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A few weeks ago, I saw this tweet:
(click to be taken to original tweet)
Clinical psychologist, Dr Rose Stewart, was giving a presentation where she highlighted that the power imbalance we experience between HCPs and PWD carries through to online spaces. (Thanks to Mark Guyers for live tweeting Rose’s talk.)
The diabetes online community (DOC) was a space created by people with diabetes for people with diabetes. It’s been around for many years. Australian-based site, Reality Check, had an active online forum back in the 1990s. Diabetes blogs led by DOC pioneers such as Kerri Sparling and Scott Johnson (and others) were around in the early 2000s. I wrote a weekly pregnancy blog for a diabetes peer site when I was expecting our kid in 2004 (which I republished a number of years later on Diabetogenic here).
Twitter chats (starting with #DSMA) followed. The chatter of the community goes where the community congregates; different groups use different forums to meet and chat. Kerri wrote this brilliant report on the history of the DOC. It’s a great read to learn from those who were instrumental in bringing together the community online.
I agree with Rose: Our community is better because it includes stakeholders from all corners of the diabetes community including HCPs and researchers. Jane Speight and the ACBRD team; Deb Greenwood, Hope Warsaw and other shining stars from the AADE; and clinicians and researchers from projects such as HypoRESOLVE contribute to DOC discussions and make them far richer and more rounded. That’s just the way it is when we hear the perspectives of all people living with, affected by, working in, and researching diabetes.
Some of the great outputs of these collaborative efforts include research projects, conference presentations and, of course, the development and production of this wonderful #LanguageMatters video.
Our community is not better when PWDs’ personal experiences or feelings are challenged, and unfortunately, that seems to be the default of some non-PWD and HCPs in the community. I’m not for a moment suggesting that PWD don’t challenge each other’s ideas and opinions. (Yes, I’ve read Bernstein. I’m just not that into him, but you do you.) But it is undeniable that there is a difference when it is PWD challenging each other as compared with when HCPs challenge us. There is power at play in the latter. And that is important to remember.
The spectrum of this is from the downright abusive (such as a doctor’s now-deleted response to this twitter thread I shared), to defensive: what I call the ‘Yes, but…’ response. In some ways, it is this particular reaction that is more difficult to deal with.
I find it really problematic when someone speaks about a horrible situation only to be challenged by HCPs. Responses such as ‘Yes, but we’re trying,’ or ‘Yes, but things are better than they used to be,’ or ‘Yes, but we’re not all like that,’ are defensive and don’t acknowledge or respect the experience being shared by the PWD.
When HPCs make these sorts of comments in response to someone sharing their less than ideal experience, it shifts the discussion from the PWD (and that experience) to broader interactions between HCPs and PWD. At its very worst, the discussion moves to how HPCs are challenged by ‘misbehaving PWD’. Live tweeting from the sex and diabetes session at the IDF Congress got messy when it skidded into commentary about how difficult ‘patients’ were and that if only they did what they were told, HCPs would have a much easier job. It was clear from the online commentary that HCPs’ agendas are more important than PWD, and sure, sex and sexual health is one of the things that isn’t addressed, but what of it? HCPs are already too busy doing other things (things, incidentally, that they have deemed important).
So, what happened? Well, in this instance at IDF2019, I shut down and stopped engaging, as did other PWDs. We shouldn’t need to argue and fight to defend what we think is important in diabetes care. And we shouldn’t be made to feel that our thoughts and feelings about diabetes need justifying. Or that we are the problem in a health system at breaking point.
The power imbalance – and yes, that is very, very real, even for bolshy advocates like me – comes to the fore when this sort of thing happens. It can feel as though we are being reprimanded or told off or tone policed for the way we are telling our own story or for daring to suggest that we have experienced troubles and distress in healthcare.
I have recently taken a couple of breaks from SoMe because of this sort of stuff. I don’t feel that I should ever need to rationalise my own experiences or how I feel as a person with diabetes. And yet, there have been numerous times where HCPs have made me feel that I do, or that my thoughts are not as valid or significant as theirs. I’m getting far better dealing with these situations. I’ve started using the unfollow and mute buttons in a way that is constructive and results in a far gentler Twitter feed!
