When people have asked me how I am feeling throughout the COVID-19 pandemic, they will usually receive a reply that varies from ‘All good’, to ‘Pushing through’, to ‘It’s been a tough week’, and everything in between.

What they won’t hear is how I have been feeling alongside these things. I have felt expendable.

It started early on with the first reports of the new virus that we knew nothing about. ‘It only affects people who are older and those who already have a health condition.’

In one of the first posts I wrote about how I was feeling as we entered this new world, I wrote these words ‘…the other day, I found that I was fighting back tears as, yet again, some politician somewhere promised that people who were diagnosed with the virus would most likely be okay – as long as they were not old or chronically ill.’

That was on 13 March. It’s now 11 September. For the last six months, I have continued to fight back tears and deal with lumps in my throat because one of the few constants through all of this is the lack of care and compassion directed at people who are older and those of us living with health conditions It’s a rather laissez-faire attitude: let’s not worry because we are all going to die anyway.

Being made to feel that I don’t matter is grinding. The accompanying stories from places with over-stressed medical departments, which show the people who this was ‘only’ meant to affect are being denied treatment because care and hospital beds are being prioritised for younger, ‘healthier’ people, are heartbreaking (and I’m sure impossible for the HCPs who have to make these decisions).

Add to that the bullshit reporting, manipulating data (and the truth) to suggests that many people who have had their deaths attributed to COVID-19 didn’t actually die FROM the virus, but rather WITH it, as if that makes it all okay and we are all just minutes away from dropping dead anyway, so who cares. It’s fun watching a discussion about how, if I was to get COVID and die, it would be the fault of the condition that I have worked so fucking hard to manage so that I can be healthy and contribute to the world around me, rendering that effort a waste of time.

It is a lot. It feels heavy. It feels that I don’t matter. But I do, don’t I? My friends with diabetes do too, don’t they? My parents and others’ parents and grandparents, and friends and family and colleagues who are older matter, don’t they?

Feeling expendable is a terrible way to feel, but it has been nestled in a corner of me for over six months now. That’s a really long time to feel pretty crappy and I honestly think it’s time to be better about the underlying messages when talking about COVID-19. I really want to stop feeling this way, so please, think about what you are saying when you mention people like me.

 

 

For more information (all Australian sites):

http://www.ruok.org.au

http://www.beyondblue.org.au

http://www.lifeline.org.au

(Here it is in pink!)

Diabetes conferences and scientific meetings in 2020 have looked very different than in previous years. It looked as though we were off to a flying start with a successful ATTD in Spain back in February. But not long after all the attendees returned to their corners of the globe, the world turned upside down and decided that, along with everything else, in-person meetings were done.

Major professional conferences such as those run by ADA, DUK, EASD, ISPAD, ADS & ADEA and IDF have all either happened, or will be happening, virtually, with a Zoom (or other) platform being where we meet, rather than a massive conference centre in a major city.

As ever, I search for a silver lining and if there is one it is this: the pivot to virtual conferences means that some of the main barriers in the way preventing PWD attending diabetes conferences are somewhat reduced. With travel, accommodation and a lot of the other expenses out of the way, it may be easier for advocates who would like to attend to find their way in. Let’s look at that as the disruption we needed to have to get PWD flocking to meetings in droves.

There is still the matter of registration passes, and we know that is not always the easiest thing to overcome. The registration fee is significant, and some conferences only allow HCPs and researchers in. Usually, press passes provide a way to get passed security, but they require letters of assignment (sometimes from diabetes organisations who ask PWD to act as ‘on the ground’ reporters), or other criteria be met. And, of course, there are invitations to attend satellite events extended from device and drug companies to some advocates. While there is often criticism at these methods, they have meant that there are PWD at conferences, many of whom provide information back to the community.

At ATTD, there was a new way in. Advocacy group #dedoc° launched a new program, #dedoc° voices, which you can read all about here. For the pilot of the program in Madrid, the diabetes advocates whose applications were successful had access to all parts of the meeting.

