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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.

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Sometimes, something happens at a diabetes conference that I need to sit on for a while before I can write or talk about it. At ADA this year (almost six weeks ago now), there was a moment that has stuck with me and I think it’s time to talk about it.

I was sitting in the front row of the language session – because, of course I was – eager to hear from the all-star panel that was going to be looking at the language issues from the perspective of the PWD and HCP, as well as look at the role HCPs play in addressing diabetes stigma and how they can improve communication. I loved the well-rounded approach the session was taking, and settled in for a couple of hours of discussion.

The line-up was a veritable A-list of the best voices in the space. We had ‘Jane squaredhttps://diabetogenic.wordpress.com/2019/06/08/greetings-from-san-francisco-and-ada2019/, with Dickinson and Speight book-ending the program, Joe Solowiejczyk giving the consumer side and Kevin Joiner providing strategies for dismantling stigma.

Jane Dickinson has been an absolute champion of the diabetes #LanguageMatters movement in the US. And it was in her introductory session that the moment of today’s post happened. Jane was speaking about how HCPs see diabetes and people living with the condition. And she showed this slide:

I can’t remember if Jane read out the quotes. But I do remember how I felt as I read them and took in what they meant. I felt beaten.

As people living with diabetes, so many of us have firsthand experience of hearing these sorts of comments directed to us. Or we have had friends with diabetes tell us their tales. Or we have heard passing comments from HCPs expressing similar sentiments. The idea that we don’t care, have brought it all on ourselves, deserve what we have coming – and conversely, don’t deserve care – us pervasive through the diabetes landscape.

This is how diabetes and those of us are living with it are perceived. And it is heartbreaking.

There is no consistency as to who is making these comments – healthcare professionals from all different disciplines, at different stages of their careers, with different experiences. Some work in tax-funded settings, others in private settings. They are considered the best in their field, they are held up as examples of excellent care. Other HCPs refer PWD to them.

Often, I hear people say that these attitudes are really only ever the thoughts of ’old school’ HCPs who have been around for a long time; it’s a throwback to the patriarchal attitudes of healthcare – to days when doctor or nurse knows best and ‘patient’ does what they are told, and if they don’t, they get told off, while being written off as not caring for themselves.

But that assessment is actually not true at all. Some of the most sensitive and tuned-in HCPs I know have been working in diabetes for many, many years.

And some are yet to have even started their career. In exactly the same way that diabetes doesn’t discriminate, it seems that these horrid attitudes and stigmatising comments can come from people at every stage of their career.

Here is the whole slide.

That’s right. These comments came from future nurses. They hadn’t even set foot on the wards yet as qualified HCPs. But somehow, their perceptions of people with diabetes were already negative, and so full of bias. Already, they have a seed planted that is going to grow into a huge tree of blaming and shaming. And the people they are trusted to help will be made to feel at fault and as though they deserve whatever comes their way.

This – THIS – is why I am not stopping banging on about language and diabetes. THIS is why I get frustrated when someone responds to – and reduces – a discussion about this issue with ‘But I/my kid is happy to be called (a) diabetic’. THIS is why I constantly highlight when people or organisations or people in the media are using stigmatising or negative language.

The words we use shape the attitudes we have, and the attitudes held by many about diabetes are disgraceful. Imagine if instead of mindsets like this, HCPs came out of their training with the idea that people with diabetes need support, education, information, compassion and skills to best manage a condition that no one, but no one, ever asked for Just think about how different – and better – that could be.

The ADA session ended perfectly – with Jane Speight (my personal diabetes #LanguageMatters hero) playing the Mytonomy ‘Changing the Conversation’ video. So, here’s that video again. Watch it. Share it.

 

Belle Gibson has been pretty much universally shamed for her claims that she was able to cure her cancer by ignoring medical treatments, instead using diet and alternative therapies.

We question (as we should) the validity of curing conditions such as autism with specific diets; epilepsy with light therapy, and asthma with reiki.

Anti-vaxxers are called out (although not enough) for their claims that pixie dust and sun-charged crystals will protect their darling, perfect offspring, and that injecting toxic toxins of toxicity is a waste of time that only serves to line the pockets of BigPharma. And Governments, who are in the pockets of BigPharma. (It must be really crowded in those BigPharma pockets…)

(Soon to be former) US Democrat presidential-nominee Marianne Williamson added her voice to the throng of lunatics back in 2009 when she claimed that vaccine-prevented diseases are insignificant, and that god will protect us as long as we pour his love over our immune systems. I’m still trying to work out: 1. Where to get my dose of god’s love (my pharmacy doesn’t seem to have it listed on their website) and 2. How the fuck I’m meant to administer it to my already over-sensitive immune system. It’s likely to self-combust.