So, back to Rose Stewart’s presentation. She is certainly right. That power imbalance does travel from the clinic environment to the online space and it can be damaging to PWD. HCPs are part of the fabric of the DOC and their contributions are important. But not ever at the expense of the comfort and safety of PWD.
P.S. No, I am not saying PWD get free rein to say and do whatever we want just because the DOC is by and for us. Basic manners don’t get thrown out the window just because it is our space. Being rude, nasty, aggressive, dismissive or impolite to anyone online is not okay. Being angry when we write about crappy situations is not being rude, and it is a perfectly understandable and acceptable response to what we have all faced at one time of another living with diabetes. (And that’s got nothing to do with #LanguageMatters – that’s just basic courtesy that we should all know and understand!)
On the first day of IDF, a star of the Diabetes Spotlight was Ella Adams. We wanted to hear about how children with diabetes are best supported, what works and what could be improved. In the past, we usually don’t hear directly from the young person themselves. But at the IDF Congress this year, the Living with Diabetes program team was committed to hearing the lived experience as much as possible. Ella’s dad, Jason, gave a brilliant overview of how he and his wife have supported Ella, but then he stepped aside and Ella told her own story. And she did it beautifully.
Ella shared stories about how best laid plans sometimes just go a little haywire. Admirably, she just gets on with things, dealing with her diabetes around whatever situation she is in. She is fiercely independent and is doing such a stellar job of working out she wants to do diabetes in a way that works for her. She has taken on more and more responsibility for her own diabetes, her parents stepping back as she has felt ready to step up.
We had two young people on the program in the Living with Diabetes stream this year and I am so proud that we stayed true to our wishes of handing the microphone as much as possible to people living with diabetes. We saw a different type of program and Ella was very much a part of that.
Jason filmed his daughter’s presentation and shared it on YouTube, and they have given me permission to share it here. So here’s Ella. What an absolute star!
DISCLOSURE
I was the Chair of the Living with Diabetes Stream at the IDF Congress in Busan. My flights to Busan were covered by Ascensia Global (in order for me to get to Busan in time to co-facilitate their Social Media Summit). Flights home and accommodation were covered by the IDF.
Who wants to get out of a warm hotel bed and wander through the freezing streets of Busan to the BEXCO conference centre on the last day of an exhausting conference to be ready for an 8.30am session on diabetes and sexual health?
As it turns out, a lot of people do (including a few people who may have been doing karaoke until just a few hours earlier).
The symposium was in three parts. I started by talking about the female perspective of diabetes, sex and sexual health, followed by Grumps (Chris Aldred) giving the male perspective. Brilliant physician and academic, Fauzia Moyeen, closed out the session by highlighting current research in this area of diabetes.
Introducing Fauzia Moyeen to the stage.
My session at the IDF Congress focused on the recurring themes I hear from women living with diabetes. These themes were evident in responses to the blog post I wrote a couple of weeks ago asking women to share their experiences, and reinforced the messages I’d received after previous posts I’d published about diabetes, women and sex.
As much as I had wanted to present a variety of different experiences, the messages I heard from women was not especially diverse! Women from countries considered more liberal and open to discussions about sex said exactly the same things as out sisters from countries where you would expect limited information about sex and sexual health.
Over and over and over again, women echoed that they had never spoken about this issue with a healthcare professional, and if they had raised it, they were told diabetes does not impact on sex.
Some of the quotes were absolutely heartbreaking. Women shared stories of how their relationships ended because sex had become so painful and uncomfortable after their diabetes diagnosis and they had not been able to get help. One woman was told ‘…get used to it because that’s how it is’, another was told the pain was not real.
The emotional impact of feeling that yet another part of our bodies is letting us down and not doing what it is meant to is never considered or discussed. We are left to flail around with these intense feelings and concerns. It’s not even a matter of being able to get help – we don’t have anyone signal to us that this could be an issue.
