Diabetogenic

Best kept secret in diabetes

April 16, 2019 in Communication, Diabetes, Healthcare team, Language, Peer support, Real life, Uncategorized | 5 comments

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.

Pancreas performance review (with thanks to Effin’ Birds)

April 15, 2019 in Diabetes, Real life | 3 comments

Dear Pancreas

For the last twenty-one years, part of you has been living rent free in my body doing…well…doing bloody nothing.

If I could performance manage you out of there, I would. Alas, I cannot. But here is the performance review I would give and the things I would like to say (with illustrations from Effin’ Birds).

As it stands, it’s been a while since the whole functioning beta cell thing happened.

In fact:

And…

Just an idea, but…

I’d really like to know…

And was wondering if you could perhaps…

But…if the last twenty-one years is anything to go by, I’m guessing that not much is going to change any time soon.

So, we’ll just keep going with this?

Yep?

Here’s the thing: the last twenty-one years have been pretty rough at times. But I’ve managed. I have no idea what I am doing most of the time, and spend a lot of time with a confused look on my face, or saying…

But that’s okay. Because along with the understanding and acceptance that I may never, ever truly be good at diabetes, it turns out that I am managing.

So, dear pancreas. As you were.

And on I’ll go. As I have been. Just like this…

Effin’ Birds is the sweary joy you need in your life. After I found them last year, I wrote this piece because, I found that there is a picture for pretty much every diabetes moment imaginable.

Follow them on Insta here and Twitter here. (Obviously, this is not for people who are offended by obscene language. I am not one of those people. Neither is my kid who takes great delight in bringing out our set of Effin’ Birds playing cards whenever she has friends over. I apologise unreservedly to those friends’ parents.)

Running through my veins

April 12, 2019 in Diabetes, Real life | 2 comments

Look! A t-shirt that explains what I am made up of:

Insulin and coffee: that pretty much sums it up.

Some days it makes sense to wear diabetes on my sleeve (and chest…). You can get your own by clicking on the image and going to the The Diabetic Survivor‘s e-shop. Lots of fun stuff to check out, including tees, bags, phone cases and more. I’m a bit taken by the ‘Dead Pancreas Gang’ merch.

I bought this shirt myself because it’s cute and I like to support folks in the diabetes community.

First step towards a diabetes PA

April 10, 2019 in Awareness, Complications, Diabetes | 1 comment

I regularly say that I wish I had an assistant to take care of all the diabetes admin. I’d like to be able to hand over all the scheduling, paperwork and the general keeping track if it all that takes time, brain power and forces us to find room that those not living with diabetes can dedicate to making sure they remember if there is milk in the fridge or when the new season of The Good Place starts.

It would be a thankless job, and I doubt that anyone would be interested in doing it, but I can dream.

A couple of weeks ago, Diabetes Australia officially launched KeepSight, the first ever national eye screening program for people living with diabetes. It’s actually a super easy concept: PWD register to be part of KeepSight and then receive reminders when it is time to have an eye check. No more needing to remember the last time you had a check-up.

This is similar to the cervical screen program that has been around for a number of years now. I have relied on reminders from that program to alert me when it is time to make an appointment for a screening check. KeepSight will help us keep track of our eye checks.

I could give stats about the number of people who are missing out on regular eye checks, and even more stats about rates of diabetes-related eye complications. But I won’t. Because that is not what is getting me excited about this program.

I’m excited because this is one of those simple ideas that goes towards making our lives with diabetes easier. And, quite frankly, there’s not enough of that happening!

Click on the link below; it takes literally two minutes to register.

Now, if we could just find a way for insulin scripts to never run out, diabetes supplies to be endlessly replenished when running low and all our other appointments sorted, we’d be halfway to making this condition just a tiny but easier to manage.

Disclosure

I work for Diabetes Australia, but I am not writing about this because I have been asked to. I am doing it because I genuinely think this is a program that goes towards helping those of us living with diabetes and I will always share anything that does that.

But you do need to be aware of who pays my salary each week and consider my bias when I share things by my employer. You have a right to know that, which is why I will always make sure that it’s clear – each and every time I write about anything in which I am involved. Transparency is important.

First 74 minutes

April 9, 2019 in Diabetes, Real life | 3 comments

7am alarm.

Alarm off.

Out of bed.

Check pump site – looks a bit red so rip it out.

Into the shower.

Remove glue residue from old pump site.

Dry off.

Moisturiser.

