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Last week, my Timehop app reminded me of this snapshot in time.
This photo was taken at the 2013 International Diabetes Federation’s World Diabetes Congress in Melbourne, and that look on my face is of pure anger. I was listening to a speaker – a doctor – referring to ‘non-compliant diabetics’ as he was telling of the ‘poor outcomes’ of ‘patients’ in his practise.
The old language chestnut came up again on the second day of the #MayoInOZ conference during the innovation showcase was held. In this session, nine speakers were each given five minutes to present how they are using social and digital tools to improve healthcare. (This is where Kim spoke about #OzDOC and how healthcare professionals use the hourly tweetchat as an opportunity to engage and learn from people with diabetes.)
The final speaker in the innovation sessions was a late addition and it was great to see diabetes again being represented. I know I am biased, but I do always get excited when I see diabetes on the program!
Andy Benson from Coffs Endocrine and Diabetes Centre presented on the project she has been working on: telling the story of diabetes in a series of documentaries to be screened on the BBC.
So, first things first. I love this idea. I am a huge fan of having diabetes out in the ‘public’ space, pulling it out from diabetes groups and diabetes-specific forums, because in most of these cases, we’re preaching to the converted. It’s one of the reasons I love writing for Mamamia Women’s Network where I know that most of the readers probably don’t already have a connection to diabetes.
If these documentaries are screened on the BBC, imagine the audience! It is so refreshing to see people thinking outside the box and looking for ways to present to a new audience – and to tell stories, real stories of real people who actually live each day with diabetes.
Andy showed two short video clips from the still-in-development documentaries. As healthcare professionals on screen spoke about diabetes, I automatically prickled, my language and stigma sensors being alerted straight away.
I wasn’t the only one. In a room with two other diabetes advocates – Kim, Melinda Seed (Once Diabetes), as well as several very vocal health advocates and activists, there was a sense of discomfort at what we were seeing.
I inhaled – maybe ‘gasped’ is a better word – when one of the HCPs used the words ‘diabetes plague’ in his introductory words. There was an undeniable sense of blaming the person with diabetes in the words being used and the sentiments being expressed.
The Twitter conversation from both people in the room and those following along was honest and candid. And, quite frankly, it was uncomfortable too. Andy had disclosed that she has type 1 diabetes, and I didn’t want to be actively criticising the work of a fellow PWD.
However, I could not keep quiet either. When Andy came over to chat after her talk, we had a very open discussion. I was probably quite blunt in my comments.
It is not okay to use language that is stigmatising. The format of the information being presented (i.e. unscripted interviews) doesn’t preclude anyone from being courteous and respectful, and I don’t believe that PWD were being treated either courteously or respectfully in the way about which we were being spoken.
I understand that there is a desire for authenticity and genuineness when interviewing documentary ‘talent’, however it is possible to be clear from the outset that language needs to be respectful at all times. Not sure where to begin with this? How about the Diabetes Australia Language Position Statement which actually provides suggestions for inclusive, non-stigmatising language?
I think it is really important to acknowledge that the road to satisfaction in the way we use language that is inclusive and non-stigmatising is a very, very long one. Also, I genuinely don’t believe that there was any malice intended on the part of the film makers or the interviewees.
We also need to acknowledge that the language used in what has been (and many would argue continues to be) a patriarchal health system is entrenched in the thinking of many – it was part of their training and is a habit that will take time to break. But by acknowledging it, we are not saying it is okay.
As I said, I love the idea that diabetes is a topic for a documentary that is being made for a non-diabetes-specific audience. However, if those people walk away thinking that my healthcare condition is a burden to society (and therefore I am too!) or that they believe it is okay to continue to use words that stigmatise, then there is the potential for this work to do more harm than good.
And finally, a call to not only the coordinators and owners of this work, but to all who are developing any sort of health information using any sort of platform: talk to people with the condition. Lots of them. It is not okay to have one token consumer representative; there should be many – as many as (if not more than) any other expert being consulted.
Fade in to bedroom in middle of the night…
Diabetes: Helllloooooo! It’s me; Diabetes!
Me: Piss off!
Diabetes: Rude! You don’t like me very much, do you?
Me: Um…no…It is 3am and you have just woken me up. I guess you’re okay. I mean…I guess.
Diabetes: Pfft. You’re a lousy liar. I hear the words you use when talking about me. We should discuss your language. You swear like a trucker a lot of the time.
Me: My language? You want to talk about my language? It’s 3am. I’ll tell you what you can do with my fucking lang….
Diabetes: Yeah – that’s what I’m talking about…
Me: Well this has been fun. I might go back to sleep now.
