If I’m asked about the burden of diabetes stigma, a complex tree diagram starts to form in my head. There are branches sticking out at weird angles with arrows and overlapping segments and odd clusters…and I suddenly become burdened just thinking about diabetes burden!

I’ve written before many times about just how heavy diabetes can be – a dense weight that comes from the never-ending need to ‘do diabetes’ and the never-ending attempts to make sense of it all. And I’ve commented on the emotional weight that we feel when diabetes becomes overwhelming and distressing, and the burden of burnout. And I’ve also written a lot about the relentless stream of diabetes admin – and why having a personal assistant to manage my diabetes would be just so damn useful to alleviate the burden of appointment making, prescription filling, consumables stocktaking and complications screening

Burden takes on many forms. And it means different things to different people. If there is a burden spectrum, we would see people plotted all along the line. And we would move around as well. I know that there have been times I’ve feel far more burdened by diabetes, and I know that I feel so much less burdened since I’ve been using Loop because the tasks that added to that daily burden have diminished considerably. Diabetes makes a lot more sense a lot more of the time without me needing to work it out. Of course, the weight is less. 

But on top of the daily tasks and the feelings of being overwhelmed, there is still more that can contribute to burden. One of those things is stigma – the way others make us feel about diabetes – about our diabetes – can add significant burden. 

Yesterday, I tweeted this:

If you want to see an incredibly diverse and interesting discussion about how stigma has impacted people with diabetes, and parents of kids with diabetes, click on the tweet above and read the replies.  I asked the same question on my Facebook page and the stories there were equally harrowing. People’s experiences are heartbreaking. It becomes clear why people drop out of healthcare, are terrified to see HCPs, or try to hide their diabetes from others when you understand how they have been treated. 

The weight of that burden is heavy. The judgement and blame and shame can weigh us down. The emotional weight of stigma can be paralysing. 

One of the themes that is recurring when it comes to stigma discussions is the idea that we are not doing enough to look after ourselves. That could be in reference to developing long-term complications, or it could be an in-the-moment situation that someone thinks we should be better prepared for. I remember someone once criticising me for not having any jellybeans on me when I was having a hypo. I’d had three hypos already that day, and had worked through my stash. I wasn’t wilfully neglecting my diabetes by being caught short. But that was the assumption. 

Another theme is that diabetes is a character or personality flaw, brought on by not caring enough about out health. How tiring it is to have that being said when we are also trying to simply manage to live with diabetes. Weight stigma and diabetes stigma go hand in hand for many, with assumptions made left, right and centre. 

Being diagnosed with diabetes creates burden. Living with diabetes brings daily burden. Worrying about how diabetes might impact our futures crafts more burden. And stigma adds even more. It’s exhausting, hurtful and just downright unnecessary. 

More musings about diabetes and stigma

Stigma & diabetes-related complications

Owning my own contributions to diabetes-related stigma in people with type 2 diabetes. 

Where does stigma start? 

How insisting on defining diabetes when it doesn’t matter adds to stigma

The Merriam-Webster word for 2020 was, perhaps unsurprisingly, ‘pandemic’. But I do think it could have just as easily been another word that we were seeing absolutely everywhere, and that word is unprecedented. 

I started to despise that word. Everything about the COVID-19 pandemic – indeed the pandemic itself – came with the descriptor ‘unprecedented’. From the (unprecedented) stockpiling of loo paper, to the (unprecedented) times in which we were living, we were firmly reminded at every turn that we had never, ever, ever seen anything like this before. It was all novel.

Which is the opposite of diabetes. Diabetes is always precedented. There is nothing novel about diabetes on a day-to-day basis. Sure there is the occasional curveballs thrown at us, but the normal, daily routine of diabetes is mind-numbingly not new!

Variable glucose levels with no rhyme or reason? Precedented. 

Frustrations at constant lows or stubborn highs? Totally precedented. 

Plummeting glucose levels just before bedtime? Precedented. 