Then there is the mess of adding hypos, or fear of hypos into sexual activity, or trying to be intimate when we’re hyper and our bodies feel leaden and achy. There is so little that is sexy about diabetes, and that may be especially true when we are trying to be our sexiest!
And then there is the whole contemplation of how to introduce a new partner to devices stuck on bodies and scars on skin, and the worry about how that will make them see us.
Discussion after my talk was lively, with HCPs asking some great questions. One wanted to know how to bring up the topic, which is really important. Many people are not comfortable talking about sex and sexual health. Not everyone is happy to share when they are experiencing problems. Cultural considerations come into play here as well. Having a HCP of a different gender speaking about sex makes some people very uncomfortable. One HCP said that when he has raised the topic, he’s been told that it’s none of his business.
I had some suggestions about normalising discussions about sex, while remain sensitive to people with diabetes, allowing them to dictate if this is a topic for discussion.
I believe it is essential that the person with diabetes is the one who decides whether or not sex and sexual health are to be topics of discussion. Now that doesn’t mean HCPs don’t get to ask at all, leaving all responsibility to the PWD. They can provide prompts. Perhaps have some brochures in the waiting room that can be accessed by women. (Yes! There are such things and you can see them here.)
Also, list sexual health and sex as something that may be affected by diabetes in general diabetes discussions. Think about it as a complication of diabetes and address it as you would any other complication. Just mentioning it plants a seed for the PWD to understand that this may be something that needs attention.
I borrowed a suggestion I heard Sarah Le Brocq during her language and obesity talk at the DEEP Summit earlier this year. Sarah shared how one GP practise has a little form for people to fill in before they go to see the doctor. There are a list of different issues and the person can tick the topics they are comfortable having discussed in the appointment. (This, she said, is a brilliant idea for people living with obesity, because often that is the first and only thing the doctor wants to speak about, even if the reason for the appointment is a sore finger or something irrelevant to the person’s weight).
Translated for diabetes, develop a checklist with potential topics, with sex as one of them. If the box had been ticked, that would signpost to the HCP that this was a topic that the person with diabetes wanted to discuss.
Another question came from a doctor who asked how to make discussions about sex a priority when he needs to focus on diabetes-related complications. ‘If a person is dead from a heart attack, sex won’t matter,’he said.
The response from people with diabetes was the same. Consultations need to focus on the issues that matter to people with diabetes, not tick the box exercises so HCPs feel that they are getting in all the things theywant to speak about.
Yesterday, I wrote this in my post:
‘… sometimes the chasm between what people living with diabetes want and need and what HCPs and researchers think we want is gulf-like.’
I felt that keenly after my talk. Women had told me that relationships had ended because of how diabetes had impacted on their sex lives. Others said that the discomfort they felt having sex meant that they just didn’t want to, and it had become a constant source of tension between them and their partner. Other women felt that they were failing themselves and their current or potential partners. One woman said that she refused to have sex because she didn’t want anyone to see how diabetes had marked her body.
To me, these sound like issues that need to be addressed, as much as, if not more so, than trying to adjust basal rates. They are just as important as making sure someone is doing their foot checks. They are far more important than knowing a current A1c. Dismissing the importance of sex in a woman with diabetes’ life as less critical than other aspects of her diabetes care clearly is doing us no favours.
The feedback following the session was really positive and I hope that we start to see similar sessions on programs at other diabetes events. Let’s get the dialogue happening so that women can feel comfortable talking about diabetes and sex. And get the help we may need.
DISCLOSURE
I was the Chair of the Living with Diabetes Stream at the IDF Congress in Busan. My flights to Busan were covered by Ascensia Global (in order for me to get to Busan in time to co-facilitate their Social Media Summit). Flights home and accommodation were covered by the IDF.