Diabetes: Oh – I’m not done yet. We have so much to catch up on. Let’s talk.
Me: About what…?
Diabetes: I was wondering… Do you think there is any way that you could like me? Any way at all? What would I have to do?
Me: Is leaving me alone and finding a way for my beta cells to start working again an option? Could you do that for me?
Diabetes: Not so much.
Me: Okay. Is just being in the background and not bothering me and responding the same way to the same things each time an option?
Diabetes: No. Not really.
Me: Um…is never again waking me in the middle of the night a possibility?
Diabetes: Again, no – I get lonely and it’s fun to have you around when it is dark outside.
Me: Okay. Then to answer your question: no. I don’t believe there is any possible way that I could like you. In fact, I think that I will pretty much dislike you for the rest of my life. Which I hope to be a very long one. We have nothing in common and you have no redeeming qualities. So…
Diabetes: I’m sad to hear that, my friend…
Me: I am not your friend.
Me: That is not a word.
Diabetes: Totes is.
Me: It is not. And neither is ‘totes’ unless you are referring to a bag.
Diabetes: You know; you’re actually kind of annoying.
Me: Pot. Kettle. Black.
Diabetes: Use verbs!
Me: I had no idea that my diabetes was so into grammar and language.
Diabetes: Yeah – I love it. And punctuation.
Me: You do?
Diabetes: Yep. I do.
Me: Wow. That’s kind of interesting…
Diabetes: It is, isn’t it?
Me: I love punctuation, too.
Diabetes: I know. I can’t decide if my favourite punctuation symbol is the interrobang or acclamation point.
Me: Oh – they are two of my favourites as well! … So, what else do you want to say to me?
Diabetes: Oh – just this…You’re low and probably should do something about it.
Me: What the fuck‽
Diabetes: Renza! Language! Drink some juice. (But excellent use of an interrobang!) … Also, if you find yourself talking weird punctuation marks with your chronic autoimmune health condition – I’d suggest that you think about what could be going on with your glucose level. And then do something about it.
Renza: Do you know what this punctuation mark is:
Diabetes: No. What is it?
Renza: It’s a sarc mark. And this one? This one is a snarc mark.
Renza: You should consider pretty much everything I ever say to you to conclude with one of those – take your pick.
Diabetes: That’s not very nice.
Renza: Neither are you.
Diabetes: Drink some juice, you moron.
Renza: Don’t tell me what to do! Great; now I’m wide awake.
Diabetes: And it would appear my work here is done. See ya…
Fade out to sound of expletives, all punctuated with a certitude point.
It’s Drop the Jargon Day. Here’s one I prepared earlier about this very topic.
So today, I am taking extra care about the words I use and the things I say and write when talking diabetes.
I know I am guilty of being very lingo-istic at times. I read through this blog and see the jargon sprinkled through posts, abbreviations and slang terms littered everywhere. (Huge thanks to someone who commented on one of my posts last week about how I need to not use anagrams so much!)
I catch myself in meetings using shorthand that makes sense to me, and correct myself by explaining terms may be like a second language to those of us required to speak it fluently, but a foreign language to those who don’t.
So today, I am going to use pictures to illustrate this issue. Because a picture tells a thousand words. And a cartoonist is far more amusing that I could ever hope to be! (Click on images for source.)
So many things on my radar at the moment. Here is just a taste!
Gila Monster and diabetes
Over the weekend, federal health minister, Sussan Ley announced the drug Bydureon would be listed on the PBS from 1 September 2016. Bydureon is a once-weekly injection used in conjunction with oral medications for people with type 2 diabetes.
Fun fact: Bydureon is the brand name for exenatide, which is a synthetic form of a substance found in the saliva of a lizard – the Gila Monster. (Please can we talk about how someone worked out that this would be a good treatment for diabetes?)
News from ACBRD
The team from the Australian Centre for Behavioural Research in Diabetes don’t sleep. At least, I am pretty sure they don’t. My office is on the same floor as them and I can tell you that I’ve never seen any of them asleep at their desk. Instead, they work really hard and produce things like these:
Centre Foundation Director, Professor Jane Speight, is straight talking at the best of times, and her commissioned article published on Monday in the Medical Journal of Australia pulls no punches in putting forward a strong case highlighting the need for behavioural innovation in the treatment of type 2 diabetes.
Dr Jessica Browne from the Centre has been leading work on diabetes and stigma, and this piece published recently in Diabetes Care is about the development of the Type 2 Diabetes Stigma Assessment Scale.
Over-achievers the lot of them. And how grateful I am! (If any of you are reading this, stop it now and get back to work!)
