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

Every morning for the last few months, my husband has posted a Facebook update on Victoria’s COVID numbers, along with a cheery message of congrats and motivation for fellow Victorians, in particular Melburnians. 

My beautiful city has emerged from a long winter, spent very much not only indoors, but also within a 5km confine of our homes. The lockdown that saw us absolutely smash our second wave of COVID-19 was tough, but clearly necessary to regain control of numbers that were starting to look very, very scary. 

I struggled with a lot of what was going on during that time. I am so lucky that the cocoon in which I live felt safe and secure and happy, because there was a lot going on that was not like that. 

I had to stop watching the daily pressers from our Premier, not because the numbers were too overwhelming, (although the days we peaked at 700 new cases a day were tough), but rather because the media’s approach to just how present the information became too difficult to watch. 

I’d already been stressed with reporting of those of us deemed high risk. That sense that we were disposable and didn’t matter with the dismissive ‘It’s nothing unless you’re old and already sick’, was a recurring theme from the moment the pandemic started. 

But now it was more than that. It was the relentless negativity that was being thrown at the Premier and the Chief Health Officer that became unbearable. I realised that once I could recognise the voices and knew the names of the Murdoch hacks that hijacked the daily updates with their attempted gotcha-questions, that those who were meant to be reporting the news had become the news. I’m sure that’s not what journalists are meant to do. 

Our whole state was desperately trying to understand just what was going on and how safe or at risk we were, but the loudest corners of the media seemed more focused on trying to bait politicians into admitting that they are the devil. 

The same went for the way that opposition politicians who instead of being voices of support for their constituents, hampered, undermined and outright sabotaged the public health efforts that were clearly working. 

This constant stream of negativity was impacting my mental health more than any curfew, needing to wear a mask, or limit to being permitted out of the house. 

I also had to turn away and stop engaging completely with COVIDIOTS and conspiracy theorists who were outdoing each other with their stupidity. I still am incredulous that ‘anti-maskers’ is a thing. Except I’m not, because most of them are also anti-vaxers, and I’m pretty sure there is a direct correlation between the two. And so, I started using the mute function deliberately. Words, phrases and people that fed my anxieties because of their fear mongering were suddenly silent, and amazingly, I saw how much better I started to feel. 

What I realised is that it comes down to this: in times when things are difficult and overwhelming, the fuel that keeps us going is not anger and negativity. 

I am an annoyingly positive person by nature. It drives people around me nuts sometimes as I try to find the upbeat spin to pretty much everything. It wasn’t always easy during our long lockdown, but I tried. 

Those daily number updates from my husband were really not about the numbers – most mornings I’d fed him the stats because I was the one tuned to Twitter until the DHHS daily update. It was the way he was sharing the news. I turned to him one morning and said ‘You’re like a cheer squad for Victoria. It’s lovely!’ I wasn’t the only one. Many people commented on how they waited for his injection of sunshine to get their day started. 

Luckily for Aaron, he wasn’t the only person I was relying on for that positivity. On days where worries about diabetes-ing during a pandemic were creeping into my mind, I turned to friends in the diabetes community – both IRL and online. But again, I got smarter about how I did that. I completely isolated myself from whole corners of the DOC – again using mute – and found that my new curated DOC provided a source of support, entertainment and decent information. It’s amazing how much nicer one’s feed is without the passive aggressiveness and sub-tweeting that is just so common. (And yes, that last sentence could be considered an example of said shitty behaviour!)

The message group of my squad of four diabetes friends in particular lightened the load considerably, and helped talk me down from ledges of feeling scared and overwhelmed, with a mixture of reassuring messages, updates from their parts of the world, goofy animal pictures, sweary-ness and general inappropriateness, and a level of understanding that helped me breathe freely again. 

I wonder what I’ll remember in years to come when I think back to 2020. I don’t think it will be the crappy media and sabotaging politicians. I know it probably won’t be diabetes because apart from occasionally heightened anxiety about the intersection of diabetes and COVID-19, my diabetes was manageable.  

I suspect it will be the people around me – both physically and virtually – who made this dark time a little brighter. It will be my tightknit bubble of family and friends. It will be those friends who sent ridiculous memes, and made me laugh. The friends who shared pics of what they were cooking or book recommendations or how they cleverly were keeping their kids entertained while distance learning was happening. It will be the people who reached out as soon as Melbourne went into lockdown to ask how we were coping.

And so, now as there is so much more light here in Melbourne (both literally and figuratively) I’m keeping all of this close. Who knows where this pandemic will take us, or if there is a third wave coming? But if there is, perhaps I’ll feel better prepared, and know what to do.

And fresh flowers make everything better.