Main stream press unfortunately does give voice to these fools, but thankfully, the voices of science – you know, those that actually understand and believe in real science-based evidence – are loud and clear in their condemnation of charlatan claims.

Of course, diabetes isn’t immune (autoimmune?) from these sorts of claims. I still regularly show this ridiculous Khloe Khardashian claim klaim that kumcumbers kure diabetes when explaining how so-called wellness gurus (or reality television stars) infiltrate – and influence – what we know actually works as a treatment for diabetes.

And the delightful cinnamon cure-all gets rolled out at every possible moment.

Marrakech 2013: holding the cure in my hands.

But what happens when there is evidence showing something that challenges what we have long-held to be true means we do need to sit up and listen…but it is being communicated in a way that could potentially be more damaging than beneficial?

We are hearing more and more that there is evidence to support that type 2 diabetes can be ‘cured’ and put into ‘remission’. I am not looking at the science here; I do understand that there is a growing body of evidence to show that for some people, a very strict low-calorie eating plan can mean that people see in range glucose levels.

This is being hailed as positive, but where I start to feel uncomfortable is when this is reported in the mainstream media as a cure, which is often how it is touted. Other words that seem to be bandied about are ‘remission’ and ‘reversal’

But is it a cure? Is type 2 diabetes able to be truly reversed or put into remission? Because that is how I am seeing this presented with very little question.

As ever, language matters. Using the word ‘cure’ suggests that a health condition is fixed, forever gone away. That is not what is happening here.

Remission, when used in the context of cancer, is not an absolute. There are stages to remission. Partial remission suggests that treatment may be ceased as long as the cancer doesn’t grow again. No evidence of cancer in scans and other examinations is referred to as complete remission.

In diabetes, remission and cure are used to suggest that glucose levels return to ‘normal’ levels, (i.e. those seen in people not living with diabetes), usually because something has happened – the person lost weight, changed the way they are eating, increased their exercise etc. And this happens because people followed a treatment plan. What happens if they stop that treatment? And how long will this treatment continue to work this way? Does it mean that they no longer have any of the concerns that occupy the hearts and minds of people with diabetes?

Just as in cancer – and in other conditions – some people respond to treatments better than others do. When the media says type 2 diabetes can be cured or put into remission with these treatments, there is never any nuance to that statement, explaining what that means. No one talks about the non-modifiable risk factors that play a huge part in type 2 diabetes.

The last thing we want to do is for those who don’t see the results promised – cure! remission! – is for them to feel that they have failed. There is already too much of that in diabetes…especially in type 2 diabetes. (This never happens in cancer. If a treatment doesn’t work, the person is not told they have failed.)

The words we use do matter. How we are communicating these new treatments for people with type 2 diabetes is important. We need to remember that these treatments will not work for everyone and it is never okay to make people with type 2 diabetes feel responsible if they don’t work for them, or that they haven’t tried hard enough. Or that they haven’t wanted it hard enough.

More musings from ADA, this time following yesterday’s diabetes-related complications session.

DISCLOSURES

I am attending ADA as part of my role at Diabetes Australia. My economy flights and accommodation have been covered by the organisation.

Language matters. I feel I’ve said it so many times, and yet I still have people asking me why it is so important. So, I’m revisiting this post from just over twelve months ago which explains just how the words we use to talk about diabetes has an incredible flow on effect. Read on…


I had a great conversation the other day with someone who was interested to talk about diabetes and language with me. ‘I’m trying to get a better grasp of why it’s something so important to you, because, quite frankly, I couldn’t care less what people say about diabetes.’ 

This isn’t the first time people have asked me this. And it’s certainly not the first time I’ve been asked why I spend so much time speaking about diabetes language matters.

I know the reasons, but to be perfectly honest, I’m not sure that I have them especially well mapped out when I need to explain them. So, let me try here.

There is a tangled and complicated link between the words used when talking about diabetes, and how we feel about it and how diabetes is perceived by others. That link then goes off on all sorts of LA-freeway-like tangents to include diabetes and stigma, and discrimination.

The effects of how we frame diabetes can be felt by us individually. But they can also be far reaching and affect how others feel about diabetes.