Refill pump.

New cannula in.

Prime pump.

Apple watch on.

Check Loop app is working on watch.

Get dressed.

Tuck pump away in my bra.

Tuck RileyLink away in bra, too.

Dexcom app alarm sounds.

Calibrate CGM.

Make up on.

Run fingers through hair – that will do.

Check handbag for low supplies.

Loop low battery notification.

Get battery and coin out of spares bag.

Change battery in pump.

Double check supplies in spares bag.

Add another battery.

Throw Riley Link charging cable in handbag.

Say good bye to family.

And dogs.

Red lipstick.

Dexcom sensor expiring warning.

Clear alarm – restart will be later in the day.

Walk out door.

Get in car.

Check Loop on watch. Green and steady.

Drive to work.

Sing loudly in car.

Get to work.

Open laptop.

Grab coffee cup.

Bolus for coffee.

Walk to café.

8.14am Coffee.

Diabetes like you mean it.

One thousand

April 8, 2019 in Awareness, Communication, Diabetes, DOC, Engagement, Food, Health, Language, Mental health, Peer support, Real life, Wellbeing | 5 comments

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!

Do we need psychologists in diabetes care?

April 5, 2019 in Diabetes, Healthcare team, Mental health | 5 comments

Recently, I was tagged in a tweet that asked for my thoughts on a discussion that was already in progress, and had started with this tweet from diabetes consultant Pratik Choudhary:

(Click for original tweet and to read discussion)

It’s a long thread (that seems to still be going), but it is worth a read to see some different perspectives and thoughts on the role of psychologists as part of the diabetes multi-disciplinary team.

I think that Pratik’s original tweet is right in that diabetes clinicians have a role to play in acknowledging diabetes-related distress and working with PWD by asking the right questions.

But just asking isn’t enough and rarely actually gets to the root of it all. Because unless we are asked and can understand why we are behaving a certain way, we don’t know how to stop it. Why do we feel guilty? Why do we feel that we need to be perfect in the first place? Why do we base so much of our own worth on numbers (TIR or A1c)?

But in the real world, I don’t think these questions are being asked, and there are myriad reasons that’s the case. Some clinicians wouldn’t have a clue what or how to ask. And then if they did, they’d struggle to know what to do with the answers. Only recently, I heard of a diabetes educator say ‘You just have to do it’ to a PWD who had opened up and said they were really not checking their glucose levels because they felt ‘over’ diabetes and simply unable to manage its significant daily tasks.

I nodded in recognition when I heard this story because that was me for the first three and a half years of living with diabetes.

Also, sometimes PWD feel too ashamed and guilty to admit the distress they’re experiencing to their HCP, instead promising to do better and check more and respond accordingly. But do nothing of the sort.

That was me, too.

In the limited time we get with our diabetes HCPs, we seem to have a focus on numbers and basal rates and tweaking X and Y to make Z better. We are in diabetes mode because we know those minutes are precious and diabetes is what we are meant to be focusing on – even though diabetes may be so far down our list of concerns we sometimes (try to) forget we even have it.

Yeah. That has been me too.

Even though I have an endocrinologist who asks the right questions, doesn’t fill those silences where I am looking for the right words, is encouraging and supportive and never judgemental, and understands that diabetes-related distress can be paralysing, she was not who I needed to get through those times. I love that she knew that.

She also knew that no matter how many SMART goals we set together, and even if I said that I would be able to do them because I could see they were achievable and completely not unrealistic, until I had a mental health professional work with me there was no way I was going to do them.

One of the first things she did when I started seeing her seventeen and a half years ago was refer me to a psychologist. The guilt that I was feeling about the imperfect numbers – or the lack of imperfect numbers because I was barely checking them, was steeped in a complex and convoluted mess. I needed a mental health professional whose expertise was to help guide me through it all and show me how to get things sorted.

THAT was what I needed at that point in my diabetes life…and numerous other times since then too.

For me, there has always a lot to the cause behind my diabetes-related distress, and speaking with many of my peers, they would say the same thing. I didn’t understand that it was okay for me to grieve my life before diabetes. I could remember it well – the days of not needing to think diabetes, breathe diabetes, sleep diabetes. My life was different post-diagnosis, but the recurring messages I’d heard was that diabetes wouldn’t stop me and I should just get on with life.