No two days of diabetes the same? Precedented.

An inability to bolus correctly for rice (or whatever your food nemesis may be)? Precedented.

PWD being left out of conversations and decisions about our own condition? Oh-so-precedented! 

Running out of jellybeans when hypo? Precedented. 

A pump cartridge running out just before bed? Annoyingly precedented.

Stigmatising comments about diabetes? Boringly precedented. 

The monotony of diabetes – the complete Groundhog Day of it all – is the antithesis of what we have witnessed over the last year and a bit. 

But whether it is all new (unprecedented!) or mindlessly boring (precedented!) pandemics and diabetes are both pretty damn crappy.

Unprecedented 2020 by Qunadamooka woman and contemporary artist, Megan Cope. Photo taken by me at one of my visits to the NGV Triennial.

Ten years ago was the first time I wrote something about some so-called celebrity making a thoughtless comment about diabetes. That’s right, that piece was written in 2011.

And yesterday, my Twitter feed was lit up with people commenting on some bloke on TV in the UK who made a stigmatising comment about diabetes, because of course that’s what people with unsophisticated senses of humour do at Easter time.

I muted a heap of terms because I couldn’t be bothered reading the replies. Why? Because I’d read them all before. I’d probably written a few of them myself.

I have nothing more to write, because I have written about this countless times. Diabetes bloggers and advocates who have been around the traps for longer than me have written about it countless times. We’ve seen it all before. We’ve said it all before. For ten years I’ve been banging on about it. Welcome to the table if you’re joining in now!

Here is what I wrote in this post, after a cafe named one of their wonderfully decadent desserts ‘diabetes’, because, haha, how funny, no one has EVER made a joke like that before:

‘But there is definitely room for a discussion about why diabetes continues to be seen as fodder for bad jokes, and mindless behaviour like this. Until we get the language about diabetes right, this will continue to happen. Again. And again. And again. That is the discussion I’m interesting in having now.’

I may be done writing critiques of B (C, D, E) – list celebrities being stigmatising jerks about diabetes. But I am not done talking about language. THAT is the issue here. For as long as diabetes is seen as an easy punchline; as long as people with diabetes are seen as an easy target; as long as diabetes is considered a lazy condition that deserves no understanding, this is going to keep on happening.

More? Oh, there’s plenty more…

The time (alleged) comedian Dave Hughes made a joke about diabetes.

The time Jame Oliver called a Coke can diabetes.

The time a cafe named a dessert diabetes.

The time the CrossFit CEO made a stigmatising comment about diabetes.

The time I wrote that #LanguageMatters is not about being nice, which coincided with Paul Hollywood referring to something as diabetes on a plate.

Last week, I posted this on Twitter:

I take no credit for these numbers or that straight CGM line, or the first thing in the morning number that pretty much always begins with a 5. Those numbers happen because my pancreas of choice is way smarter than me. Actually, in a perfect world, my pancreas of choice would not be outsourced, but what are you going to do when the one you’re born with decides to stop performing one of its critical functions?

Anyway. I should know by now that any time diabetes thinks I’m getting a little cocky or too comfortable, something will happen to remind me not to get used to those lovely numbers. 

And so, we have Tuesday this week. I woke up with a now very unfamiliar feeling. I reached over and looked at my CGM trace which immediately explained the woolly-mouth-extreme-thirst-desperate-to-pee-oh-my-god-I’m-about-to-throw-up thoughts running through my head. I found the culprit for that feeling very quickly – a pump with an infusion set that had somehow been ripped out overnight.

I didn’t get a screenshot of that number in the high 20s to share, because my head was down the loo. Ketone-induced vomiting is always special first thing in the morning, isn’t it?

I put in a new pump line, bolused and waited, all while resisting the urge to rage bolus the high away. Because that’s all there is to do, isn’t there? I hoped that just waiting and allowing Loop to do its thing would work, and that everything would settle neatly – especially my stomach which was still feeling revolting.