Busan is a very different city today than it was last week. There won’t be warmly dressed people hurrying into BEXCO with IDF2019 lanyards around their necks, eager to learn about diabetes. The word ‘diabetes’ won’t be uttered in almost every language of the globe. There won’t be Melbourne diabetes people loudly lamenting that Starbucks seems to be the coffee of choice in the city.
And you won’t see groups of people from all around the world standing together talking about what it’s like to live with diabetes. Most of us have gone home to our respective corners of the world, back to our families, back to our jobs, back to our real lives. But we will always have Busan and the incredible week of the IDF Congress.
By the time I arrived in Busan on Monday, the IDF was already a different beast. There was a new President and Board in place and some of the concerns that we’d had about the handover had melted away to nothing. This paved the way for what we really there for: a week of learning, networking, hearing different perspectives and truly uniting for diabetes.
We did that.
Was it a perfect conference? Of course not; they never are. There were hiccoughs and AV fun. There were controversies that played out online very differently to the way they actually happened in real life. There were sessions – critically important and brilliant sessions from all streams– with disappointing turnouts.
But these are all minor concerns that are the reality of every conference I have ever attended. There will be a time for post-mortems and evaluations and planning for improvements to future conferences. That time, however, is not now. Now is the time to celebrate.
IDF 2019 was a brilliant showcase of diabetes from around the globe. As expected, I only attended sessions from the Living with Diabetes stream and every single story was beautifully presented, and enhanced by the professional expertise of the HCPs who shared the stage. Amongst the incredible tales were moments of discomfort. It’s challenging to hear of the struggles many of my sisters and brothers with diabetes face in their day to day lives. I was forced to confront my privilege in a way that demands more than just acknowledging it there.
Also, difficult to accept is realising that sometimes the chasm between what people living with diabetes want and need and what HCPs and researchers think we want is gulf-like. For every HCP who ‘gets us’ and understands the value of lived experience in the healthcare space dialogue, there are many others who just don’t accept it, and, despairingly, don’t want to listen.
But more on that another day. Because for now, I’m focused on the people who did such a stellar job. So here are just some of them!
Two hours after touching down in Busan, and we kicked off the sixth Ascensia Social Media Summit with these gems.
Bright and early on day 1 of IDF2019, and the auditorium was packed to hear about diabetes and tech.
Always, ALWAYS, pleased to share the stage with Jane. Here we are just before the panel session.
Georgie excited to TALK ABOUT HYPOS! (We couldn’t understand why there was an explanation mark at the end of that sentence.)
Manny Hernandez gave the LWD Stream Award Lecture and there is no one more qualified to talk about the importance of diabetes community. How honoured I was to introduce him!
Celebrating Manny! (Photo courtesy of Boudewijn Bertsch)
From Melbourne to Busan. Neighbours at IDF2019. Jo was speaking about living with a rare type of diabetes and Andy was there for support (and photos from rooftops).
This woman! Sana, deputy lead of the LWD Stream and a bright, fierce force.
Anita eloquently explaining the challenges of living with diabetes-related complications in Indonesia.
Apoorva highlighting #LanguageMatters in her talk.
Some of the most dynamic young people I have ever met at the Young Leaders in Diabetes Training Summit.
Cherise can always be relied upon to ask thoughtful questions.
I’ve lost count of the cities we’ve done our #DiabetesOnTour this year, but these blokes have made all my travel so much better! Thanks Bastian and Grumps.
My favourite people at IDF2019? The two baristas running this uber-hipster coffee van.
We were all surprised to see the room packed full at 8.30am on the last day of the Congress. Sex sells. Or people just want to talk about it…
One of the best pieces of advice I was ever give was this: surround yourself with smart women. This is the LWD stream from IDF2019. I truly was surrounded by the smartest of women! Thank you Sana, Pei Yan and Elizabeth.
The final session in the LWD and my highlight of the whole congress was my neighbour, Sol, talking about living with MODY 3. We could not have scripted a closing remark better than his: ‘Being at this conference has made me feel part of something and with people that understand.’ Welcome to the world of diabetes peer support, Sol. You are so, so very welcome here.