We know that language has the potential to make people with diabetes feel judged and stigmatised. In fact, most PWD I know have at some time or another faced someone speaking to them using Judgey McJudgeface words. Of course, we all respond differently to this. For some people, it’s water off a duck’s back. They couldn’t care less what people say and just ignore it. For others, it’s almost a challenge – they use it as motivation to prove that they ‘won’t be beaten’.

But that’s not the case for everyone. For some people, it can be absolutely paralysing.

Fear of being judged and shamed may lead to some PWD to not wanting to attend HCP appointments and, as a consequence, falling behind on complication screening. Some PWD may not even tell their loved ones they have diabetes for fear of being judged. I have met PWD who made the decision to keep their diabetes a secret and for years, not telling another person. This can add to feelings of terrible isolation.

When diabetes is spoken about in stigmatising and demeaning ways, this leads to the spreading of misinformation. And this can have far reaching consequences.

We know that kids with diabetes may be teased by their schoolmates. Their teachers may not respond appropriately to diabetes because of the way diabetes is framed in the media or by others. We can’t really blame teachers. If diabetes is punchline fodder for every B-grade comedian, or an excuse to point fingers at those living with it by every tabloid news outlet, how can we expect anyone to take it seriously?

(And if right now you are thinking ‘This is why we need to change the name of type 1 diabetes’, stop it! People with type 1 diabetes shouldn’t be teased or mocked or judged, but neither should people with type 2 diabetes. This isn’t about people understanding the differences between type 1 and type 2 – this about understanding diabetes.)

The language we use when talking about prevention in diabetes – whether it be preventing type 2 diabetes or preventing diabetes-related complications – means that there is an underlying idea that developing type 2, or complications must be the fault of the individual. ‘If you can prevent it and haven’t, it’s your fault. You obviously lived an unhealthy lifestyle/are lazy/didn’t listen to your doctor/failed to follow instructions/refused to do what you were told etc.’.Can you imagine hearing that, or feeling that is what people think about you – all the time? This is the language – these are the words – used to talk about diabetes.

A couple of weeks ago in the UK, it was Prevent Diabetes Week. I saw countless tweets from people urging, begging, pleading with others to remember that type 1 diabetes can’t be prevented and the week refers only to type 2 diabetes. I wonder if those tweeting realised that comments such as these actually contribute to the stigma associated with type 2 diabetes? Of course type 1 diabetes can’t be prevented. But in many cases, neither can type 2 diabetes. There are so many non-modifiable factors associated with a type 2 diagnosis – factors beyond the control of the individual.

But let’s look beyond individuals, the health system and the education system for a moment. What else happens in other settings when diabetes is spoken about in stigmatising ways?

Health organisations, including diabetes organisations, frequently seek donations from the public to continue the important work they do. There is only so much money in the donation pie, and yet there are more and more competing organisations representing people with different health conditions wanting a piece of that pie.

Donations are harder to come by from the general community when there is the idea – the wrong idea – that diabetes is a largely preventable lifestyle condition that is the fault of those diagnosed. There is not the idea that people who have developed cancer brought it on themselves, even though we know that some of the risk factors associated with a breast cancer diagnosis are the same as for type 2 diabetes.

Research dollars for diabetes are far less than for other health conditions. We see that every year when successful NHMRC grants are announced. Diabetes is the poor cousin to cancer research and CVD research.

Diabetes is just as serious as any other condition that is worthy of research dollars and fundraising dollars. Yet because of the way we speak about it and the way diabetes as a condition has been framed, there is a perception that perhaps it isn’t.

Words matter. Language matters.

So, what I want to say to people who think that talking about language and words is a first world problem that only occupies the minds of the privileged is this: I acknowledge my privilege. But this isn’t simply about words. It’s about perception.

Until diabetes is considered the same way as other conditions that are taken seriously and thought of as blameless, the trickle-down effect is people with diabetes will continue to feel stigma. Diabetes will continue to be the poor cousin of other health conditions and diseases because there is the misconception it is not as serious. People will not as readily make donations towards fundraising initiatives. Research dollars will continue to fall short, instead going towards ‘more worthy’ conditions.

That’s why I care so much about diabetes language. Because, language matters… so much.

I have some illuminating discussions with healthcare professionals. After I’ve had an in-depth conversation, I find myself going over things they have told me and discover that I have always learnt something new about what it means to work in a system that is, in many ways, broken. I learn how their approach to healthcare changes year by year as they try to do their best for the people they see each day. And I realise that I never, ever could do their job.