Well, I have done that. But that doesn’t mean I didn’t need time to mourn the days where I didn’t do all that. Having someone help me where diabetes now fit in my life was essential to clearing a path for me to actually make diabetes happen. And for the record – I’ve needed counsel with this several times because diabetes’ place does change around depending on other things in my life.

So where does a psychologist fit in the diabetes health professional equation?

For me, it must be as part of any multidisciplinary team.

I’m not sure that the day I was diagnosed would have been the right time for me to have an appointment with a psychologist (but let’s be honest, it would have been no less helpful that the dietitian and her rubber food moulds), but I certainly do wish that I’d know that having someone to talk about my mental health was a sensible thing for when I needed it, and given clear directions about how to go about getting an appointment. I was told about the eye specialists and podiatrists that would be part of my future team, but no one thought to mention a mental health professional.

It shouldn’t have taken almost four years – four very difficult years in a lot of ways.

Over the years, seeing a psychologist has helped me with my diabetes management enormously. Those times when diabetes has terrified me to the point of paralysis and inactivity, the times where I wanted to blame diabetes for other things going on (because it is there and I generally don’t like it so it’s convenient to point my finger at it!), the times when the uncertainty of diabetes and the fear of what lies ahead, or the times when life overall has felt just too big and scary and diabetes just doesn’t get a look in … I have benefited from having a mental health professional to work with. In fact, I doubt that I would see diabetes is the way I do now without that support.

There is so much more to managing diabetes than simply doing diabetes. And there is more to diabetes distress than just acknowledging that it is there. Having diabetes specialists who understand about distress is valuable. But I really do think that understanding it ourselves, being able to identify warning signs, and developing sustainable strategies to deal with it any time it comes back needs the expertise of a psychologist.

Interweb jumble #35 – the vaccine edit

April 4, 2019 in Diabetes, Health, Real life | 1 comment

It’s that time of year in Australia. The weather is cooling down, leaves are turning, daylight saving ends over the weekend, and we are reminded that soon it will be time for our annual flu-vax.

This has coincided with a significant number of different pieces in the media about vaccines. Some of them are well written and well informed pieces focusing on the science behind why vaccines work. Some of them are not. (Cheat sheet: science-based pro-vaxx stories good / crazy no-science anti-vax stories bad.)

There often seems to be a groundswell after some celebrity chef, wellness blogger, person famous for being famous or, (as we’ve seen recently) WAG comes out and explains why vaccines are the devil and we should all rely on ionised water, sunshine and pixies rather than evidence and science.

So, today, I thought I’d share some of the things I’ve seen recently which support the vaccination message.

No platform for anti-vaxxers

I’m going to start with this. Meet Zubin Damania, MD – or as he’s known on YouTube, ZDoggMD. I know – I cringed, too. But he speaks sense and the first time I watched this video, I was nodding in agreement. ZDogg (cringe again) has decided that he is not going to in any way entertain any discussions with anti-vaxxers anymore. He’s not going to enter debate, he’s not going to try to show them the science or the facts and debate them. Instead, he’s going not allowing them a platform on any discussion he is involved in. Where he has previously permitted anti-vaxxers to share their views, he won’t be doing that anymore.

I like this approach. Previously when I have written about this topic, people disagree and put forward their ridiculous hippy-dippy delusions about the dangers behind vaccines. Not any more. I will be deleting any anti-vaxx comments on this blog from now on. This is a pro-vaccine place only. I believe the science. So science we shall speak.

What’s it going to take to stop anti-vaxxers?

According to this piece from the New York Times there is no stopping the anti-vaxx brigade because they are not willing to listen. Instead, they believe in conspiracy theories and their own ‘alternative’ facts with no foundation in science.

When a doctor advises against childhood vaccines…

This piece from Melbourne writer, Van Badham, is heartbreaking. Her mother had been advised by their family GP to not give Van the measles vaccine. Van caught measles at 17 and almost died.

Can I just add here, if your doctor is sympathetic to anti-vaxx views, find a new doctor (or nurse or any other HCP for that matter).

Measles in Europe

A recent piece in BMJ explains how measles cases have tripled from 2017 to 2018. That’s one year. More than 80,000 people in 47 European countries had measles in 2018.

A fall in type 1 diabetes and the rotavirus vaccine

A new study by Melbourne Researchers says that the drop in the number of children aged 0 – 4 years diagnosed with type 1 diabetes could be associated with the introduction of the rotavirus vaccine of Aussie infants. It’s the first time we’ve seen a fall in diagnosis rates since the 1980s.