#dedoc° voices is happening again for EASD (coming up next month), and it’s not too late to apply. And as an added bonus, successful applicants will also receive registration to the ISPAD conference in October. ISPAD is the International Society for Pediatric and Adolescent Diabetes, so if you are a parent of a kid with diabetes involved in advocacy and peer support, you may be super keen to attend this one.

To apply, go here. #dedoc° voices is open to PWD now, so if you have always wanted to attend a major diabetes conference, there is nothing stopping you from applying, right now. Any one from anywhere around the world can apply – the only consideration is how you’ll manage time zone horrors if you don’t live in the same zone as the conference. (But please don’t come crying to me about that – I’ve spent the last six months settling in for hour long meetings hosted out of Europe of the US which begin long after sunset and involve perky people just waking up while I yawn and struggle not to fall asleep in my Zoom square!)

What are you waiting for? Apply now and come be a part of one of the biggest diabetes meetings in the world. I promise there will be lots of other PWD there for you to (virtually) meet up, and share ideas with. Come say hi!

Disclosure

I am an advisor to the #dedoc° voices program. I do not receive any payment for this role. 

 

This was one of the first things I saw when I opened my email this morning: the lead article in the latest edition of The Limbic – Subsidised CGM has not improved outcomes in Australian children with T1D’.

I’m relying on the The Limbic’s commentary as the study is not open access (I have requested a copy from one of the authors), and according to the report, the focus of the study was improvements in A1C and reductions in severe hypoglycaemia.

It will come as no surprise to anyone who has read anything I have written about technology or heard me give one of my many, many talks on user experience that I found this report problematic. Screaming that a well-funded and hard-fought for program, providing much needed diabetes technology to children (and adults) is ‘underwhelming’ does not sit well with me at all, especially when the main way the program’s success has been evaluated is a highly flawed clinical measurement.

When I look at the benefits I list when it comes to using any sort of diabetes tech – or other diabetes management, whether that be a drug, an education program or even peer support – changes to my A1C is far down on the list. I understand that for some people, this is certainly a measure of success, but it is not even close to one of the first things I would consider.

My history of using diabetes technology is long and elaborate. Perhaps one of the best examples of just why A1C gives a very incomplete picture of how I measure success is my initial foray into using an insulin pump. It was almost 20 years ago, and I was only three years into living with diabetes. That story is one that could be used as an example of ‘How NOT to do pump therapy’.

I was educated (and I use that term very loosely) by a rep from the pump company. She talked at me for three hours, pressed buttons, loaded some numbers into the device and then stepped out so a dietitian could teach me all I needed to know about carb counting. She was in the room for forty-five minutes. (For context, this was my introduction to carb counting, because my first dietitian encounters were only about low GI, with a general direction of ‘Eat as much as you want of it as long as it is low GI’).

I was released from the hospital with this new device strapped to me, step by step instructions for how to do a cannula change in three days’ time, and absolutely no idea what I was doing.

But here’s what happened: I could sleep in again. I didn’t need to eat unless I really wanted to; eating by the clock became a thing of the past! I could eat brunch out with friends again, without having already had breakfast at 7am. I ate more of the foods I wanted to and stopped stressing out each time I sat down for a meal. I felt more relaxed. My life felt just a little bit more mine, rather than dictated to my a most unwelcome health condition. And sleep! Did I mention sleeping in?

My A1C was the highest it ever was. By all clinical measures, I was absolutely messing this up. But by my measures – which were based on how I was feeling, how emotionally robust I was, how burnt out I felt, how late I could sleep in on the weekend (I see a theme) – I was ticking every single box.

My endocrinologist told me that I was wasting my money (and his time) being on a pump, and nothing I could do to explain that for the first time in three years I felt like myself. Sure, I knew that I had work to do on my A1C, but I finally felt emotionally resilient enough to do that. He just shook his head and sent me on my way…and was promptly sacked.

(Luckily for me, the story ends well because about eight months later, I came across a woman called Cheryl Steele. Suddenly I could use a pump properly. My A1C came down; my quality of life remained elevated.)