Other times, I shake my head a little because I wonder how their understanding of the day-to-day challenges of living with a chronic health condition is so far removed from reality. In these cases it’s almost as though we are speaking different languages.

Recently I spoke to a group of HCPs about those differences. I focused on how we manage to fit diabetes into our busy lives in ways that HCPs never can imagine and how the neat text book description of life with diabetes is very different from the mess that we are trying to tame each day. I spoke about how what they say can be read in a multitude of different ways by those of us on the other side of the consultation, and to think about words carefully. And I spoke about how although some education of HCPs about diabetes suggests that there is a one size that somehow fits us all, the truth is that we require our education to take into consideration every size and shape possible and for it to be delivered accordingly.

A doctor came up to me afterwards and thanked me for my talk. ‘Thanks for making me think differently about some things,’ she said. I loved that she said that, and I told her so. ‘Actually, that’s always one thing that I hope to get when I hear someone speak about diabetes – a new perspective or way of thinking about something that I think I have all worked out.’

We chatted a little about what she’d heard that had surprised her and would she would now be thinking about in other ways. I may have high fived her when she said that she would now be taking a lot more care with the language that she uses. ‘I had no idea that what I was saying had such stigma attached. I honestly thought I was saying the right things. I never meant for people to feel blamed, but I can see now how I could have come across that way.’

That’s been one of the challenges of the #LanguageMatters movement in diabetes. As we’ve tried to bring HCPs along for the ride, we’ve had to do it in a way that doesn’t make it sound like we are berating them. I do and will continue to call out language that impacts on PWD negatively because it does matter. Language has the power to make us feel like we can take on diabetes or be defeated by it; it can make us feel like we are doing all we can and that is enough, or that we are failing and will never do enough. Again, for those down the back – language does matter. But I truly have never believed that HCPs use language with any malice or intent of harm. It’s often just because they repeat the words and phrases that have always been used.

I explained this to the doctor and we spoke about how to get the message across in a way that highlights and promotes collaboration. After we’d been speaking for about 10 minutes, she said ‘I have a question for you,’ I nodded, eager to hear what she wanted to ask. ‘What’s the best kept secret in diabetes?’

I was startled. What an interesting – and frankly brilliant – question. I’d never been asked that before and I wanted to think about it a lot. Poor woman – I’m sure that she just wanted some sort of quippy response and to be done with it so we could go home and eat dinner.

‘Wow!’ I started, excitedly. ‘I love this. Are there any secrets to diabetes?’ I started a checklist, going through some ideas.  ‘Is it peer support? For some reason, a lot of people don’t know just how widely available this is. Or maybe it’s how people can drive their own healthcare by setting the agenda. I frequently have people tell me that they just do what their doctor tells them (or rather, say they will) because they didn’t realise that healthcare could be an open and joint dialogue. In diabetes, maybe it’s all the clandestine DIY stuff that is going on which is so apparent to those of us who play on Facebook and Twitter, but maybe not to those who are not online as much. I know it’s NOT cinnamon. Actually – maybe it’s the whole thing about how when living with diabetes, or other chronic condition, our mental health is rarely taken into account, so perhaps understanding that and being referred to relevant services is the secret. It happens to so few of us…’

I stopped, because I could sense that there was so much I wanted to say, but I truly didn’t have an answer. ‘I don’t really know,’ I sighed. ‘I wish I did. I wish there was one…’

We said our good byes and I started to walk away before the doctor called after me: ‘You know what the best kept secret in diabetes is?’

I spun around. ‘What?’ I asked. I admit that I was hoping for a key that was going to unlock the mysteries of diabetes and suddenly make it a lot easier to live with.

‘You,’ she said. ‘And others like you. If only doctors like me took the time to listen to you all we would know a lot more and probably do a much better job.’

I smiled at her. ‘We’re not really a secret,’ I said. ‘We’re actually quite out there. You’re just not looking in the right places. Or asking the right questions.’

I gave her a little wave and left the room.

This post marks one thousand posts here on Diabetogenic*. That’s a lot of senseless rambling, ragey-moments, times celebrating and despairing about diabetes, and links to brilliant ideas and post… or to things that have either amused, frustrated, delighted or annoyed me.

A thousand posts in and diabetes is still a constant in my life (damn it). And I remain not good at diabetes…and I have many of those thousand posts to prove it.

There are clearly some recurring themes that I write about. I say that I am a one trick pony, but perhaps that’s not completely true. I seem to have a few tricks up my sleeve, really. And now I’m confused, because ponies don’t usually have sleeves and my metaphors are very, very mixed.