DISCLOSURE
I was the Chair of the Living with Diabetes Stream at the IDF Congress in Busan. My flights to Busan were covered by Ascensia Global (in order for me to get to Busan in time to co-facilitate their Social Media Summit). Flights home and accommodation were covered by the IDF.
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.
Today is Pregnancy and Infant Loss Remembrance Day. For many, it’s an occasion to mark the babies that we never got to know and watch grow up. It’s the hugs we never gave, the stories we never got to share, the first days we never got to celebrate. Those of us living with chronic health conditions have an extra level of complexity to deal with, as we wonder if our own bodies were partially (or completely) responsible for those losses. Sometimes, we never know.
But we hold close those losses and all that comes with them, carrying them quietly. Until the roar back into our consciousness.
Just a couple of weeks ago, I went to the GP because I had a UTI. (One day, the oversharing will stop. Today is not that day.) As the gift that keeps on giving, diabetes means that UTIs are more common in women with diabetes than those without. This is another reason that diabetes is so, so much fun.
My new GP asked if I’d noticed an increase in insulin needs because of higher glucose levels due to the infection. She then asked some general questions.
‘Is your period regular?’ she asked.
I nodded. ‘Like bloody clockwork. 28 days to the minute! Where was that when I was trying to have a baby?’ I remembered the desperation of wanting a reliable period to signal some sort of regular ovulation and the relief when I started on fertility treatment to make that happen.
‘Could you be pregnant?’ she then asked.
Could I be pregnant? Well, technically, I guess I could. ‘Jesus! I hope not!’ I exclaimed, wondering how my almost 46-year-old body would cope with such an assault! And then, because I catastrophise everything, I started to imagine first trimester blood sugars and hypos and climbing insulin requirements and all the other things that mammas with diabetes have to think about every second of a pregnancy.
I nearly threw up. Which I attributed to morning sickness. Obviously.
She handed me a jar and sent me to the bathroom for a sample.‘We’ll do a pregnancy test here now and also send the sample away to make sure the infection you have is going to respond to the antibiotics I’m prescribing,’ she explained to me.
I’m not pregnant. I breathed a sigh of relief when she told me that, flashing back to the complete opposite feeling I used to have each month when I realised that was the case. And to the literal and figurative emptiness I would feel when I realised another month had passed and I was not pregnant. And how that emptiness would increase exponentially after each miscarriage.
At the time, I didn’t have anyone to really talk to about how I felt. I had the support of my family, but there was no one who could understand the shame I felt, or the blame I was attributing to my diabetes – and therefore to myself. It’s only since speaking about it that I realised that so many other women feel the same way. And friends with diabetes have similar stories to share. We just needed an opportunity and a space to talk. And listen.
Today is a chance to do that. My love goes out to all of you who have lived through pregnancy loss, or who have lost a baby. I hope that you have a safe place to tell your story. And to my friends with diabetes who have experienced pregnancy loss: be kind to yourself. Sometimes the path we walk is lonely, and littered with too many times when we blame ourselves, when instead we should be kind and gentle. Today is a really, really good day to remember to do that.
Some more stories to read…
I wrote this for Mamamia just after my last miscarriage.
Kerri Sparling wrote this about her own experiences of infertility, and shared this guest post about pregnancy loss.
Anna Floreen’s story of pregnancy loss is heartbreaking, but I am so grateful to her for sharing it.
Once or twice in the years I’ve been working in the diabetes advocacy space, I have spoken and written about diabetes and language. And by once or twice, I mean rarely a day goes by when I don’t hashtag language matters somewhere on some social network.
You can call me a one trick pony (or Blossom), but I don’t mind, because I think that trick is pretty bloody important, and for the last eight years, I have been more than happy to highlight why the words we use when speaking about diabetes is critically important.
The first time I spoke about this was at the launch of the Diabetes Australia position statement, ‘A New Language for Diabetes’. I stood on stage at the Victoria State Library alongside Diabetes Australia CEO, Greg Johnson and ACBRD Director, Jane Speight as we started what has become a movement, supported by the diabetes community around the world. This was in September 2011 and this photo is from that day.