My story is not uncommon. I have spoken with dozens and dozens of people who have benefited from the CGM initiate and overwhelmingly, the stories I hear are people who are grateful for the tech for what it has offered them. Interestingly, we rarely talk about those measures that HCPs and researchers seem to think are the best way to gauge the success of any sort of intervention. They talk about those same things I mentioned earlier. When the CGM initiative was first launched, parents of kids with diabetes told me they had slept for more than three hours at a time at night for the first time in years. They told me how they stopped fearing hypoglycaemia so much, because they were being alerted if their kids glucose levels were trending downwards. They told me that their kids were having sleepovers and heading off to school camp for the first time.

A1C? Maybe we would mention that somewhere down the track, but that wasn’t what got us the most excited. That wasn’t the bit we spoke about when we uttered the words ‘life changing’.

Obviously, research is important. Data is essential. It was data that provided the strong case for Diabetes Australia, JDRF, ADS, ADEA and APEG to advocate for CGM funding as part of the NDSS. But the case that was put forward also included research that looked at QoL, because the organisations know that this matters.

Research that focuses on A1C is always going to be problematic in a health condition that will never only be about that number. It’s problematic for a number of reasons – not just because it gets my shackles up before I’ve had my morning coffee. We know the pot of money that goes to supporting and funding initiatives, such as the one in this study, is very limited. Funding authorities don’t have the nuanced understanding of all the different interventions that need funding, so if a study like this comes across their desk, it could raise red flags.

I am not for a moment saying that this sort of research should not be conducted or that negative results should be buried. What I am saying is that any results need to be flagged as only ever presenting part of the issue as a whole.

I am looking forward to reading the whole study – and truly, I’m hoping that this blustering post is all a waste of time because somewhere in there, I will get to see that the researchers spent a fair bit of effort evaluation QoL as well. I’m hoping that the trumpeting heading from The Limbic is nothing more than their typical sensationalism.

My fear, however, is that there won’t be more, and that once again, PWD will have been reduced to nothing more than a flawed metric that shows only one corner of the picture of our lives with diabetes.

I’ll finish with one final thought. I advocate for PWD’s involvement in every single step of diabetes research (not just as participants of studies), and one of the reasons I do that is because when we are at the table when studies are being first mapped out, we are given the chance to remind those conducting the work that the answers they are seeking are coming from people. Real people who will always be far more than their diabetes. And somehow, that needs to be reflected in the study they are doing. It can be done. Unfortunately, this seems to have missed the mark.

Today, Australian actress, comedian and activist, Magda Szubanski wrote a twitter thread that was eloquent, to the point and damning. And heartbreaking. Magda is part of a Victorian Government ad campaign encouraging Victorians to stay home during our COVID-19 second wave. After donating her time to make the ad (the fee she received was donated to the Red Cross Beirut fund which she only pointed out after people were saying she was financially benefitting from pandemic) she has been criticised by people, and that criticism has been nasty, personal and insulting.

Today, her twitter commentary was fair and squarely aimed at Pete Evans who apparently is a health professional, epidemiologist, virologist, public health expert television chef. Evans, in full flight indignation took to his FB page yesterday to exclaim how horrified – HORRIFIED – he is at the TVCs, calling them offensive and disgraceful.

Interestingly, he has not called any of the people making comments on his FB post offensive and disgraceful, despite the way they have been fat shaming Magda, calling her unhealthy and making personal attacks. There was more than one reference to the movie ‘Babe’.

Pete Evans knew what he was doing. He didn’t specifically mention Magda’s weight – in fact he didn’t mention Magda by name. But he did use an image of her from the advertisement in his post. That was enough to summon his flying monkeys to glide in and do his dirty work. Which they sycophantically did, tripping over themselves to be the loudest and most eager to do Evans’ bidding. Anyone who so much as suggested that perhaps the comments about Magda were inappropriate was told to pull their head in.