Here are the things that seem to have taken up a lot of writing time and words over these thousand posts…


Peer support

Most of the time, I am pretty positive about living with diabetes. Let me be clear: that doesn’t mean I love it, or even like it. But I feel that generally, I know where it belongs in my life and it seems to fit in that place as well and happily (begrudgingly) as it can.

I know that one of the reasons that I feel this way is people in the diabetes world I am lucky enough to call friends and peers. Online friends, in real life friends and those who cross both boundaries are a critical part of my living-well-with-diabetes strategy. Knowing that there are only a very few places around the world where I couldn’t find someone from this community to have a coffee/tea/prosecco/mojito with gives me an incredible sense of comfort. (And reassurance in case of diabetes emergency…)

I say that my peers with diabetes help me make sense of my own diabetes and that’s true. Knowing people who understand innately what it is like to share a body with diabetes means that I never feel alone. Diabetes is so isolating at times – even for those of us surrounded by great people who support and encourage us. As much as I need those people and am grateful for them, it is others living with diabetes that help me realise that I am never, ever alone in dealing with the ‘diabetes things’.

The diabetes online community is made up of lots of people and not all have diabetes. We each bring our own experience and perspective to it. I’ve learnt so much from those living arounddiabetes and how they incorporate it into life, because it comes with its own set of challenges and victories. That is why the community is so valuable – its diversity and range of experiences and perspectives.

I regularly talk about the value of community and diabetes peers and finding our tribe. It can take time to settle into just who and what that looks like, and it changes because there are always new people around. But it is so worth it. My tribe? I love them so hard.

Nothing about us without us

I am not the tattooing type but if I was, I think that I would have this phrase inked on my body somewhere (or maybe I’d be really pretentious, and have it written in Latin: Nihil de nobis sine nobis, according to Google translate.) It remains a frustration of mine that this isn’t the starting point for pretty much anything and everything to do with diabetes care. The fact that we still need to fight for a seat at the table – or a ticket to a diabetes conference – is, quite simply, not good enough. Having others speak for us, on our behalf thinking they know what we need, is offensive.  It should never be the case that non-PWD voices speak for us or over us. Ever. Our stories are powerful, but they are ours and we should have the platform to tell them in our own way; in our own voice.  Tokenism is rife and sometimes, that frustrates me even more than when we are completely excluded. The delusion of inclusion is, I think, worse.  Whilst there may have been some strides made to true co-design and inclusion, we have not come far enough and until we get this write, I’ll have a lot of content fodder for this blog.

Food

I like food. I write about it a lot. And I want to be Nigella. That’s really all I have to say about it right now…

Waffles in Brussels. Both were excellent.

More than numbers

Apparently, stating the obvious is still necessary in diabetes. We are more than numbers; our A1c does not define us; our worth is not wrapped up in our glucose levels. We have been saying these things for years…decades…and yet there are still times that this is what we are reduced to.

New treatments, devices, drugs, education programs are measured in reduction of A1c. Perhaps this is because it can be measured, but talk about only getting part of the story. I can’t help but think that if PWD were part of establishing research protocols, there may be far more than numbers to assess the success of a treatment or therapy. (See also: nothing about us without us…)

Women’s health

In recent years I’ve written about the issues specific to women, health, sex and diabetes a number of times because there is so little out there about it. And it seems it resonated with a number of women who wrote to tell me (and the HCP who saw me in the fresh produce section at my local Woolies and yelled how she loved my idea of giving lube in diabetes event bags).

Anyway…talking about the stuff that may not be the easiest is important. It’s the only way we get remove stigma and encourage people to share their stories. Which helps others. That’s why I have openly written and spoken about miscarriages and infertility. And eating disorders. (I know – not an exclusively women’s health issue.) There is nothing shameful or embarrassing about these topics. Other than we don’t speak about them enough.

Learning from and supporting others

The Interweb Jumbles I write are my favourite (and cheat’s) way of pulling together all the things I’ve seen that have interested me and leaving them in future place for (my) future reference. Plus, I love sharing what others in the diabetes community and world are doing.

I have always benefited from the generosity of others in this community who have shared my work and I pay that back whenever and wherever I can. Supporting each other is critical.

There’s so much going on in the diabetes world all the time and I highlight the things that resonate because I think that if they mean something to me, they may mean something to someone else, too.