Record-breaking measles cases in NSW (this is not something to be proud of)

Just this week, this article appeared in the Sydney Morning Herald telling of two babies contracting measles. They were too young to be vaccinated. There have been 29 cases of measles in Sydney since xmas and NSW is looking to have the highest rates of measles in five years. Measles – a vaccine-preventable disease.

Show this article next time you hear an anti-vaxxer selfishly claim their children are ‘perfectly healthy & don’t need to be poisoned by toxic vaccines’.

Ten year study shows that MMR vaccinated children LESS likely to develop autism

From Denmark: a ten year study which examined data on over 650,000 children showed that not only is there no link between MMR and autism, but children who were vaccinated were seven per cent less likely to be diagnosed with autism than children who were not vaccinated.

You think flu is not serious?

Dr Jen Gunter wrote this great piece where she shares her own experience of ‘flu as well as those from others who commented on twitter. The ‘flu is not a cold. It is not a little inconvenience. It can and does kill.

Smart kids; foolish parents

But perhaps my favourite story about vaccines lately is this one which tells of rebellious children defying their anti-vaxx parents by getting vaccinated. Let’s just remember that most of those parents preventing their children from being vaccinated probably didn’t have foolish parents and are, in fact, vaccinated themselves. But they think nothing of exposing their children to vaccine-preventable diseases, and putting others in the community at risk.

These teens are amazing and good on them for believing the science and fixing what their parents didn’t. Maybe there is hope…

Evil Mr Vaccine…

Diabetes and the flu-vaccine. It’s time.

I hate that almost every week scientists have to come out and debunk the latest claims made by some completely hopeless anti-vaxxer: some footballer’s wife is running workshops highlighting the (made up) dangers of vaccines and is telling anyone and everyone who’ll listen that she will not be vaccinating her unborn child; a former swimmer says that people should weigh up both sides and make up their own mind; a celebrity chef endorses anti-vaxx campaigners, (while at the same time advises against using sunscreen).

And every time something like this happens, scientists have to stop doing their important science work, and go on breakfast radio and TV to explain patiently why these comments from these village idiots are rubbish, and then defend their own work and the work of their colleagues.

There are very few people in our community who for medical reasons cannot be vaccinated, and the rest of us need to be to protect them, and other vulnerable populations. Herd immunity works. And so do vaccines. Just vaccinate. There is no debate.

The wife’s fault (obviously)

April 3, 2019 in Diabetes, Family, Peer support, Real life | 4 comments

I’ve been working for diabetes organisations now for coming up to eighteen years and unsurprisingly have accumulated some truly fascinating things along the way.

Including a photocopy of a 1972 edition of ‘Victory’, the ‘Official publication of the Victorian Diabetic Association’ (now known as Diabetes Victoria).

I was flicking through it the other day and came across this gem:

Apparently, ‘the wife’ is the reason her husband either becomes overanxious about his diabetes or instead, takes charge and continues his existence as a captain of industry, putting diabetes in its rightful place. That’s right, it is ‘the wife’s’ fault her husband becomes a blithering mess unable to look after himself and incapable of doing more than curling up in his favourite chair, wearing his favourite slippers and cardigan while being (over) parented by his partner. This must be because 1972 wives have some sort of enchantress powers that conquer any man’s autonomy or decision-making abilities.

1972 wives sound magical and awesome. How do I become one?

All joking aside, if we remove all gender references in this piece and have it just about the way in which others treat us and how that influences our view about our diabetes, there is, perhaps, an element of truth to the thinking behind it all.

What I need (and am fortunate to have) is a group people around me to support me as I make decisions and diabetes the way I want and need. They back me by being there with a shoulder to lean on or an ear to listen if I ask, but never take over or try to ‘fix’ things.

This sort of support helps us know that we can do this. I may never think of diabetes as ‘an amusing inconvenience’ (there is little to be amused about a lazy pancreas), but I will never see myself as neurotic or incapable.

I certainly don’t want a 1972 wife (or a 2019 partner, parent, sibling, friend, colleague, healthcare professional, associate or anyone else) dictating how I feel about the health condition that lives in me. I do want them to laugh with me at this ridiculousness, though. And promise me that they will continue to keep being exactly the way they are right now! (And maybe joining me when I tell off anyone who suggests – even for a second – that I inject in the lav adjoining the boardroom.)

Meaning the same thing

April 2, 2019 in Communication, Language | 2 comments

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.