In true gaslighting form, Pete Evans has claimed that he didn’t in fact fat shame Magda. He followed up his earlier post with another, where he has centred himself as the victim – a martyr if you will – because he is being called out for his prick-ish behaviour.

It is disappointing to see that communities that are built around shonky foundations of wellbeing become nothing more than breeding grounds for hate, shaming and discrimination. Leaders of the groups decide who the latest target will be and then unleash the hounds to do the nastiness. I’ve seen it, had it happen to me first hand, and pushed back on it at every single point I’ve been able to.

This behaviour isn’t new.

I don’t want to give Pete Evans more air. But I will because people like him are dangerous, and his behaviour is nothing short of poisonous. I’m not specifically referring to alternative health lunatics – although they are a particular brand of toxic. Unfortunately, we see it all too frequently these days. These are the methods employed by LCHF bullies. We see it in the diabetes world. It happens when people style themselves as (super)heroes, stopping at nothing to advance their cause, and anyone who dares disagree is shut down.

Today, we saw real ugliness on show from Evans and his supporters. We saw how social media can – and frequently is – used to form a pack mob that unfairly shames and targets people. But we also saw grace from Magda. Which, I hope, is what will be the lasting memory of any scenario like this one.

At the best of times, I’ll celebrate any kind of anniversary, but it seemed even more important to acknowledge my ‘loopiversary’ this year in what can really only be termed as the most fucked of times. Last week, I clicked over three years of looping, a decision that remains the smartest and most sensible I have ever made when it comes to my own diabetes management.

In reflecting just how Loop has affected my diabetes over the last three years, I’ve learnt a few things and here are some of them:

  • The words I wrote in this post not long after I’d started looping are still true today: ‘…this technology has revolutionised every aspect of my diabetes, from the way I sleep, eat and live. I finish [the year] far less burdened by diabetes than I was at the beginning of the year.’
  • The #WeAreNotWaiting community is but one part of the DOC, but it has provided the way forward for a lot of PWD to be able to manage their diabetes in ways we never thought possible.
  • Even before I began to Loop, the kindness and generosity of people in that community was clear. I took this photo of Dana and Melissa, two women I am now lucky to count amongst my dearest friends, at an event at ADA, just after they had given me a morale boosting pep talk, promising that not only could I build loop for myself, but they would be there to answer any questions I may have. I bet they’re sorry they made that offer!

  • Loop’s benefits are far, far beyond just diabetes. Sure, my diabetes is easier to manage, and any clinical measurement will show how much ‘better’ I am doing , but the fact that diabetes intrudes so much less in my life is, for me, the real advantage of using it.
  • That, and sleep!
  • I get ridiculously excited when other people make the leap to looping! I have watched friends’ loops turn green for the very first time and have wanted to cry with joy because only now will they understand what I’ve been ranting about. And experience the same benefits I keep bleating on about.

  • It’s not for everyone. (But then, no one said it was.)
  • You get out what you put in. The more effort and time and analysis you put into any aspect of diabetes will yield results. But with Loop, even minimal effort (I call the way I do loop ‘Loop lite’) means far better diabetes management than I could ever achieve without it.
  • It took an out of the box solution to do, and excel at, what every piece of commercial diabetes tech promises to do on the box – and almost always falls short.
  • It’s amazing how quickly I adapted to walking around all the time with another but of diabetes tech. My trusty pink RL has just been added to the phone/pump/keys/ wallet (and, of course, mask) checklist that runs through my head before I leave the house.
  • Travelling with an external pancreas (even one with extra bits) is no big deal.