Now, eight years later, it’s time to revise the statement the started the #LanguageMatters juggernaut, and that’s where you come in.
Diabetes Australia is inviting people living with diabetes, their friends and families and HCPs to complete a survey about to have their say about the words and language used when speaking and writing about diabetes. This is your chance to share what is important to you, what really matters and what doesn’t really bother you at all. We know that the way we communicate about diabetes does matter, but we need your help to shape our revised survey.
Click on the word cloud below to be taken to the survey, and please share in all your networks. We need to hear from you to help build the evidence for why this continues to be a critical issue in diabetes care and communications. Please help us do that!
DISCLOSURE
I work for Diabetes Australia and am on the working group reviewing the Language Position Statement. I was also involved in the development of the initial statement. I have not been asked by Diabetes Australia to share details of the survey which will be used to inform the revision, but of course I am, because how could I not?!
Two things happened that got me excited on the 6 train when I was in New York back in June.
Firstly:
Obviously, every green circle in the world ever is a tribute to Loop. That’s my story and I’m sticking to it, and I refuse to be told otherwise.
And secondly:
Click on pic to be taken to the campaign where you can clearly see this and other images.
I absolutely love this from NYC Department of Health and Mental Hygiene. The campaign is called ‘Choose the Best Words’ and encourages people to speak with their friends and family, and learn how to support those who need it. Ads like this one also highlight a recent city-funded mental health first aid training course that is offered in all five NYC boroughs. The ads, which were all over the subway and other places in the city, point out that using the right words and phrases to support those living with mental illness is really important and can help reduce associated stigma.
I guess this kind of follows on from yesterday’s post. I know that often people say things just because they feel the need to fill a silence…or just to say something, not realising the impact of the specific words they say. But it does matter. The choice of words you make really, really matters. And this beautifully simple campaign shows that.
Firstly, let me start this piece by saying #NotAllHealthProfessionals. There: I got it out there upfront because I know that what follows is likely to garner response from a shedload of healthcare professionals that they would never do the sort of crap I am about to write about.
Sure – I know that there are lots of great ones out there. I get that there are champions for our cause; HCPs who genuinely walk alongside us and truly listen to what we say and what we need.
But here’s the thing. It takes more than that; more than just doing the right thing in your own little world. It takes guts and leadership to take a stand, and it takes standing up to colleagues who are not getting it right. And sadly, even the good ones don’t do that enough.
Last week, I shared a pathetic image from a Facebook page that is, allegedly, a satire site. It seems to be administered by HCPs and most of the comments appear to be from HCPs. (You can see it here if you are on FB. I don’t want to share the image on my blog.)
I shared the image with these words: ‘This isn’t funny. it’s not smart. It’s not clever. Even less funny is that it appears this is a page for and by healthcare professionals. The comments are disgraceful. HCPs are not our allies when they do this sort of shit. Instead, they’re contributing to the distress and shame that many PWD feel.’
The thing that upset me most wasn’t the pitiful attempt at humour. Let’s be honest – there was nothing in there we had not seen before. A million times over. This sort of ‘humour’ is in the DNA of every stigmatising diabetes ‘joke’.
What upset me were the comments that followed. At last count, there were about 1,000 of them, most of them applauding the image. Here’s just a selection from the first few:
‘Brilliant – but no one ever heeds this advice.’ (From a nurse who claims 30 years of nursing experience.)
‘This is how I label things.’ (Pharmacist.)
‘Should be on every diabetes med.’ (Exercise physiologist.)
‘The things you wish you could say to patients without losing your job.’ (Nurse.)
‘Love that!’ (Med student.)
‘Hahahah!’ (Podiatrist.)
‘Legit needs to be on boxes.’ (Nurse.)
‘Sorry…I can’t read that small print on account of my sugary eyes.’ (Doctor.)