Science. Science. Science

From pseudo-science rubbish, to ridiculous made-up diabetes cures to anti-vax delusions. How much writing material have they provided!

I live in hope that one day – and may that day be soon – we won’t still have to read about these charlatans trying to convince us that all that ails us can be cured with fairy dust and positive thought, or that vaccines are evil and cause diabetes, or that ‘wellness warriors’ are the true experts and professionals when it comes to diabetes.

While a lot of what I write is spent mocking these fools, there is an underlying seriousness to it all. Who can forget little Aiden Fenton who died after his parents stopped giving him insulin, instead leaving him to be treated by a ‘slap therapist’?

Anyone who is sprouting any treatment that is not based in science when it comes to diabetes or perpetuating anti-vax rubbish is as barbaric as the man who was charged with Aiden’s death.

The whole person

Diabetes happens because of something not working properly with our pancreas. But it affects every single part of us – something that astoundingly still seems to surprise some people.

Considering our mental health and emotional wellbeing is critical when assessing just how diabetes impacts on our every day. For some, diabetes seeps into every single part of us and for others, we keep it at bay and manage around us. For most of us, there is an ebb and flow of just how that works.

And while we’re talking about the whole person, diabetes-related complications may be specific to a particular body part, but those body parts remain connected to the rest of us.

For so long, we get metaphorically chopped up with as only bits of us get attention and focus. But nothing in diabetes is ever in isolation. That’s just not how it works.

And finally, language

The trick this (however-many-trick) pony is most known for is #LangaugeMatters and you know what, I’m happy to wear that. I really am. If I was to stop this blog today (thought about it…1,000 has a nice rounding off feel to it), and never spoke about diabetes ever again (oh, if only), I would not be disappointed if this was what people thought of when they thought of me and this blog.

Language matters. It does and I refuse to, for a moment, believe that it doesn’t. I am certainly not the only person playing in this space and I am so grateful to have a tribe of language matters peers and colleagues can rise above the small details to understand just why this issue does really matter.

___________

Thanks to everyone who has read one or more of these thousand posts. Thanks especially to the people who keep coming back. I can’t promise that there are going to be a thousand more posts. And I can’t promise that I will learn any new tricks other than the ones that I seem to have on repeat at times. These issues remain important to me and perhaps to you too.

* At EASD, my mate Bastian Hauck gave me a head’s up that I was getting close to publishing the 1,000 post on this blog. I’d not have had a clue otherwise. Thanks, Bastian!

Here’s the deal. Changing one word for another that means exactly the same thing is not addressing the whole #LanguageMatters issue. Acknowledging that one word doesn’t work and may not be especially empowering and positive for people with diabetes only to replace it with another that is equally problematic is not really helping.

Case in point: more and more healthcare professionals and researchers have accepted that the word compliant, (and its friends non-compliant and compliance) are out. So, they replace them with adherent, and non-adherent and adherence.

No. Just no. And stop it.

They mean exactly the same thing and do the same thing: rap people with diabetes over the knuckles for not following an often-imposed plan about how we should manage the condition we live with. (‘Should’ is also a dirty word as far as I’m concerned, but we’ll deal with that another day.)

I am frequently asked what words would be better, but I prefer to give an explanation about the reasons these words are problematic. Because I think if people have an understanding of why these words set some of us off, perhaps they may be less likely to simply swap out one tricky word for another.

Let me refer to the Diabetes Australia Language Position Statement for a moment:

‘Use of the terms ‘(non-) compliant’, ‘(non-) adherent’ is particularly problematic. Such terms characterise the individual as cooperative or uncooperative, especially when used as adjectives to describe the person rather than the behaviour. Using these labels can mean opportunities are lost to ask relevant questions, develop collaborative goals, tailor treatment regimens and make referrals that actively support the person to manage his or her diabetes. Attempts to increase ‘compliance’ and ‘adherence’ generally involve persuading the person with diabetes to change his or her behaviour to fit the health professional’s agenda.’

There is a lot of judgement attached to these terms.

I think back to when I was diagnosed with diabetes and the first inkling I had that I was going to struggle to follow directions was when the dietitian I saw the day after diagnosis showed me a rubber mould representing the quantity of mashed potato I should eat in one sitting. I was twenty-four years old and knew just how much food I liked on my plate and that was not it. In fact, it looked more like the quantity I would eat over a week – not one meal.