  • I was by no means an early adopter of DIY tech, but I was way ahead pretty much any HCPs (except, of course, those living with diabetes). The first talk I gave about Loop still scars me. But it is pleasing to see that HCPs are becoming much more aware and accepting of the tech, and willing to support PWD who make the choice to use it.
  • The lack of understanding about just what this tech does is astonishing. I surprised to still see people claiming that it is dangerous because users are ‘hacking’ devices. Language matters and you bet that this sort of terminology makes us sound like cowboys rather than having been thoughtful and considered before going down the DIY path.
  • The lengths detractors (usually HCPs and industry) will go to when trying to discredit DIYAPS shouldn’t, but does, surprise me. The repeated claims that it is not safe and that people using the tech (for themselves or their kids) are being reckless still get my shackles up.
  • Perhaps worst of all are those that claim to be on the side of those using tech, but under the guise of playing ‘devil’s advocate’ do more damage than those who outwardly refuse to support the use of the technology.
  • The irony of being considered deliberately non-compliant when my diabetes is the most compliant it ever has been hurts my pea-sized brain. regularly.
  • There is data out there showing the benefits and safety of looping. Hours and hours and hours of it.
  • My privilege is on show each and every single time I look at the Loop app on my phone. I am aware every day that the benefits of this sort of technology are not available to most people and that is simply not good enough.
  • Despite all the positives, diabetes is still there. And that means that diabetes burnout is still real. But now, I feel guilty when feeling burnt out because honestly, what do I have to complain about?

But perhaps the most startling thing I learnt on this: The most variable – and dangerous – aspect of my diabetes management has always been … me! Loop takes away a lot of what I need to do – and a lot of the mistakes I could, and frequently did, make. Loop for me is safer and so, so much smarter and better at diabetes than I could ever hope to be. I suspect that as better commercial hybrid closed loop systems come onto the market, those who have been wary to try a DIY solution will understand why some people chose to not wait.

And finally, perfect numbers are never going to happen with diabetes. But that’s not the goal, really is it? For me, it’s about diabetes demanding and being given as little physical and emotional time and space in my life. With Loop, sure numbers are better – but not perfect – and I do a lot less to make them that way. It took a system that did more for me, keeps me in range for most of my day, and has reduced the daily impact of diabetes in my life to truly understand that numbers don’t matter.

Spend enough time trawling through social media posts with a #DOC somewhere in the hashtag, and it is inevitable that you will see photos of people’s CGM graphs. Often, it’s PWD getting excited at their flat line graphs because they have managed to stay within range for a certain period of time. Or perhaps it’s to show shock and utter disbelief at loop systems doing all the work. It can be because we won’t to show how we have managed to nail the timing and amount of a bolus, and that usually-difficult to manage food nemesis (hello, rice!), completely avoiding a spike. Or, it could be just because we feel like sharing.

I don’t share my graphs a heap these days, but have in the past. It’s a personal decision as to whether we want to share their data online, and if you do, knock yourself out. Your data, your rules! I understand why some feel that it can be considered not especially helpful for others, setting us up to feel we are failing if we compare. But the conversation sharing can generate is really useful for a lot of people.

Every now and then, a non-PWD will share their libre or CGM trace to show that even those with a perfectly working pancreases are subject to glucose fluctuations. This is done with the intention of support and encouragement and to show that flat lines really are unrealistic. While I’m sure that those sharing glucose graphs of people without diabetes is never done with any malice – in fact, completely the opposite – I believe it is nonetheless problematic, and misses the point.

I get it. It’s a noble goal to try to make PWD feel less negative when we are unable to manage a perfectly flat line at 4.0mmol/l for hours on end. And to also understand that’s not how the body actually works, even when everything is doing what it should be doing.

But it is totally redundant. And downright annoying. And also, completely inconsiderate.

I live with diabetes and am fixated on trying to limit the variation of my glucose levels because I have to. PWD are told that keeping those numbers between 4mmol/l and 8 mmol/l is the goal. And we’re told that when we go outside of those numbers – especially when we go beyond the upper limit, all manner of nasty things will happen to us. That’s what was told to me the day I was diagnosed with diabetes, and repeatedly what I have seen since.

Showing me your graph that just happens without any effort on your part is not reassuring. It’s pointless. And somewhat heartless. When your level goes up to 12 because you ate a family block of chocolate, it comes back in-range fairly quickly. And not because you had to do any fancy-pants calculations, or micro (or rage) boluses.