‘Hahahah. Great quality labelling.’ (Pharmacy student.)
‘Accurate.’ (Physiotherapist.)
‘I love this so much.’ (Doctor.)
‘Damn, should’ve mentioned patient’s McDonalds intake as consideration for Contrave (a weight loss drug).’ (Doctor.)
‘If only we could write that!’ (Nurse.)
‘Control your diabetes or you’ll lose your feeties.’ (Doctor.)
There were more… a lot more. Predictably, the very few of us who questioned just how this was meant to be amusing were told that we needed to lighten up/see the funny side in it/understand it was satire. Or people doubled down to tell us that we were wrong and then went on to school us with further myths about diabetes. Seriously, these people need to get just a touch of originality and try to come up with a stigmatising meme we’ve not seen several million times already, and then come back at us with inventive comments.
I am willing to bet that pretty much every single one of those HCPs will claim to be all about ‘patient-centred care’. I am sure that they believe that they are truly there for what their ‘patients’ need. If pressed, they would probably say that they would never, ever say something like this in front of a patient – because they care about us so much.
That’s bullshit.
A healthcare professional who is truly there to champion PWD would have called that meme out for every shade of stigma that it is. They would not have shared it amongst their colleagues or wanted to print it out for the tea room (as a couple of people said they had done). They wouldn’t have found it funny; they would have found it offensive, stigmatising and downright wrong. And they would have said that, trying to put a stop to hundreds and hundreds of comments.
And those HCPs who realised that it was a load of bullshit and said nothing? They need to look at themselves too. The standard you walk past is the standard you accept. When you say nothing, you’re implicitly saying that it is okay.
It is not okay.
Who remembers the outrage from HCPs last year when #DoctorsAreDickheads was trending on Twitter? (Here you go: I wrote about it here.) Doctors were outraged, offended and irrate, and urged patients to counter the horror stories that people were sharing with positive stories of their own doctor experiences. And what happened? People – patients – did that. Even I defended my HCP team when I wrote my blog post. And I even prefaced this post with a disclaimer, because I know that some HCPs will read this and be all indignant. If that is your response to this… respectfully, get over yourself!
Because, where are those HCPs now? Where are the doctors getting angry and outraged every.single.time we have to endure another stigmatising, cruel, demoralising and downright wrong ‘joke’ or comment? Where are the HCPs standing up at conferences when a presenter makes some comment about how PWD ‘fake’ our BGL results or ‘forget our meters’ for download or whatever other behaviour gets us a non-compliant mark against our name?
So, here is what I want to say to HCPs – every single one of you.
Please, please be an ally. Stand up for us. Listen to us. Don’t talk over us. Don’t tell us that our experience is wrong or doesn’t matter. Don’t walk by when your colleagues do this sort of crap. Don’t minimise or delegitimise us by saying that it’s ‘just a joke’ or promising us that you wouldn’t do this. Because enough of your colleagues do. (Also, don’t @ me and tell me how much better you are because you are a leader and don’t do this kind of shit or do call it out. That’s great. And thank you. This isn’t about you. But you still can do something.)
We need you to do this for us. Or rather, along with us. Because when we do it alone (and most of the time, it is us doing it alone), we are dismissed as being too emotional or not being able to understand the humour. As much as I wish it was enough for our comments to resonate, it isn’t. So, we need allies. We need you.
It takes courage and leadership. But if you truly, truly want to be there for us for what we need, then you need to step up. Please be an ally. Please.
P.S. There were a couple of HCPs who commented on the FB page that obviously, this meme was about type 2 diabetes and not type 1 diabetes. If you are one of those HCPs who insists on doing things like that, ask yourself just how much you are contributing to the misinformation and stigma about type 2 diabetes. We know that T1D is autoimmune/not preventable, but when you use a broad brush to correct comments about diabetes with ‘You mean T2D‘ you are not really helping. In fact, you’re just adding to the misinformation by suggesting that all T2D is preventable and that is not true. You know that. Do better.
Diabetogenic 