I mentioned that to the dietitian. I explained how I love food, but I eat until I am full and then stop because I’d learnt that listening to my body was a really important to me. (That sounds all Zen-like, but truthfully, it is just so I don’t get the revolting over-full feeling when I don’t listen to my body’s signals!) Surely there had to be a way that I could still do that even with diabetes along for the ride. Right?

She just looked at me and told me that I had to eat that amount because of my insulin dose. ‘Can I take less insulin then?’ I asked. ‘No. That’s not how it works,’ she replied, without explaining why.

So, I nodded and promised to eat thirteen kilos of potatoes at every meal. And within a week I had worked out how to eat less, dose less and still listen to my body. Oh – and I learnt how to lie to HCPs and tell them what they wanted to hear. And that I never, ever wanted to sit in a room with another dietitian.

Was I being ‘non-compliant’? Well, I certainly wasn’t following what I had been instructed to do. But I was eating what made me feel good and dosing insulin accordingly. Surely that had to count for something? Yet, when I returned to see the dietitian for the follow up appointment that I diligently (compliantly?) kept, she tut-tutted me for not following the eating plan she had given me – an eating plan into which I’d had no input.

This is a recurring theme in diabetes. We hear of people being ‘told off’ for not following treatments, but we are not given the opportunity to help shape those treatments.

Being ‘compliant’ in diabetes suggests that we are doing what we are told. It means that we don’t question, we just willingly follow directions without considering whether or not they work for us. It also suggests there are rules and that if we follow them – if we ‘comply’ with them – we can expect the outcomes to always be the same. Diabetes doesn’t work that way.

I think back over the two decades I’ve lived with diabetes and know that time and time and time again I have been thought of as ‘non-compliant’ simply because I didn’t do what a HCP thought was the best thing for me, instead working my way around and finding what worked. Diabetes isn’t fun, so you bet I have looked for ways to do things that take less effort, less time, less brainpower, less burden. That’s not because I don’t care. It’s because when I find a way that works better for me, I’m more likely to do it.

Every single one of those times that a HCP has thought of me as ‘non-compliant’ was a missed opportunity for us to work together to collaboratively come up with treatment plans, strategies and goals that worked for me.

When we are accused of being ‘non-compliant’ with medication, activity or eating plans, attending appointments, filling in glucose records or anything else that we are expected to do in diabetes, it’s not because we are being wilfully naughty. It is because whatever we have been asked to do is not right for us – we simply cannot do it, or don’t understand why. Sometimes of course we don’t want to do it, but there is usually a reason why we then don’t act.

Compliant (and non-compliant) are dirty words in diabetes. And replacing them with adherent (and non-adherent) doesn’t make it any better because they mean the same thing.

If you are a healthcare professional and use these words when referring to PWD, I suggest that you stop and start again. Think about what you are saying. The person in front of you is not a naughty child, waiting for your approval or rebuke. They do not need to be told that they have failed at meeting (what were probably unrealistic) expectations. They certainly don’t need to feel ashamed and judged by you.

What we need is something quite simple, really. We need to be asked what matters to us and what will work for us. We may need to be asked that a few times. If you are talking about a course of treatment, make sure that we understand that it is just a suggestion and that we can alter it to fit us. Remind us that if we can’t follow it that doesn’t mean we’ve failed. It probably means that together we need to tweak things so that we can follow.

Until the language that we see routinely in diabetes is about supporting, encouraging people with diabetes and positively influencing the broader community discussion about our condition, I will continue to call out any time I hear these words being used. I accept that there is no quick fix. And while I accept that healthcare is incredibly traditional in its communication, I refuse to accept it as a reason to continue to use language that is so damaging. ‘Because we always have’ or ‘Because they’re the words we use that make sense’ is not an excuse to refuse make change for the better.

Postscript

It’s not only in diabetes where we see this sort of language. See this tweet from The Grumpy Pumper about flaws in using the word compliant when it comes to those living with dementia.

Postscript two

Yes, yes, yes I do use the term ‘deliberately non-compliant’ as a badge of honour, wear t-shirts with the phrase boldly blazed across the front of it and carry a phone case with it proudly (in pink) splashed over it. It was used to reflect the opinion of healthcare professionals after I gave a talk about using DIYAPS. 

Back in February, the BMJ published a piece The Grumpy Pumper and I wrote about why language matters when talking about diabetes-related complications. After we submitted the piece, the team at BMJ we were working with asked if we would like to record a podcast to accompany our article. Of course we said yes, because we both like the sound of our own voices. Plus, we figured that we should jump at any opportunity to talk about this subject.