When I eat a block of chocolate, whatever happens next is pretty much 100% due to my efforts. I have done some fancy pants calculations. I have had to bolus – maybe once, most likely a number of times – to get my glucose level back in range. And then I sit there and hope that I haven’t over bolused…

Oh – and when you show me that your glucose levels dipped into the low range or sat there for a while, it doesn’t reassure me or make me feel ‘normal’. Because the difference is that when that happens to me, I am doing all I can to make sure that I am okay, that I don’t pass out, that I don’t overtreat (again!), and that I am safe. And then I get to recover from a hypo hangover – something you are fortunate to never experience.

To be honest, I actually find it completely ironic when it is HCPs sharing their data to make me feel better, and a little thoughtless because the reason that I am in constant pursuit of these straight, tightly-in range lines is because it is HCPs that told me in the first place that is where I must stay to ‘prevent’ all.the.nasty.things.

And finally, when this happens, it centres people without diabetes in a conversation that should very much have the spotlight firmly shone on us. Your glucose level data, and the patterns they make are not like ours. They do not represent the blood, sweat and tears, the emotional turmoil, the frustration, the fear that that is somehow reflected in our data.

Perhaps rather than sharing non-PWD data, instead acknowledge just how difficult it is to do diabetes, and commend people with diabetes for showing up, day after day, to do the best we can – regardless the shape of our CGM graph.

A real-life PWD CGM graph. Mine, from about 10 minutes ago.

I have been fairly quiet on Twitter lately. My blog has been dormant, and I’ve really only been using social media to connect with family and friends. Oh, and sharing recent baking efforts – as evidenced by this Twitter thread last night.

But that doesn’t mean that I have stopped following what is going on. Plus, it’s difficult to ignore stuff when many people start sending DMs wanting to know why I have been silent on an issue about which I am known to be very vocal.

I’m talking about last week’s webinar hosted by Diabetes Victoria, presented by Dr James Muecke.

Firstly – some disclaimers and disclosures. I worked for state-based Diabetes Victoria from 2001 to January 2016. Since then I have been working for Diabetes Australia, which is a national organisation.

James Muecke is the 2020 Australian of the Year. I wrote a little about him in this post which caused a shit storm of its own when a UK HCP tone policed me my writing and said that I was doing a disservice to people with diabetes by writing in the post that there is no need for people to know what type of diabetes they live with. Yeah – I didn’t say that, but anyway…

But the issue was not Muecke’s presentation; it was the title of his presentation: Blinded by Sugar.

My reaction when I first saw the promotional flyer was horror. And then shock. And then surprise. I was honestly stunned.

And then, once the surprise and confusion subsided, I felt distress. That feeling of dread, and sadness, and anxiety that settles itself in the pit of my stomach. And doesn’t move.

When I talk about language, its power and how it is personal, this is what I mean. Because to me, it’s not just a couple of words in a clumsy, ill-conceived title. Suddenly, it is every single time I sit in the waiting room of my ophthalmologist’s waiting to hear if diabetes has started to affect my vision; it is the flooding back of words from my first endo appointment, where I was told that if I dared let my glucose levels get above 8mmol/l, it would be my fault if I became blind; it is the blame and shame and stigma and finger pointing that we see and hear every time we are told to ‘look after ourselves’ as if we are wilfully ignoring our health and not caring about our wellbeing; it is the guilt that I feel when I eat some cake or a biscuit and the times people have asked ‘should you be eating that?’; it is the feeling of frustration and unfairness of when I can’t work out how my glucose levels could possibly be high after I’ve done everything ‘right’, and the fear of what damage is happening to me at that moment; it is the burnout, the anxiety the days of feeling so overwhelmed because I just.can’t.do.this.anymore, but I have no choice’.

THAT is how I feel when I see words like those in the title of that webinar presentation.

It’s no surprise that this was picked up by some people in the DOC. There are people in the community who are highly attuned to language and diabetes and will call out any example that is doing a disservice to people with diabetes. I am usually one of those people. I’m not proud that I didn’t say anything publicly when this was unfolding over the weekend.