And as I lay there, I had another feeling that is somewhat unfamiliar these days: the feeling that I absolutely loathe diabetes. Beautifully mimicking the waves of nausea were the waves of my total hatred for this condition and how it was making me feel and the way it had completely derailed my morning’s plans.

I don’t feel like that most of the time anymore, because diabetes so rarely halts me from taking a moment out to deal with it. Hypos are so infrequent, and so easily managed; hypers that need real attention just don’t happen; sleep is so seldom interrupted because of diabetes anymore. Life just goes on and diabetes drones on in the background – annoyingly, but not too intrusively. 

But this morning was completely handed over to diabetes to wait it out for my glucose levels returned to range – thankfully with a gentle landing and no crash – and for my stomach to stop lurching. Ketones were flushed and the feeling of molasses-y textured blood running through my veins subsided.

By the afternoon I was feeling mostly human, with nothing more than a slight hangover from the morning. But the feeling of diabetes hatred had been reignited and was flashing through my mind constantly. 

A couple of days later, with a full day of decent numbers behind me, there is no physical aftermath of those few hours of diabetes trauma. But there is a whisper of the absolute contempt I feel towards diabetes. It’s always there, I guess. It just had reason to rear its ugly head.

There are a lot of words that get thrown around the diabetes space to describe people involved in advocacy and support. These include (patient) leader, influencer, advocate, supporter… the list goes on. Some people prefer certain terms; others don’t. Some people don’t want to be labelled. 

I had no idea the word ‘advocate’ was a loaded word in some places. I sprinkle it around like glitter – because I see it as a term that typically describes people doing really great things – and not just in diabetes. 

It’s a word I’m comfortable with for myself.

It’s a word that I connected with others when I first started volunteering in diabetes – before I was working in it – because I could see that there were people with diabetes making a real difference to the lives of others with the condition. 

It’s a word that I attach to people standing up, showing up and being counted. I asked on my FB page about the word, and someone said they like it because it not only refers to the person, but also the actions they are taking (thanks for that gem, Cathy). 

But while it’s a word that I feel relaxed with, it doesn’t seem to be sit all that comfortably with other diabetes folks around the globe. (Which is, of course, fine. We can use whatever words we want to describe ourselves and what we do.)

I’m not sure if it is a cultural thing, or if it is just a preference. I’ve learnt that some languages don’t have a word that literally translates to advocate, but someone from Sweden told me she uses the English word, because it most adequately describes what she does. And in some places, people are very reluctant to use the word to describe themselves. After I asked about it, a number of people contacted me privately to say that they would like to use it for themselves, but they are worried about what others may think. Interestingly, they were all from the same part of the world. 

Last month, I was an invited speaker at an event for people with diabetes in South Africa, and I was asked to speak about how the DOC has been a source of support for me in my years with diabetes. The event was titled Diabetes Influencers Summit. Now THAT’S a word I’m NOT comfortable with! I spent the first few minutes of my talk explaining why I’m prickly about the word and how I see what I do as advocacy, not influencing, and that I consider myself an advocate, not an influencer. 

In my mind – and of course this is just my own assessment – influencers are building a brand for themselves, while advocates are more focussed on community. There is NOTHING wrong with building a brand – we all do it to a degree. But the advocates that I met and followed when I first started hanging out in the DOC were the ones that were truly all about community. They’re the ones I engage with now.

I don’t know any advocates who have made a squillion from their advocacy work. I don’t do sponsored posts here (or on any other of my socials). If I have been given product and then choose to write about it, I mention that in my wordy disclosure statements at the end of posts (and frequently throughout them as well), but I have never received money for what I have written, even though I am contacted almost daily with offers. I am a freelance writer, so I get paid to write elsewhere, but that’s my side hustle, writing is my job, and I should be paid for that. 

No one has to call themselves an advocate – because of course that’s fine! – but I am saddened when those of us who do use the word are criticised, or considered to be ‘above our station’. (Ugh – just writing that makes me feel sick. Aussies baulk at class systems.) 

Being an advocate doesn’t mean that I think I speak for others. I have never heard another diabetes advocate share their story with the message that they are representative of everyone. It also doesn’t mean that the issues that are important to me MUST be important to others – or that they’re the most important issues. I like to think that many of those issues that I’ve spent 20 years advocating for – access to healthcare, drugs and technology; PWD being recognised as experts in our care; respect from HCPs; the importance of using language that builds us up, rather than tears us down; working to diminish diabetes stigma; the philosophy of ‘Nothing About Us Without Us’; highlighting the need for more research about women’s health and diabetes – are universally acknowledged as issues that, if addressed and improved, can mean better outcomes for others with diabetes. But, these are my things and #YDA(dvocacy)MV. 

Last week, I attended the Shifting Gears Summit which was coordinated and hosted by the Consumers Health Forum of Australia*, and the word ‘patient leader’ was used a lot. I realised that I was bristling with the term leader, not necessarily because I object to it, but more because I know how others would react if we started using it widely. I wonder why I feel that way. I happily and easily acknowledge many diabetes (and other health condition) advocates as leaders in what they do, knowing that they too may cringe with the label. 

And yet, others working in the healthcare space are considered leaders – and usually, quite rightly so. We recognise HCPs, policy makers, hospital administrators, researchers and industry representatives as leaders in what they do, however the term seems to not be quite so comfortably applied to those of us with lived experience. But surely our experience and our role should be equal when all stakeholders are engaged. Otherwise, are we just there as window dressing? When an HCP offers their opinion on a diabetes issue, it does not necessarily mirror that of all HCPs, and yet no one questions their right to share that opinion. But despite this, they will be identified as leaders in their field. Why is that not also afforded to diabetes advocates?

It is definitely worth noting that I have rarely, if ever, seen, heard or had pushback from the HCPs I’ve worked with at the term advocate, or even leader. In fact, on a number of occasions I have been horribly embarrassed with the words – the very kind words – that have been used to introduce me. I’m always very touched that they see me in that light, but I am horrified at how other people with diabetes might react to their words. Why do some people with diabetes (myself included) want to distance ourselves from these descriptors?

Is it because in most cases people who are doing the sort of work we do are unpaid volunteers? Or is it because the status of the ‘patient’ is considered below that of others working in the healthcare space? Is it because there is no formal qualification needed to become an advocate?

Whatever it is, I don’t think we do ourselves any favours, or any favours in the endeavour to ensure the lived experience voice is considered as important – if not THE most important – in discussions about diabetes. In fact, that sort of rhetoric does nothing more than keep us in our place – that of a measly patient who can do no more than share their own tales of woe. When we say, or are told, ‘You’re only telling your story’, that devalues the contribution of advocates. It’s already hard enough to be heard, but then to be told that our story doesn’t mean much is offensive and harms us. I would never think to tell another PWD that, and it saddens me that others do.

We don’t have to label ourselves in any way we don’t feel comfortable, and we can describe ourselves and what we do in diabetes how we would like. I’ll keep throwing around the word advocate, and use it to describe myself. And continue to elevate the people with diabetes in the community who I see as being advocates, too. 

*DISCLOSURE

I received a scholarship to attend the CHF Shifting Gears Summit after applying through an open submission process. Registration was paid for by CHF. I was not paid to attend.

Click to be taken to a great Twitter discussion about advocacy in the DOC

Living a positive, sanguine life with diabetes is not impossible. And by and large, I don’t spend most of my time thinking about the scary stuff and asking myself ‘what if?’. But it’s not always easy, even for those of us with a mostly Pollyanna-ish disposition. Whether it’s hearing difficult stories or seeing a crappy diabetes health promotion campaign, I find myself frequently triggered and start to think about how that very first introduction to diabetes that so many of us receive, sets us up to believing that there is nothing more than doom and gloom ahead of us.

But with all the worry about what diabetes could bring tomorrow, how much happiness and light are we sacrificing today? 

I worry about things and I know they may never happen; things that are not even hinted at today when I have my annual screening checks. But even as I breathe a deep sigh of relief after seeing my ophthalmologist, or receiving the results from my kidney check, I don’t stop worrying. The ‘All is good’ in this snapshot moment is reassuring, but somehow never enough.

Perhaps it’s because diabetes has a way of never just being about the here and now. The way it’s often spoken about means there is so much pressure to do right today in order to be right tomorrow. 

The ‘What if?’ questions that I seem to have on repeat cast a constant cloud, sometimes more thunderous than at other times, over so many of my days. 

Over the years, this has been one of the issues I’ve addressed with my psychologist. I have learnt to respond to ‘What if?’ questions with ‘What if it doesn’t happen?’, or to be practical rather than theoretical. This has been hugely helpful. As has saying ‘You are not at that bridge right now; you don’t need to know how to cross it.’

Just how much am I robbing myself in the here and now when I spend too much time thinking of hypotheticals of the future? How much happiness have I already lost to those hypotheticals? How much time and energy have I wasted being drawn into moments of doom, when the reality is that, in the moment – in my diabetes present – there are no clouds? No clouds at all…just blue skies.

Blue skies in New York when we last visited at the beginning of 2020.

More on this?

Random thoughts 

What if we started differently? 

The Worrier 

Last night, I had the honour of speaking at the World Health Organisation Informal Consultation on Diabetes, which is currently taking place as a virtual event. It’s a three night/three day (depending on where you are in the world) event that has brought together people living with diabetes from all corners of the world. 

This was a widely advertised event, and anyone could apply. The expression of interest call out was all over Twitter, Facebook and diabetes community groups. Unlike some other initiatives and programs, PWD didn’t need to be nominated by a diabetes organisation or HCP to be part of it. You just needed to fill out the application form (which didn’t take too long), and submit. Clearly a lot of people with diabetes saw it and thought it was something they wanted to be involved in! I’m not sure of the overall numbers, but there is certainly terrific representation from a number of communities. 

On my Zoom screen I could see a combination of familiar faces, faces of people I know of but have never met or engaged with, and a whole lot of new faces. Hearing their stories, and reading the discussions that are filling up the chat box are enlightening. And reassuring. Because once again I was struck by how strong, vulnerable, admirable and strong-willed others treading the diabetes path can be. There are striking similarities and glaring differences. But common threads that run through the narratives we heard And mostly? There is support and gratitude to be there and to bear witness to others sharing their stories, ask questions and learn. Not a single snipy comment or passive aggressive remark – not because we all agree or are a homogenous group. But rather because we respect and value and admire the people who have the courage to stand up and be present. 

I was invited to speak in a session about diabetes advocacy. The session’s title was ‘Strategic communication in global diabetes advocacy’, and it included Christel Marchand Arpigliano from Beyond Type 1 and Lauren Carters-White, a research fellow from the University of Edinburgh. Christel spoke about how when we tell our diabetes stories, we are translating the language PWD use – language that makes sense to us – into words that reach a broader audience. 

Lauren used some terrific examples from around the world to show the impact data and evidence can have in advocacy efforts. 

And I rounded out the session by talking about how when we bring the two together, we win the hearts and minds of the people we are trying to influence – decision makers, legislators, policy makers, educators, healthcare professionals and researchers. Because when we have the emotional pull of how diabetes impacts on daily life, combined with the evidence to show what that means, we can’t be ignored! I highlighted how working with healthcare professionals and researchers to further our messages means that our lived experience can’t be dismissed. 

I also spoke about how the power of stories is magnified when there are many voices and many different narratives. I have rarely, if ever, heard someone share their diabetes with the pronouncement that they speak for all with diabetes, or that their story is THE story. But they are all experts in their own lived experience and that certainly should be celebrated. And its power should not be underestimated. 

I think the thing I have felt most strongly in that Zoom room is the camaraderie and solidarity – again, not because we are all on the same page and all want the same things. But rather, everyone truly supporting each other and bringing others into the conversation has been an overarching quality of the meeting. No one dominates; no one is more important than anyone else; no one claims to be THE advocate. We are all advocates working together, and supporting each other for a bigger cause. 

Of course, we want, and expect, to see action come from the three days of meetings and workshops, and I have confidence that will happen. But in the meantime, to have such large group of dynamic people come together whose only agenda is community and to build each other up, rather than tear each other down, reminds me that THIS is what diabetes advocates can do and what the community is mostly about. Those snippy voices who try to minimise people who are truly trying to improve outcomes for people with diabetes aren’t present. Because what a waste of time that would be!

I may have spoken about, and given tips about how to win others’ hearts and minds in my talk, but it’s my own heart and my own mind that have been won over by my peers in this event.

(You can follow along the discussion by using the hashtag: #WHOPLWDs)

Disclosures

None. I am not being paid to attend this event, and have not received payment, honoraria or in kind donations for my presentation, and am attending in my own time. I might need a nap later today though, because the 11pm-3.30am time for Aussies on the east coast is tough going!

Every year on International Women’s Day, I write a post about the incredible women in the diabetes world doing remarkable things for the community. I’m going to link to some of them at the end of today’s post because they highlight some truly brilliant women making a difference in the lives of so many, and their stories should be told, and contributions shared. 

But today’s post isn’t about that. Today’s post is more about the way that women in diabetes often get treated. I should point out that a lot of what I’m writing about isn’t unique to diabetes. It’s seen time and time again in healthcare, and in health communities. But my space is the diabetes world, and that’s what I write about, so here goes. 

So-called ‘women’s issues’ continue to be under-represented in research. Those issues and concerns are dismissed and ignored, and women are simply told to ‘deal with it’. Sexual function can be as relevant for women as it is for men with diabetes, and yet, do a search using the words ‘sexual dysfunction and diabetes’ and you’ll need to scroll a long way into the 32,000,000 results before women are mentioned. 

I have sat on panels and been spoken over, and sat in audiences as I’ve watched women be spoken about and over. Last year, I spoke in a session at an international conference and then was the only PWD in the panel discussion at the end of the presentations and the chair (a male HCP) answered all questions directed at me. 

Conference organising committees continue to be majority male, and award lectures seem to be more frequently given by men – and white men at that.

I sat in an online conference last year and was astonished to see that the woman whose contribution to one of the most significant advancements in diabetes tech in recent years was minimised. Thankfully a number of women in the audience corrected the misconception, and then had to deal with having mansplainers tell us all the ways in which we were wrong. (Spoiler: we were not wrong.)

I have heard so many mothers (and sometimes fathers too, but usually mothers) of kids with diabetes tell stories of being dismissed when they took their kid to the GP with symptoms of diabetes. They were told that they were imagining things, and there was no need to investigate further.   

Remember the furore we saw when the IDF dared to focus women for WDD a few years ago? So many fragile egos were hurt because the challenges unique to women were centred in this ONE campaign.  

I’ve been called a girl in meetings (still, at 47 years old), and seen the same happen to other women – women who are professional, qualified, experienced and absolute leaders in their fields.

And then there are the words used to speak to and about when, because of course, I’m going to talk about language. 

I asked about this on my Facebook page the other day and these were some of the words and phrases that women who had called out shitty behaviour from men were called:

Angry. Aggressive. Hysterical. Dramatic. Attention-seeking. Pushy. Loud. Hormonal. Over-sensitive. Too much. Shrill. Strident. Opinionated

We’re told to calm down, moderate our words, and when we dare call out crap, we are gaslit and belittled, and told that we need to chill out.

How often do you see the same language used to describe men when they are calling out crap? It’s more likely they will be identified as brave, assertive, progressive …

In our own diabetes online community, it is fascinating to see how often this happens when women share experiences or lousy experiences, or simply have an opposing view. I have never believed that everyone needs to get along, but look at how comments, subtweets, even direct messages work and you will see the gendered language that is used to scorn and dismiss women. The label of the ‘angry woman’ is alive and well when a woman stands up. For extra credit, the ‘angry old woman’ tag adds some ageism to the sexism.

These words are used to minimise, dismiss and silence our voices. And it works. The number of women I know who have stepped away from support communities because of the way they have been spoken to or about is significant.

I usually like to use this day as a chance to celebrate women, because we deserve to be celebrated. Our contributions to the diabetes world are significant. The diabetes community has been fashioned by amazing women doing amazing things. 

But it has also been shaped by women being silenced, reduced and curtailed. And that also needs to be recognised.

Previous International Women’s Day posts:

2020 – Strident women

2019 – Interweb jumble – the IWD edit

2018 – The women

2017 – Hear me roar

2016 – The F word

During a recent briefing call for a grant assessment committee I’ve been invited to join, I got a little sassy. My role is that of ‘consumer advisor’ – that is, someone who can lend their lived experience knowledge to assess the real-life application of the grant proposals, and the research methods outlined. 

So far; so normal. I’ve sat on a number of similar committees over the last decade or so. The committees I really enjoy working on are when I am not the only non-HCP present. I love it when there are a number of people there for their real-life experience. 

Today, I think I may have been the only non-HCP on this call, but there may be others involved who simply couldn’t be there at the nominated time. 

The call today was pretty stock standard – timelines were explained, the IT system we’ll be using was described and the roles and responsibilities of the different people on the committee were clarified. And that’s where things diverted from what I’m used to.

As a consumer advisor, I am able to provide feedback about the different applications – just as all the HCP committee members do. There are primary and secondary spokespeople for the committee (both HCPs), and during the meetings to decide the outcomes of grant applications, they will provide most of the comments. After that, all others on the committee offer anything further. And then it’s time for the committee to score each assessment.

Everyone except the consumer advisors that is. My role will be to provide a ‘consumer perspective’, but I don’t get to provide a score. The scoring is what determines the success (or otherwise) of a funding application.

I sat through this meeting, listening carefully to the process being outlined, wanting confirmation that I had read the information accurately. Was the role of consumer advisor limited to just being able to make a comment?

When it was time for questions, I politely asked if I had understood correctly.

Unfortunately, I had. 

I was given an explanation that this the process, set out by the governing department believes that consumer engagement and involvement in the assessment process is crucial and very important to the process, and that consumer comments are invited, but our vote is not. 

There was a pause. A long pause. And then a longer pause. Thankfully, this was not a zoom call – it was an old school teleconference – so the others on the call couldn’t see the thunderous expression that had settled on my face. The pause still hadn’t ended.

So, I jumped in.

That sounds like the definition of tokenism, doesn’t it? We are there to provide comment and put forward our thoughts, but we cannot actually contribute to the part of the process that actually determines outcomes.’ I knew the next words that would be coming out of my mouth. ‘We have no real ability to influence. I find it difficult to understand how this can be considered meaningful engagement if we have no authority in the scoring process. That’s not how engagement works, it’s just…’ (Window dressing. That’s what I wanted to say.) ‘…it’s just a tick the box exercise.’ 

That was when the patronising comments came from others on the call. I should say that I don’t think they intended them to be patronising. But they were. 

‘Oh, can I just say that I have been involved in similar processes and we always were happy to listen to the consumer advice consider it in our scores.’

‘The consumer feedback is important and has been very useful in the past.’ 

‘The consumer advisors are able to provide comments and they do. That’s really valuable feedback for us to consider.’

I said nothing. Because I honestly couldn’t care less how much I was listened to. And I know that what I – and others in the same role as me – have to say is valuable. It doesn’t matter which way it is spun, without a vote, I am not an equal member on that committee. That is the actual and perceived reality of the way it is structured 

And more frustrating is that in the minds of many, there would be the perception that consumers had been effectively consulted. The lived experience is represented, they can add that to their report (because, undoubtedly there is a KPI that says consumers must be consulted) and all is okay. That tick the box exercise of inviting consumers onto the committee would be considered enough.

It’s not. In fact, it’s more problematic that not inviting us in the first place. I have said this before, and I keep saying it: without the ability to influence, without the means to be part of decision-making processes, strategic planning, governance structures, then all that is happening is tokenism. It is window dressing. And that is not good enough. 

Searching for images for ‘window dressing’ this came up from my favourite Thesaurus.plus (Click on image to go to site.)

More on this topic

Power to influence

True partnerships 

Excluded from power

One evening this week I made pizza scima, a flatbread from Abruzzo.

Baking bread became a pandemic hobby for me. I love it, but the process takes time. Time to knead and time to rise. Time to punch down before the second rise. It’s a slow and calming practice that I have learned to appreciate. Baking bread became abeautiful way to mark the hours of a lockdown afternoon and I delighted in stopping in between work calls to take a peek under the cloth that was covering the dough, as it was snuggled – and getting ever more snuggly – in a bowl by the heater (in winter) or sunny window (in warmer weather). The oven would heat up the kitchen and as we sat down to dinner, a golden, crunchy loaf would emerge, ready to accompany whatever was being served up. 

But days are returning to somewhat (new) normal here and there is less time. No lockdown means a different pace during the day, because I now inevitably rush out during lunch hours to run errands or stop off for a quick visit to the fruit and veg market before work gets started. Or I’m slowly venturing back into the office for a day here or there. All this means that those minutes that lent themselves to slow food activities now run into each other again: time is not as leisurely as it was, and suddenly it’s dinner time without time to make a loaf of bread. 

But on this day, I wanted bread; fresh, homemade, just out of the oven, bread. 

And so, I made pizza scima! It’s a five-minute process where all the ingredients: 00 flour, olive oil, salt, bicarb soda and white wine get tossed into a bowl, mixed together and then flattened on a tray. The dough is scored, and the oven does the rest. No kneading, no proofing, no resting, no rising.

Half an hour later, a stunning crispy on the outside, chewy on the inside flatbread emerged and honestly, it is the best bread hack there is to know. (Plus, the recipe calls for only a little wine in the dough meaning you have something to drink with dinner!) Viva gl’Abruzzesi!

There’s nothing like adding a sneaky little shortcut to your repertoire – whatever that may be. I think that often people with diabetes become super smart at finding these sorts of little techniques that become a snappy solution to a diabetes problem. 

Yesterday, I learnt a new diabetes hack thanks to Kelly Kunik, DOC old-timer who writes at Diabetesaliciousness. Here is what she shared via a collaboration with Ascenisa*:

This reminded me of one of the topics for Diabetes Blog Week. For newer folks to the DOC, DBlogWeek was an initiative of Karen Graffeo who used to write at Bitter~Sweet Diabetes (seriously, check out all these people and their blogs). Each year, Karen would coordinate this monster effort, coming up with different writing prompts and then setting up a platform for them to all be collated in one space. 

Back in 2014, one of the topics was diabetes hacks and ninety-five diabetes bloggers all wrote posts sharing tips and tricks they have discovered that goes towards making their diabetes a little easier. Here’s what I wrote. I’m so pleased to find that all the other contributions are still all together on this link, and I’ve just spent a delightful hour scrolling through and re-reading some of them, getting a refresher on some super ideas from super people!

Call them hacks, call it inspired improvisation, but MacGyvering the fuck out of diabetes is a talent worth cultivating, because you never know when a diabetes moment will call for it. 

DISCLAIMER

I am on the Editorial Board for Ascensia Diabetes. I am paid for the pieces I write that appear on their blog. Kelly is also on the Ed Board. Sharing this for no other reason than it blew my mind!

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