And so, last month while in Europe, we teed up a time and had a fantastic chat with BMJ Patient Editor, Emma Cartwright. Have a listen to us talking about our own experiences of being told about complications, and how the work we’ve been doing has been received in the diabetes community and more broadly.

Thanks so much to the BMJ for having us on this podcast and talking about this important issue. (And thanks to Emma and Duncan for being so patient and accommodating as we wrangled builders who were – it seemed – drilling into the wall right next to where we had organised to do the recording. We may or may not have bribed people to stop drilling for forty minutes so we could get the recording done!)

 

These days, it’s impossible to be at a diabetes conference and not have at least one conversation somewhere about language. Sometimes there are sessions dedicated to the topic on the program, but that wasn’t the case at ATTD a couple of weeks ago – a conference solely devoted to advancements in diabetes technology and treatments.

But despite there not being a session about language, it was still a hot topic. My eagle eye was trained when walking through the exhibition centre for examples where diabetes is misrepresented or the language used stigmatises people living with the condition. And in sessions, I immediately heard terms that suggested that we are misbehaving because the results of treatments aren’t living up to their promise. (A new one: I heard the statement ‘People with diabetes on <therapy> were not performing as expected’ which now makes me think that we are being trained, watched and judged by pageant mums/moms.)

At the Ascensia Diabetes Social Media Summit (more on that another day), there was a discussion about language and diabetes-related complications. This event was a follow on from the one we had at the Australia Diabetes Social Media Summit, and took the initial conversations and expanded it with a new group of PWDs.

Once again, as the discussion unfolded, it was clear to see that the PWD in the room all had experiences where the language they were faced with had impacted negatively and positively. One person commented that early on in their diagnosis, a health professional had addressed diabetes-related complications by saying ‘If you are diagnosed with a diabetes-related complication it will not have been your fault.’ What an empowering way to begin the discussion about complications, care and risk reduction!

I’ve been talking about language for a number of years. Some may call me a one trick pony and, honestly, that’s fine. My appetite for the subject matter has not diminished one bit despite more than a decade of speaking and writing about why language is so important and holds such power.

Language is not a one dimensional issue. Additionally it does not necessarily have a ‘right way’ to do it – especially when looking at it from the perspective of the person living with diabetes. The work I have been involved in has never been about policing the words used by people with diabetes, but rather how words used by others affect us.

It’s why the piece Grumps and I wrote for BMJ  was important – it targeted healthcare professionals, explaining to them why the words and language used around diabetes-related complications needs to not make us feel hopeless. Because that is what can happen and when we feel that way, it is all too easy for diabetes to seem just too big and too hard and too much.

I have frequently written about how diabetes can become so overwhelming, that it can leave us unable to attend to even the most basic and mundane of diabetes management tasks. I myself have been paralysed by the detail and demands of this health condition. I understand that there are times when a conversation about language is not possible, because, quite frankly, there is a lot more to deal with. I know that there have been moments when even though I can hear judgement and blame in the words being directed at me, all I want to do is find a way out of what feels like a hole. I’ve heard others say that they have felt harshly treated by HCPs, but simply didn’t have the capacity to try to deal with that because there were other things higher up on the list.

And I am sure that there are people who simply wouldn’t even know where to begin if the words and language being directed at them were disempowering and negative.

But that is exactly why language matters. It is for the people in those situations – for me when I was in that situation – that we need to get the way we communicate about diabetes right.

I am so sick of people trying to delegitimise the language discussion, or, even worse, reduce it to something that is insignificant. It frustrates me when the discussion returns again and again and again to the diabetic/PWD debate. As I said at the Ascenisa event at ATTD when we were discussing the annoying way some try to redirect meaningful discussion back to this single issue: ‘You can call me Blossom for all I care, language is about far more than this.’

And I think that while it is critical that we acknowledge that sometimes the language issue isn’t going to be a priority for some (by choice or otherwise), it seems unfair – and a little counter-intuitive – to diminish its importance, or criticise those of us trying to keep it on the agenda and actually do something about it.

(Click for original tweet)

DISLCOSURE

I attended the ATTD conference in Berlin. My (economy) airfare and part of my accommodation was covered by DOCLab (I attended an advisory group meeting for DOCLab), and other nights’ accommodation was covered by Roche Global (I attended the Roche Blogger MeetUp). While my travel and accommodation costs have been covered, my words remain all my own and I have not been asked by DOCLab or Roche Global to write about my attendance at their events or any other aspect of the conference. 

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