are you okay? I heard your Dexcom a couple of times. I just wanted to check you are okay.’
And that was how I broke my streak of having conversations about diabetes with other people with diabetes I’ve never met before.
Turns out, I’ve missed it. Really, missed it.
We spoke for a while, sharing the usual things, comparing notes about which HCPs we see, and talking about which tech we are using. She is about to start looping, so I answered a heap of questions, remembering that I need to not be too evangelical and gushy about it. I toned down my ‘It’s the best thing I’ve ever done for my diabetes’ (because it is) by adding ‘But, of course it’s a learning curve and can be tricky.’
We told self-deprecating stories about how crappy our attitudes to diabetes have been at different periods. We shared our Covid-19 vaccination stories and compared when we’d be getting boosters. And we spoke about how we felt every time diabetes was mentioned in connection to Covid-19.
Through it all my Dexcom kept squealing and I ignored it because I just wanted to slurp up a diabetes conversation with someone in real life, where all we really had in common was diabetes. It felt like a therapy session, a confession, and catching up with a long-lost friend all in one fifteen-minute encounter.
When our conversation ended, she turned to return to her seat, and I settled back, searching for the sentence I’d been working on. But before I could do that, she turned back towards me and said, ‘I read your blog. I’ve seen you here before…well, used to see you here before Covid…and I wanted to say something. It’s really lovely knowing that there is someone like me who comes here.’
And then I cried. Because I remembered just what it is to connect. How real it feels. It’s why I started this blog in the first place – because I wanted to meet others just like me. Well over ten years of writing about diabetes, twenty years of diabetes advocacy, and that feeling of connecting never gets old.
Lots more diabetes in the wild stories on this blog post from earlier this year.
I shared this photo to Twitter the other day:
I couldn’t care less if there are diet books on bookshelves at bookshops. Clearly there is a buck to be made with the latest fad diet, and so, diet scammers gonna scam and publishers gonna publish.
What I do care about is the framing that health is limited to weight loss and dieting.
Living with diabetes has the potential to completely screw up the way food, weight and wellbeing coexist. My own disordered thinking has come from a multitude of different sources. I know that even before diabetes I had some pretty messed up ideas about weight loss and my own weight, but once diagnosed all bets were off and that thinking went haywire! I know it didn’t help when, in the days before diagnosis as I was feeling as though I was slowly dying, someone effusively told me how amazing I looked after having lost some weight that I really didn’t ‘need’ to lose. And look at that! A little weight bias in there already as I talk about ‘not ‘needing’ to lose weight’.
I remember that afternoon very clearly. It was Easter Sunday and my whole family was at my grandmother’s house. I’d had a blood test the morning before because I’d gone to my GP with a list of symptoms that these days I know to be ‘The 4 Ts’. (In hindsight, why she didn’t just do a urine check or, capillary blood check, I don’t know.) I was feeling awful and scared. I knew something was wrong, and suspected it was diabetes.
But there I was, literally slumped on the floor against the heater (at my grandmother’s feet) because it was the only place I could feel any warmth at all. Sitting opposite me was a family member who felt the need to tell me how amazing I looked because I’d dropped a few kilos. I could barely see her across the room because my vision was blurry, but hey, someone told me I looked skinny. Wonderful!
That road to further screwing up my thought processes about weight and diabetes was pretty rocky and I was on it. I learnt that thing that we know, but we don’t talk about anywhere enough routinely, and that is that high glucose levels equal weight loss equals compliments about losing weight. (We don’t talk about it because there’s not enough research, but also because in the past a lot of HCPs have gatekept discussions about it because they think that by talking about insulin omission or reduction for weight loss will make people do it. Sure. And sex education for school-aged kids is a bad thing because by NOT talking about sex, teenagers don’t have sex. End sarcasm font.)
It has taken years of working with psychologists to undo that damage – and the damage that diabetes has piled on. I employed simple measures such as stopping stepping on scales and using that measure as a way to determine how ‘good’ I was being. As social media became a part of everyday life, I curated my feeds to ensure I was not bombarded with photos that showed a body type that generally is only achievable when genetics and privilege line up. I learnt to not focus on my own weight and certainly not on other people’s weight, never commenting if someone changed shape. I did all I could to reframe how I felt about different foods, because demonising foods is part of diabetes management.