So, what has happened since then, after some of the DOC shared their feedback?

Diabetes Vic CEO, Craig Bennet issued an apology and should be commended on how swiftly he did that. Owning the error and promising to do better is always appreciated.

Today, it seems that the LCHF bullies have now jumped on board, supporting the messaging in the original promotional flyer.

I will say this strongly and without reservation or apology. When you find that you are satisfying this group, you are not helping PWD. It is a person from this group that tweeted this about a group of dietitians. It is this group that fat shamed me after I gave a television interview last year. It is this group that has stigmatised people living with diabetes, claiming they have brought on diabetes-related complications for daring to eat a scoop of ice-cream.

I couldn’t care less about how anyone chooses to eat. I do care a lot when it comes to how certain groups in the community contribute to the already overwhelming stigma faced by people with diabetes.

And finally, everyone makes mistakes. In the last few months, we’ve seen some pretty miserable efforts by diabetes organisations around the world. But the thing that has stuck with me through each of these is how easily they could have been avoided. We do need more engagement with people with diabetes – especially those who can help shape effective communication and messaging.

This blog has been quiet for the last couple of weeks because, honestly, there is nothing that I had to say that was of any value. Instead, I’ve been listening, learning, talking with friends and family, crying with friends, having difficult conversations with people. And feeling uncomfortable. I’m learning to not fight that discomfort, but instead examine it and work out how I can be involved in change.

Today, I’m dipping a toe back in slowly, and sharing this from New Yorker Cartoons (maybe this blog really is going to become nothing more than an appreciation page of New Yorker Cartoons and Effin’ Birds). This cartoon spoke to me. Because: tone policing.

Recent New Yorker Cartoon by Jason Adam Katzenstein. (Click for source)

I write about being tone policed in the healthcare space, and that is what I am writing about today. It’s happened for as long as I’ve spoken up about my experiences of diabetes and my thoughts and ideas about healthcare. I’ve been called aggressive so many times by HCPs who have not liked it when a mere ‘patient’ has suggested that they are being damaging to people with diabetes in the words they are using to talk to and about us.

The bolshie nuns who taught me at secondary school taught me that when women are accused of being aggressive (or strident), it is usually because we are being assertive. I’ve come to learn that it’s not just women. It’s anyone who has, for too long, been expected to just take what is dished up – and to accept it with gratitude.

Being assertive, being aggressive, being challenging and saying enough is enough should not result in being told to tone down. Or to be excluded from discussions unless we agree to be more moderate. Or more respectful. When that respect is truly a two-way street, then let’s talk about that. But for as long as power imbalances are at play, and HCPs insist on speaking on behalf of us, or only agreeing to speak with us if they like what we are going to say; or when HPCs feature more in diabetes campaigns because they insist on centring themselves rather than actual people living with the condition…well, then we don’t have true two-way respect.

Our diabetes community is not immune from tone policing each other. It’s happened to me. I continue to listen to type 2 diabetes voices because I can never expect to understand what they are experiencing in our community unless they tell me. It may be uncomfortable for me to hear – but that discomfort comes from a place of my complicity. It is not my place to tell them to moderate the way they are speaking about their experiences, just because it makes me feel prickly. But it does happen. In the timeline of my involvement in the diabetes world, I know that when I was first diagnosed, I contributed to the stigma many people with type 2 talk about, and then, as I learnt more, I moved to being quiet about it when I saw and heard it – even though I disagreed with it. Now I am trying to be a better ally and calling it out when I see it. And shutting up and listening and accepting what people with type 2 say.

We learn when we listen. We learn when we are open to accepting that we do not have all the answers. We learn when we stop being so centred on our own experience and try to turn the spotlight onto ourselves when instead we should be shining it on others.

We learn when we don’t tell people how they should feel or how they should speak.

Follow Diabetogenic on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Read about Renza

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

Archives

Twitter

%d bloggers like this: