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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

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

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!

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

I know…it’s almost Christmas. And if you are anything like me and mine, you’ve left the run of gift buying a little late. Or you’ve wound up in lockdown. Or the thought of battling crowds is not something that you are all that keen on because there are too many un-masked bandits in the shops.

And so, here’s another little reminder that there is no need to panic because Insulin for Life is doing Secret Santa and your can absolutely buy the BEST. PRESENT. EVER. with heaps of time to spare. All without hitting pause on your Netflix binge!

It only takes $5/€5/£5 to make a real difference to a person with diabetes in an under-resourced country. That small amount will provide a week’s worth of insulin and diabetes supplies to someone who otherwise might not have them.

My family made the decision this year that in lieu of gifts for my cousins’ kids, we’d make donations instead. We absolutely adore these kids, but know that they probably won’t miss the book or book voucher we usually give them. And we also know that making a donation in their names literally means saving a life. That seems like a pretty good trade.

Without a doubt, 2020 has been horrid for many, and those doing it toughest were already likely doing it tough even before a year-long pandemic. If you are in the position to make a donation to this cause, please do. If you can share the link to the donation page with friends, colleagues and loved ones, please do.

I know that the diabetes community comes together to support our own beautifully. We’ve seen it in a million different ways. I’m hoping that in the lead up to Christmas that support will look like people making donations to Insulin for Life…and encouraging others to do the same. Please do help if you can.

Easy, impactful and nailing your Christmas shopping just by clicking on the picture above!

I’m loathe to talk Christmas while still in November. In fact, we have rules in our house that we do not even mention the word until after my daughter’s and my birthdays which both fall in the last week of the month. 

However, the other day as I was doing some supermarket shopping, I heard the strains of Silent Night and noticed glittery decorations starting to adorn the streets. Honestly, this year is so all over the shop that I have no idea what month it really is, but if Woolies wants me to believe it’s the festive season, who am I to argue?

And so, let’s talk Christmas…specifically this:

We all know how tough this year has been. We all know that there is no corner of our globe that has not been touched some way by the COVID-19 pandemic. What we should all also know is that even though COVID-19 may be global, there are some people who have been disproportionately affected, and it is always the most vulnerable people in the most vulnerable places that find themselves in that situation. Contrary to the idea that COVID doesn’t discriminate, people already doing it tough are finding things even tougher. 

Which, to me, means that for those of us who can, now is as good a time as ever to step up and support anyone finding themselves in that situation. 

I’ve been trying to get rid of the tradition Secret Santa or Kris Kringle (or whatever you call it in your family or workplace) for years now, instead directing those funds to a charity that supports people with diabetes living in under-resourced countries . You can read my grinch-like posts about that here and here oh, and here, where I yell that NO ONE WANTS A BATH BOMB!! It’s true. NO.ONE.WANTS.A.BATH.BOMB.

BUT! People with diabetes want insulin, diabetes supplies and education, and by ‘want’ I obviously mean ‘need’. (NO.ONE.NEEDS.A.BATH.BOMB.)

Insulin for Life Global is a charity that helps people with diabetes in need of the things that I (try really hard not to) take for granted. I have spoken and written a lot about Life for a Child (LFAC), mostly in relation to the Spare a Rose campaign. Insulin for Life Global picks up where LFAC ages out. Because, diabetes is for life, not just until you’re 26 years old.  

This year, Insulin for Life is launching its new #IFLSecretSanta campaign and is asking the diabetes community to please get on board. I’m totally on board with this Secret Santa campaign because it will be more than just a novelty gift that is likely to end up in landfill.  

A donation of $5 (or €5 or £5) will provide a week’s worth of insulin and diabetes supplies to a person with diabetes in one of the countries supported by the charity.

I asked around, and it seems that most office Secret Santa gifts have a limit of $10. That’s two whole weeks of diabetes supplies (including insulin) to an adult with diabetes who might otherwise not have it. If your whole workplace gets on board (or family, or friendship group, or book club…) that suddenly starts to add up to a whole lot of weeks of diabetes supplies!

As with any campaign like this, it works best when people share to help raise awareness of just how easy it is to be a part of it. AS well as making a donation, it would be terrific if as many people in the DOC could share details of the #IFLSecretSanta drive and encourage friends and family to donate. 

I promise that no one is going to miss not getting a bath bomb. But people with diabetes, unable to access or afford essential diabetes meds and supplies, will be grateful if the money for that bath bomb was redirected to the charity that helps them. 

Okay, DOC, now’s the time to do our thing. We do this and we do this well. While there are lots of people in this community and we certainly do not all agree, or even all like each other, it’s campaigns like this that seem like a good time to put aside differences and come together. Let’s see just what we can do to help Insulin for Life and their first #IFLSecretSanta campaign. 

Donate here. (It will take you straight to PayPal to donate, and your donation will go directly to Insulin for Life.)