AADE / DSMA / diaTribe / Language
I cannot even begin to express how excited I was last week to see so much focus on and discussion about diabetes and language at last week’s American Association of Diabetes Educators conference.
I sat in my office in Melbourne last Friday morning in tears as on the other side of the world in San Diego (where it was Thursday evening) Cherise Shockley directed a tweet chat about language and diabetes. (And a huge thanks to Cherise for reaching out before the chat!)
In this piece from diaTribe, Kelly Close also wrote about language. Check out this BRILLIANT ‘Diabetes: Starting the Conversation’ infographic. I love this SO much!!
I am always on the lookout for diabetes blogs to read and share and this one is just brilliant! Molly Schreiber’s blog, And Then You’re at Jax, is about living with not only type 1 diabetes, but also rheumatoid arthritis. (Another one of us who collects autoimmune conditions…)
For beautiful, sensitive and honest writing, this is where it’s at! Check it out here.
ADS ADEA next week
Next week is the Australian Diabetes Society – Australian Diabetes Educators Association Annual Scientific Meeting on the Gold Coast. Program is live here.
I’ll be writing and tweeting from there for a couple of days next week. Keep an eye out on the #adsadea2016 hashtag to follow along!
New resources for young people from the NDSS
There is little more satisfying that seeing the end result of something that has taken a lot of effort, time and expertise. I am thrilled to show off these beautiful resources that have been produced out of the NDSS Young People with Diabetes Program that I manage as part of my day job.
They look beautiful (the graphic designer is an absolute gem!) but even more importantly, they are full of important and useful information
An online version of Mastering Diabetes can be found here.
And an online version of Moving On Up can be found here.
More about the inclusiveness of the DOC…
My post about the DOC from earlier in the week has generated a lot of really interesting and valuable comment, both on this blog, on Twitter and Facebook and with many messages sent to me privately. Thanks to everyone who has contributed and, mostly, thanks to everyone for being so positive and respectful in their comments.
The purpose for writing was to try to encourage a discussion about how and why some people feel more included than others. I know this is not the first time this has come up and I doubt it will be the last.
I have noticed some common themes in how people feel and am trying to write something about that, but keep feeling clumsy and inarticulate. I’ll keep trying and see if I can make sense of anything – mostly in my head!
Banjos, banjos, banjos
Last week I went to two concerts at the stunning Melbourne Recital Centre. Both showcased banjo players and both were brilliant. One of the concerts was TWO banjo players and nothing more. I don’t know who I am anymore…
But I can’t stop listening to this at work.
Last night, I was the ‘here’s one we prepared earlier’ on a panel discussing CGM technology. The audience was all healthcare professionals – mostly DEs, but some dietitians, RNs and also a GP-in-training (so much yay to him for coming along!).
I love being in the room for these events! I wrote about my last experience giving the same talk here. I cannot speak highly enough of the two experts on the panel last night. Dr Peter Goss – who spoke at the last one of these events – is what I would call a disrupter in the diabetes healthcare space and, honestly, all the power to him. He may ruffle some feathers with his sometimes unorthodox approach, but it is undeniable that he is a champion for kids and teens (and young adults) with type 1 diabetes. Also on the panel was A/Professor David O’Neal who is best described as a truly awesome endo (I have heard that from every single person I know who sees him as their endo) and an absolutely brilliant mind. His expertise in diabetes tech is second to none and he is genuinely interested in how the technology can safely, efficiently and effectively be incorporated into the lives of people living with diabetes.
I know that all sounds rather effusive. But I need to point out that they are remarkable. And that they are the sorts of HCPs you want on your side if you are a person with diabetes.
Because now I am going to talk about language and why I pulled them up a little bit after we all did our presentations and sat on the stage ready to answer questions from the audience.
As happens frequently when I am in the room with a group of healthcare professionals, the conversation turned to language. Okay, I made that happen. In fact, the words I used were ‘I’m going to hijack this conversation because we really need to talk about language here.’
One of my biggest pet peeves is the jokey, and somewhat snide, comments made about people with diabetes making up numbers in their diabetes log books. Because, it’s not a joke. It’s not something for HCPs to roll their eyes over and dismiss as ‘non-compliant’ behaviour.
The word that was used for PWD who make up numbers in their books was ‘fakers’. I cringed the moment I heard the word. And cringed even more at the audience’s response – laughter, heads shaking from side to side and knowing looks. I looked around the room and knew that we would be talking about this later on in the evening!
As I pointed out when the panel was seated on the stage, I absolutely did this. And I was incredibly good at it – different coloured pens, splotches of blood on the pages, dog-eared corners of the book. Once, I even splattered a few drops of juice, because on that particular page, I was having a lot of lows and I thought the juice would make it look more authentic.
Now, let’s all just remember for a moment that I was diagnosed as an adult. This wasn’t insolent teenager behaviour. This was a woman in her mid-twenties who was terrified of disappointing and being judged by the HCP to whom she would be handing the grotty book and its made up numbers.
I told the room my story of this last night and there was laughter – because the way I spoke about it was amusing. It was a cheeky anecdote. But at the time, it wasn’t funny. I was scared, I hated checking my BGL, I was paralysed by numbers that didn’t make sense and I didn’t know what to do about it. So I lied. Of course my HCPs knew that. And I knew my HCP knew.
But the question is about WHY people do this. The discussion needs to stop being about diabetes at that point, because really, managing BGLs and most other diabetes tasks is not the issue here. The issue is distress, anxiety, fear. And, in my case, I felt desperate.
One of the panellists made the point that the reason that he brought it up was because HCPs need to know what to do when someone is ‘faking’ their numbers. He’s right. I completely agree. And then there needs to be understanding of how to approach it, which is likely to be different with each PWD.
For me, it took until I found a HCP who I felt I could trust – one who wouldn’t judge the numbers that were out of range (which one HCP always circled in red pen, making me feel even more like a delinquent adolescent) – and was interested in knowing what was stopping me from feeling able to check my BGL.
When we worked through that, I was better equipped to not only regularly check my BGL, but also to deal with the numbers and act upon them. I came to understand that a number was nothing more than a piece of information that I could use to make a treatment decision – not an indication of me being a good or bad person.
Language does matter. And words count for a lot. Using the word ‘faker’ in this context is loaded with judgement and accusation, and even if that is not the intention, it made me – a person with diabetes – feel very uncomfortable. But mostly, it fails to consider the real problem at hand which is not that a PWD is making up numbers in a book. It is why they feel the need to do that.
The contradictions in diabetes are complex and confuse my little mind sometimes. Today is one of those days.
Getting the message that diabetes is serious – and needs to be taken seriously – is sometimes messed up in our determination to show that diabetes won’t stop us from being superheroes. In our proverbial capes*, we do amazing things; we are brilliant; we advocate; we inform. All while pretending to be a pancreas.
We use language that empowers us and makes others see us as forces with which to be reckoned. I say I live with diabetes (often saying I live well with diabetes, never struggle with it. I refuse to even suggest for a minute that I am suffering with or from diabetes and will correct anyone who suggests otherwise.
But is that undermining the seriousness of it? And is it ignoring the days where it does seem like a battle – and an uphill one at that.
I refer to diabetes as a condition, never a disease. Is that the right terminology? And why do I do that?
According to this piece at Health Writer Hub a disease is an …’ abnormality in systemic function…that causes both physical and emotional signs and symptoms’. A condition is …’an abnormal state of health that interferes with the usual activities or feeling of wellbeing’. Both are actually correct when talking about diabetes, and yet I (and many others) object to using the term disease.
Perhaps we don’t want to be thought of as ‘diseased’ or as if there is something wrong with us and ‘disease’ does suggest that.
We want people to think we are superheroes who manage to not only thrive and excel with the condition (disease?) we have been dealt, but also demand that they don’t think of us as any different to everyone else and are given the same opportunities and choices.
Are we doing ourselves a disservice by appearing so ‘in control’ and, dare I say it, ‘normal’, when there is truly nothing normal about having to pretend to be an internal organ, day in day out?
I don’t for a minute want to stop being the empowered, confident, secure and capable person I am. But sometimes I do feel that in all my cheerleading efforts, I sometimes forget – or rather refuse to admit – that it can be tough.
And mostly, I wonder, and fear, that if we all are making diabetes look so easy to manage and impact us in such insignificant ways, do others not see and understand the urgency that we feel every single day in our desire to make things better? Who needs a cure if we look so bloody happy and competent with our little condition?
It’s day 3 of Diabetes Blog Week, with thanks to Karen from Bittersweet Diabetes. And it’s hump day, so the week is half over. I am on my way to Sydney for meetings all day, but will be making sure that any transit downtime is spent finishing reading yesterday’s posts. And today’s too.
Today’s prompt: There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.
I have written about language many, many times here. So today I thought I’d vlog. Happy viewing.
And here it is again: the Diabetes Australia Language Position Statement.
Growing up, when I infrequently visited our family GP, he was always referred to by his first name. I do remember when we were really young putting a ‘Doctor’ before his first name, but we never referred to him by his surname. He was always ‘Dr Sam’ until he became just ‘Sam’.
Since being diagnosed with diabetes and becoming a frequent flyer of healthcare services, I have only ever addressed HCPs by their first name. (Except my endo who frequently gets referred to by her first and middle name together, but that is because my kid has the same middle name (named for my endo) so when speaking to and of each other, we use both names..)
When meeting a new HCP, I will walk into a first appointment, hand extended as we do our introductions. I always say, ‘Please call me Renza,’ although I don’t know that I have ever had a doctor not call me by my first name in the first instance. In fact, usually, when called in from the waiting room, they do so by using my first name.
So it’s probably not surprising that I found myself prickling a little as I read this article from a couple of months ago, written my an oncologist from the US. James Salwitz MD tells the story of a new patient – an elderly man who attended with his adult son. The son insisted on calling Dr Salwitz* by his first name which, apparently, was a little unnerving for the doctor. He referred to it as a cultural faux pas, suggesting that it was being done to… ‘diminsh the power and value of my experience, control and guidance.’
Now, I know it is possible that there are some cultural differences here. In Australia, we seem to have a far more relaxed attitude about being formal. And we also don’t necessarily consider that using someone’s first name shows a lack of respect as suggested by Dr Salwitz and some of the commenters at the end of the piece.
I asked a few people – also regular users of healthcare – and most said they used only first names. A few said they would always refer doctors by their titles, but nurses by their first names. This raises another point about the hierarchy of healthcare professionals. I’m not sure why one would be more inclined to use Dr Diabetes for the endo, but not Ms/Mr Diabetes for the nurse.
I treat and regard my healthcare team with nothing other than respect. I speak to them with respect, I respect their time and how busy they are, and I recognise their professional expertise. How I address them does not diminish this respect, nor undermine their qualification.
What was not clear in the article I read was how Dr Salwitz addressed the person he was treating (or his son). If there was an expectation from doctors that they are addressed by their professional title, then surely they should demonstrate the same courtesy (if that is what it is) and address their patients by their title and surname.
Any discomfort can be solved at the first greeting. This is one of the reasons the #HelloMyNameIs campaign is so important. Clear introductions from the beginning establish how people would prefer to be addressed. If unsure, the question ‘Is it okay for me to call you by your first name’ can be asked by both physician and consumer.
Feeling comfortable in our medical appointments is necessary if we are to get the most from the limited time we have before our HCPs. And for that to occur, there needs to be mutual respect and no imbalance of power. I feel very fortunate to have that with my team.
*Thought is best to refer to Dr Salwitz by his title throughout this post.
I frequently refer to myself as ‘the difficult child’ – not so much in my family setting, because there I am clearly the perfect daughter (just ask my sister!). But professionally, I am sometimes difficult because I have been known to ask a lot of questions, think outside the square and am a risk taker.
And I would also be termed difficult in other settings.
For example, I am, according to this article, what would be considered a ‘difficult patient’, a term that I really struggle to understand.
Anna Reisman MD, an associate professor at Yale School of Medicine, wrote the article, sharing a recent conversation she had with some med students who asked ‘can’t these patients stop with all the questions?’ instead, wishing for patients who simply listened and did what they were told. They wished for ‘easy patients’ rather than ‘difficult’ ones.
Living with diabetes can be difficult. It doesn’t behave how we would like it to or how we expect it to. It makes us frustrated and angry and sad and annoyed. It makes us want to try different things as we hope to get better results and see in-range numbers. And sometimes – often – we are the ones searching, Googling, asking others and wanting for more and better and different treatments.
When I ask questions or walk into a HCPs office asking to try something new, I am not being difficult or questioning their expertise. I simply want a discussion about how I can improve my health.
The only reason I manage my diabetes the way I do is because I researched, asked questions and told my HCP it was what I wanted to do. I wasn’t being difficult when I first raised the idea of ditching MDI for a pump. Nor was I being difficult when I asked about CGM. Or when I wanted to change to a different insulin.
I was looking for ways to make my diabetes less difficult – because it is a difficult monster! It is not the person being difficult. It is the condition. And this clarification is important.
I think frequently the term ‘difficult’ is used instead of the word ‘empowered’ or assertive – neither of which are interchangeable with ‘difficult’.
In the article, Dr Reisman offered some excellent advice to the med students explaining why patients who do ask questions and want to take charge should be celebrated – not discouraged. And she ends the article with this pearl:
‘Don’t dread patients bearing questions, I told my students. Welcome them. They’re some of the best teachers you’ll encounter.’
I can’t think of a better way to explain it!
I read a few other pieces by Dr Anna Reisman and this is another brilliant take on the expertise of patients.