I was determined to parent in a way that didn’t plant in my daughter’s head the sorts of seeds that had sewn and grown whole crops in my own. While a noble ambition, I realise I was pretty naïve. Sure, we absolutely never talk weight at home, we never have trashy magazines in the house celebrating celebrities’ weight loss or criticising their weight gain. I’ve never uttered the words ‘I feel fat’ in front of my daughter even when I hate absolutely everything I put on my body. Food is never good or bad, and there is no moral judgement associated with what people eat. But the external messaging is relentless and it’s impossible to shield that from anyone. All I could do is provide shelter from it at home and hope for the best.
But despite doing all I can to change my way of thinking and changing my own attitudes and behaviours, it takes a lot of work…and I find myself slipping back into habits and not especially healthy ways of thinking very easily.
Which brings me to my favourite bookshop over the weekend and standing there in front of the health section. I was looking for something to do with health communications, or rather, the way that we frame life with a chronic health condition like diabetes. I wondered if there was anything that spoke not about ‘how to live with a chronic health condition’ but rather ‘how to think with a chronic health condition’. I didn’t want to read more about what to do to fix my body; I wanted to find out how to help focus my mind and love my body. But there was nothing. Nothing at all.
Instead, there were shelves and shelves of books about losing weight, dieting, fasting, ‘cleansing’ (don’t get me started) and then more on fad diets.
When I tweeted the photo, one of my favourite people on Twitter, Dr Emma Beckett (you should follow her for fab fashion and fantastic, fun food facts), mentioned that it is a similar story in the ‘health food’ aisles of the supermarket, where there seems to be a focus on calorie restriction.
How has the idea of being healthy been hijacked by weight loss and diets? How has the idea that restricting our food, limiting nutrients, and shrinking our bodies equates health?
How did we get so screwed up at the notion that thin means healthy; that health has a certain look? Or that dieting means virtue? How is it that when we see diabetes represented that it so often comes down to being about weight loss and controlling what we eat, as if that will solve all the issues that have to do with living with a chronic condition that seeps into every single aspect of our lives?
It takes nothing for those disordered thoughts that are so fucking destructive, thoughts that I have spent so long trying to control and manage and change, to come out from under the covers and start to roar at me. Diabetes success and ‘healthy with diabetes’ seems to have a look and that look is thin. (It’s also white and young.)
Health will never just be about what someone weighs. And yet, we keep perpetuating that myth. I guess that steering away from the health section of bookstores is selfcare for me now. Because as it stands, it just sends me into a massive spin of stress and thinking in a way that is anything but healthy.
NOTE
I work at Diabetes Australia. It is important for me to highlight this because I am writing about a TV show that has not been especially complimentary to that organisation. That is not why I’m writing though. I’m not here to defend or respond to the claims made about
Diabetes Australia. This post is about the way the story of type 2 diabetes is being told in the series.
However, I think that it is important to highlight the lens through which I am watching this show and consider that bias. I think it is also important to consider that my position about stigma, blame and shame and type 2 diabetes has been consistent for a long time.
This post not been reviewed by anyone at Diabetes Australia. As always, my words and thoughts, and mine alone.
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It will come as no surprise to most people that when Diabetes Australia launched a new position statement about type 2 diabetes remission, there was a section on language when speaking about this aspect of type 2 diabetes management. There is also this point: ‘People who do not achieve or sustain remission should not feel that they have ‘failed’.’
Language matters. I wrote about my own concerns about how we talk about type 2 diabetes remission in a post a couple years ago. I am not saying that we shouldn’t be talking about it, or helping people understand what remission is, but I am saying that the way we talk about it must be considered. Because adding more blame and shame to people serves only to further contribute to the burden of living with the condition.
Unfortunately, the same consideration has not been given to a new show on SBS, grandly called ‘Australia’s Health Revolution’. The three-part show is presented by Dr Michael Mosley and exercise physiologist Ray Kelly, with the aim to show that type 2 diabetes remission is achievable with a low-calorie diet. Eight Australians with type 2 diabetes, or pre-diabetes are there as ‘case studies’.
This post is likely to draw criticism from some, and I accept that. But I will point out that it is not actually a commentary on whether remission of type 2 diabetes is achievable or sustainable for people with type 2 diabetes. I am a storyteller and a story listener, and I hear stories from people who say that they have achieved remission and others who haven’t. In the spirit of YDMV, I’m going to say that there is no one size fits all, and that this is a super complex issue.
This post also isn’t a commentary on the struggles some people with type 2 diabetes face when trying to find a HCP who will support them to aim for remission using a low calorie and/or low carb diet. I think that my position on that is abundantly clear – if your HCP isn’t supporting your management decisions, find a new HCP.
What this is about is how a TV show being shown at prime time is presenting type 2 diabetes, and what is being missed.
Michael Mosley is a TV doctor from the UK who has written books about low calories diets. I probably should be wary to say anything that isn’t glowing praise for the good doctor, because last time I dared do that on TV I was fat shamed. Of course, I wrote about it. Read it here. I know people who diligently follow his 5:2 or low-calorie eating plans and say it has greatly helped them and is terrific for their health. To those people, I say ‘Fantastic!’. Finding something that works is a challenge, and if you’ve found that and you are enjoying it and it’s sustainable for you, brilliant. Anything that improves someone’s health and makes them feel better should be celebrated!
I have no comment to make about Michael Mosley’s diets or the fact that he is selling something – books and a subscription diet plan. But I do have a lot to say about the way he is presenting type 2 diabetes. He is treating type 2 diabetes like an amusement park ride. He started in the first episode by sharing that he was going to ‘Put his body on the line eating a ‘fairly typical Australian diet’ … of ultra-processed food, to see if it pushes his blood sugar into the diabetes range.’ He then had baseline bloods and other metrics taken.
The food Michael Mosley claims to be typically Australian bears no resemblance to the foods that I eat, that I grew up eating, that I cook, that any of my friends or family eat. But, unlike Mosely, I’m checking my privilege right here, and acknowledging that living in inner-city Melbourne with the means to buy fresh foods whenever I want or need and having an excellent knowledge of food and health, plus the time to make things from scratch (something I greatly enjoy doing) means that I am in a different situation to many people whose circumstances don’t mirror mine.
I don’t judge what other people eat, and I don’t apply moral judgements to food. I consider what it costs to put food on the table, and food literacy. Plus, I am learning about how we have simply used the term ‘cultural groups’ to point to higher rates of type 2 diabetes in people of certain backgrounds is a lazy, get-out-of-jail-free card that doesn’t examine important factors such as food availability, poverty, education and history.
I understand that while for some people, walking to the local market is easy and affordable shopping, others are at the mercy of what is on the shelves of their local supermarket. It is not as simple as saying stop eating processed foods when, for some people, that is all they have access to, or to tell people to cook for themselves where they have never been taught. These systemic considerations have not been addressed so far in the TV show, and without doing so, only half the story is being told.
And mostly, I understand that there are genetics at play – massively.
These are not excuses. These are factors that need to be mentioned and considered, because without doing so, we are presenting this as a simple, mindless issue and anyone who doesn’t put their type 2 diabetes into remission has only themselves to blame.
Mosley ate his ‘typical’ Aussie diet for three or so weeks and when he had those same checks run to compare against his baseline, he found that his weight had gone up, as had his blood pressure, glucose levels, cholesterol etc.
Now, if you are thinking you have seen all this before and jumped into a time machine and been taken back to 2004, you would be correct. We saw it first in 2004 when Morgan Spurlock entertained us with his documentary, ‘Super Size Me’. And then again in 2015 with Damon Gameau’s film ‘That Sugar Film’. There is nothing new about privileged white men eating the ‘foods of the poor’ and showing that their health has taken a hit.
Michael Mosley then started eating a low-calorie diet to show just how quickly and simply his weight dropped, and other metrics moved back to within target range.
Thankfully, alongside Mosley is Ray Kelly, and I am so, so grateful that he is there, because he leaves the sensationalist schtick behind to focus on the people and their stories, working to help them set achievable goals. He replaces Mosley’s melodramatic with compassion, simplicity with conversations about the complexity of diabetes, and privilege and assumptions with a genuine acknowledgement of the challenges – the social, generational, cultural, psychological challenges – faced by the people with diabetes and prediabetes on the show.
When watching the show last night, my daughter said, ‘Is this like ‘The Biggest Loser’ on SBS?’. I smiled but pointed out that the difference is Ray Kelly. In this show, he is working with Lyn, a woman who is trying to lose weight. Lyn has decided she wants to climb a hill in her area. If it was ‘The Biggest Loser’, they would have tied a truck tire around her waist and made her climb to the top of the hill, with Michelle Bridges screaming at her while she was doing it. But here, Ray marked out the first challenge – a 50 metre there and back walk, to be increased to 75m the next day, knowing every step is one more than the day before.
The big piece missing for me in this television series the absence of any sort of mental health professional (perhaps this will be included in the final episode?). Diabetes is never just about numbers. It’s never just about what we eat, or the medication we take, and it’s never just about what we weigh. Addressing behavioural change must be part of this discussion if change is to be sustained. In an interview he did for the show, Mosley says ‘Anxiety also encourages people to eat more’. And yet, at no point has anxiety or any other mental illness and its impact into type 2 diabetes and obesity been discussed.
Should we be speaking about type 2 diabetes remission? YES! Of course we should, especially as there is a growing body of evidence helping us to understand more and more about it. But we need to be doing it better than we’re seeing here. I don’t know Ray Kelly (expect for a couple of encounters on Twitter), but I feel that his approach is what we need more of. We certainly don’t need sensationalism and blame and shame. And please, we don’t need more stigma.
Last month was the tenth anniversary of Diabetes Australia first launching a position statement about diabetes and language, encouraging everyone – health professionals, researchers, the media and the general public – to be conscious of just how powerful the words used about diabetes can be.
People with diabetes already knew this – we’d been speaking about it for decades. But to have a document supported by research certainly did add some weight to the discussion. It started a global movement and other diabetes organisations and groups have since launched their own guidance statements and documents motivating the use of language that doesn’t shame, blame and stigmatise diabetes.
Today, I’m so delighted to be hosting a panel with some of the people who have been instrumental in elevating and advancing the #LanguageMatters movement all around the world. You can watch from the Diabetes Australia Facebook page – there’s no need to register. And, I’ll share the full video of the Summit on here some time in the next couple of days.
Disclosure
I work at Diabetes Australia. I have been involved in organising this event and will be speaking at it. I’m sharing simply because I’m beyond exited that it’s happening and am hoping to see lots and lots of you there!
When I talk about the highs and lows of diabetes it’s not just the rollercoaster of numbers. I wrote yesterday about feeling a little low and overwhelmed after a particularly gruelling day. Today, however, I’m on an absolute high after a busy night, or rather, early morning, giving two talks at the ISPAD conference.
docday° was a little different this time, in a truly brilliant way. It was the first time that the event was on the scientific program of a conference, meaning that it was easier for conference registrants to attend. Having a program session that is truly led and designed and features PWD, elevates the standing of lived experience.
The docday° program highlighted some of the topics very close to the hearts of many people with diabetes. Emma Doble from BMJ spoke about working closely with the docday°voices team to publish stories written by individual and groups of people with diabetes. How fantastic to see the words and lived experience feature in such a prominent medical journal!
I touched on language and diabetes – the first talk on the topic for the conference for me. Steffi Haack gave a beautiful talk about peer support and touched on what we get from being in a community of others with diabetes can offer. Steffi managed to perfectly capture the essence of what the community can offer, while also discussing why it’s not necessarily perfect. And we finished with Tino – Tinotenda Dzikiti – from Zimbabwe talking about access and affordability of diabetes medications and treatments. Tino has been a standout advocate in the dedoc voices program, and I make sure to take any chance I get to listen to him.
After docday°, I was an invited speaking in the Psychosocial Issues in Diabetes Symposium which involved an incredible panel of speakers including Rose Stewart from the UK and Korey Hood from the US. Rose spoke eloquently about the importance of integrating psychologists into diabetes care teams, and Korey provided some terrific tips about dealing with diabetes burnout. I followed the two of them (not daunting at all…!) to talk about the language matters movement in diabetes, starting with a reminder that we are talking about more than language – and it’s certainly more than just specific words. It’s about communication, attitudes, images used, and behaviours.
The way that I speak about language these days is different. I think that at first, I spent the majority of the time explaining what it was all about. These days, there seems to be enough ‘brand awareness’ in the community about language matters and that means being able to home in on some of the more nuanced aspects of it.
And so, while I still talk about words that I (and from research we’ve done, others) consider problematic (‘compliant’ is the one that I like to highlight), I spend more time talking about the image problem diabetes has, and about the trickle-down effect language has had on shaping that image.
I point out that there are people who think that language is not all that important in the grand scheme of things, and that there are more important things to worry about in the diabetes world and I very much understand that. I also understand that people have different focuses. But when I ask people what those important things are, they include issues such as research for a cure and better treatments, better access, more education. And then I can’t help but see and think about how research is less because of the image problem about diabetes. That treatments and a cure need governments to prioritise diabetes when it comes to their research dollars and individuals need to give generously when there are funding drives.
But because diabetes is seen as something not serious, and that people are to blame for their own health condition, we are not seeing those dollars coming our way.
It never is and it never was about picking on certain words; it has always been about changing attitudes. Because that is what will change diabetes’ image problem.
I am an advisor to the #dedoc° voices program. I do not receive any payment for this role.
As an invited speaker at the #ISPAD2021 annual meeting, I was given complimentary registration for the conference.
I am helping organise the Diabetes Australia Global Language Summit, and will be hosting the panel discussion.
Diabetogenic 