Share this.

Hashtag away on your preferred socials: #IFLSecretSanta

This week, it’s EASD. It’s is the first year since 2012 that I have not been in Europe for the meeting. EASD was the first large diabetes professional meeting I had ever been to, and I remember being struck at that very first one in Berlin by the stark absence of people with diabetes on the program and involved in the actual meeting.

My, how things have changed.

Except, of course, they haven’t. Sure, these days you will see growing numbers of PWD wandering the conference centre and attending sessions, but that really is only because we created opportunities for PWD to attend. And once we found a way to get there, we then made sure that we were visible in different ways such as leading social media charges and holding events open to all attendees.

There has been some very well placed and relevant conversation on twitter about the lack of diversity in the EASD organising committee. Too few women; too many white faces. But when we talk about inclusion, surely, surely we need to look at other groups that are significantly and obviously absent. Where are the advocates on there? Where are the BIPOC with diabetes? Where are people living with both diabetes and disabilities? Where is there representation from the diabetes LBGTIQ community? All of these factors impact on diabetes management, so wanting to see presentations that address them makes sense. And where is the lived experience on the program to underline, and provide real relevance, to the work that is being presented by HCPs, researchers and academics?

You bet there should be more women and more BIPOC on the organising committee for EASD. But if those on the committee, those doing the research, those HCPS seeing PWD truly want to beat the ‘person-centred’ drum, PWD need to be part of the group of people putting the conference together, and then strongly represented on the stage too.

#NothingAboutUsWithoutUs seems to STILL be missing from this whole meeting – from the organisation right through to the actual delivery of information. (I suspect that there may be some PWD on the program who are HCPs. While that is terrific, it is very different from having advocates who are not HCPs up on stage.)

So, this week, if you can, please support initiatives that do highlight the people who are actually living with diabetes. Please check and double check the times. I’ve tried to work out the AEST start time for all of the events, but don’t take my word for it! (Disclosure statement at the end of this article.)

#docday°  & #dedoc° voices

This is the eleventh (I think??) #docday° event and I am so proud to say that I have been involved in every single one of these events. The first one was held in the back room of an overheated and overcrowded café in Stockholm five years ago. It feels like yesterday, and a lifetime ago all at once. Organiser, Bastian Hauck, asked me to say a few words, and this is what I wrote in a blog post about the event:

‘I highlighted for me what is the most important thing when we are talking about the DOC: No one owns this community. No one is more important or more relevant or more powerful. Sure, some of us are very fortunate that we get to actually meet IRL and attend conferences, but we do it as part of our jobs – whether it be like me (through my work at a diabetes organisation mixed with my online work) or through independent consulting or other work. But regardless if you are in the room or following along on Twitter, everyone has the same right to be here and to be part of it.’

We have livestreamed #docday° events in recent years, and I have written about most of them, and done all I could to encourage as many people as possible to come along and join in. This year, it will once again be livestreamed from the #dedoc° Facebook page from Tuesday (today) 12pm CET tonight, which is 8pm AEDT.

Also, make sure you keep an eye out for all the terrific advocates who received a scholarship to attend EASD via the #dedoc° voices program. They are sharing what they are seeing at the meeting on a variety of social platforms.

SOLVABLE PROBLEMS IN DIABETES

A few hours later, diaTribe will be continuing the Solvable Problems in Diabetes events which have been regular satellite events at European diabetes meetings in recent years. During COVID times, these events have been kicked off with a community focus event, showcasing diabetes advocates, which is a brilliant (and necessary) addition to the HCP discussion that follows. I’m a huge fan of diaTribe, and have been for a long time, but it has been the addition of Cherise Shockley to their team as Community Manager that has seen a wonderful increase in representation of PWD in their activities. But, of course it has. Cherise is all about community and the way she has been able to weave her magic to make diaTribe even more relevant to PWD – and more representative – is what she does best. You’ll need to register for this event (it’s free) here, and it kicks off at Tuesday 11.30am ET, which is (gulp) Wednesday 1.30am AEDT.

SEPTEMBER SESSIONS

While not part of EASD, Beyond Type 1 is hosting the next in their Summer Sessions and this week it’s focusing on racial and ethnic disparities in diabetes care. There is an absolutely stellar line up in this webinar. Please do follow along if you can – this event will also be via Facebook Live over at Beyond Type 1, and is on Wednesday 8pm ET, which is Thursday 10am AEST.

DISCLOSURES

  1. I am ad advisor to the #dedoc° voices program. I do not receive any payment for this role.
  2. I am speaking at the Solvable Problems in Diabetes Community Focus Sessions. I am not receiving any payment for my involvement. I am a regular contributor to diaTribe, and I am paid for commissioned articles.
  3. I am on the Leadership Council for Beyond Type 1. I do not receive any payment for this role.

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.

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.

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