The OPEN Diabetes Project is currently running a survey to look at the impact of do-it-yourself artificial pancreas systems (DIYAPS) on the health and wellbeing of users. There are stories all over the DOC about how people with diabetes (and parents of kids with diabetes) have taken the leap to Loop. These stories provide wonderful anecdotal tales of just why and how this tech has helped people.

The idea behind this new survey from the OPEN Diabetes team is to continue to build evidence about the effectiveness of this technology as well as take a look into the future to see just what this tech could have in store.

And important part of this new study is that it is not only OPEN (see what I did there?) to people who are using DIYAPS. That means anyone with diabetes can participate.

This project is important on a number of levels. It was conceived by people with diabetes and a significant number of the people involved in the project team (and I am one of them) are living with diabetes. We very much live the day-to-day life of diabetes and that certainly does make a difference when thinking about research. Also critically important is the fact that the ACBRD has recently joined the OPEN Project consortium. Having a team of researchers exclusively looking at the behavioural impact of diabetes technology will offer insights that have not necessarily been previously considered in such a robust way.

All the information you need can be found by clicking on the image below – including who to speak with if you are looking for more information. Please share the link to the survey with any of your diabetes networks, healthcare professionals who can help pass on details and anyone else who may be able to help spread the word.

A reminder – this is open to everyone with diabetes – not just people using DIYAPS. (I’m stating that again because it may not be all that clear as you are reading through the material once you click through to the survey.) You do not need to be Looping or ever tried the technology. Anyone with any type of diabetes, or parents/carers of kids with diabetes can be involved.

Click on link to take survey

DISCLSOURE

I am part of the Open Diabetes Project Team.

I am, of course, concerned about privacy. In a world where pretty much everything there is to know about me is contained in a device I hold in my hand, I am well aware that there is a lot of data (diabetes and non-diabetes) available. 

Obviously, I’m not all that concerned. I have my location settings switched on all the time. I check into places I visit – or rather, used to check into places because these days those check ins would be ‘bedroom’, ‘living room’, ‘kitchen’, ‘home office’, ‘garden; and not much else. I use social media extensively, at times offering a pretty intimate picture of my day-to-day activities. I happily installed the COVIDSafe App without a second though to what that would mean in terms of being able to trace where I had visited. I have done so much online shopping in the last few months that Amazon will have a very accurate and specific profile of my buying habits and what the inside of my house looks like. I happily sign up to new apps and websites, and pretty much every non-Murdoch news outlet has my details so I can access the latest in news. I do ridiculous, mindless quizzes on Facebook, signing up to have the privilege of finding out what my birthstone says about me. 

But the thing about it is that I am happy to choose to hand over that info (and yes, I get that I have little idea which third party organisation is then given access to my data, but really, if they want to know ‘what 1970s song’ I am, they are welcome to that information). I also keep an eye on just who I have given access to, and frequently unauthorise apps and subscriptions.

Because I can do that. 

I have the same attitude when it comes to my diabetes data. My personal situation is that I don’t share my data with anyone. I don’t have anyone real time monitoring my CGM. I don’t ever give access to my data to my HCP unless there is a specific issue I need help with and then sharing data is limited and on my terms. To be honest, I haven’t had anything downloaded for a HCP in the whole three years I’ve been Looping. And yet, the medical appointments I’ve had in that time have been the most rewarding, the most satisfying and the most relevant consultations I’ve ever had. I walk out with clear ideas about what I need to do to keep going with my diabetes, and feel so satisfied that the things that I wanted to discuss have been addressed. 

I have recently done a couple of meetings where discussion has been around what is important when it comes to the development of an app or program. One meeting was referring specifically to an app that would be collecting data about day-to-day feelings of wellbeing, the other was about collecting data from a connected device. The meetings included a discussion about who would be able to see the data, and how they would be shared. 

For me, the undeniable most important thing is being able to determine who sees my data, when they see it, how they see it and why they see it. I remember a few years ago, when Cellnovo was launching in Australia, attending a workshop where the inventor of the pump was showing off the fancy data collection app and how it was set up. I was a little astonished when we were told that the default setting for data sharing was up to the HCP. It was automatically turned on, and could be turned off, but that had to be done by the HCP. There were a couple of diabetes advocates in the room that night, and none of us seemed all that impressed about that. 

When asked in these meetings what was important about the set up of these new data collection apps, the first thing I said was the PWD being in absolute control of who they share the data with. In my mind, that is a non-negotiable. 

Last week, I was surprised to hear that some of the meeting participants say that it is a condition of access to diabetes devices that downloads by HCPs are compulsory. I asked for that to be clarified, thinking perhaps I’d misheard, but no, I had heard correctly the first time.  

I have thought about this a lot over the last week. I thought about my ‘old days’ when I used to ‘forget’ to take in BG record books to avoid having to go over them with my HCP, or not have a meter with me in case I was asked for a download. This was, of course, before I realised that I didn’t need to agree to sharing the information on my device. It’s much harder in 2020 when we have our devices literally strapped to our bodies and driven by our phones to make the ‘I left it at home’ claim.

And I’ve also wondered how it is possible that in 2020, the agenda for a diabetes consultation is not being set by the PWD. It seems that data remains king to a lot of HCPs who have made the determination that access to data is not negotiable. I have been on advisory boards here in Australia and know that there is no way that this sort of thing would fly as national policy. Some centres may insist that data be downloaded, but PWD could still push back if they were comfortable doing so. (For the record, there should be no need to do that. Permission should be asked each and every time access to data is requested, and consent should be granted for it to happen. This also refers to the idea of having to be weighed at all appointments as matter of course.)

Obviously, in the true spirit of YDMV, there is no one way to do this and if people are happy to share their data, and for their HCP to have access to it, then brilliant! But that actually isn’t the point of today’s post. It’s not about deciding that you are okay with it. It is about not having a say. It’s about the idea that HCPs consider themselves the gatekeepers of MY data, or that they have a right to it. To me, I don’t think that is okay at all.

Postscript

This post is referring to adults, but if you want to read about my unpopular posts about kids consenting to sharing their data as they get older, try here or here

Yesterday, I gave a talk about language and stigma, and one of the questions I was asked focused on stigma within the diabetes community. I’ve had this post sitting in my ‘unpublished’ folder for months now, and decided that today was the day to publish it. I’m dedicating it to all my friends with type 2 diabetes.

There is a photo of me from 2011. I am standing in my office at work, wearing a bright red t-shirt. I’m staring at the camera, my eyebrows raised, a smirk on my face. My fingers are pointing to the words printed across the front of the t-shirt: Type 1 diabetes. The real diabetes. 

At the time, I was running a program that was exclusively about developing and running programs and activities for people with type 1 diabetes. It remains one of the things I’m most proud about in my career, because at the time, what was available to people living with or affected by type 1 diabetes was really, really limited.

At its peak, our program ran over 20 events across the state in both the city and rural areas, including diabetes technology expos that featured all the latest and greatest in Dtech; a diabetes and pregnancy program; we published a monthly type 1 diabetes-specific e-newsletter; established a program of peer support groups for people affected by type 1 diabetes; and also included in the program were camps for kids with diabetes. We put type 1 diabetes on the map as a program area that needed special attention, resources, funding and acknowledgement. The program was entirely ‘user-led’ meaning that everything we did came from feedback from the community, and many of us in the team were living with diabetes ourselves. Many of the things I see these days in the diabetes community are activities we first did fifteen years ago.

On top of the community engagement and events we were doing, the type 1 focus meant that we were now demanding attention in the policy and advocacy space. The specific needs that were relevant to people with type 1 diabetes were being discussed separately, and that yielded some impressive results – improvements to and extension of the Carer Allowance for parents of kids with type 1 diabetes; funding of pump consumables on the NDSS; pathways to funding of digital technology solutions being on everyone’s radar. We had (and continue to have) wins because of this attention to type 1 diabetes. We started doing this eighteen years ago and are still pushing the agenda.

I have no qualms about the program we started being an exclusively type 1 diabetes program. At the time, the organisation was already doing lots for people with type 2, and my work was addressing a gap in our programs and services. I was employed as a response to feedback from people with type 1 diabetes who felt that the services offered where not relevant to them. So, by working closely with the community, we built something from the ground up that provided people with type 1 diabetes what they wanted.

When the photo I described at the opening of this post was taken, my head was exclusively working on type 1 diabetes activities. I thought the shirt was cute and fun, and that I looked cute and fun wearing it. And I knew that so many of the people with type 1 diabetes that I was working alongside would love it too. The response when I shared the photo on Facebook proved me right. I know how to play to an audience!

Today, I am horribly ashamed and embarrassed that I wore this shirt with such glee, and the attitude that I held towards people with type 2 diabetes. Because while I saw the t-shirt as a just a bit of fun, the truth underlying it was that I did believe that type 1 diabetes was the more serious, the more important, the more misunderstood, the more maligned, the more worthy condition. After all, we couldn’t have done anything to stop our diabetes, could we? We were completely blameless. How horrible I feel today even typing those words.

I deleted the photo from my Facebook a number of years ago, but I still have it saved. Any  time I stumble across it, I feel a rush of shame. I was going to share it with this post, but a wise friend counselled me against that idea, saying that it was likely that somehow it could be used out of context and against me. It will remain hidden for now, bundled up with that shame and disgust I rightfully feel when I see it.

So, when did things change for me?

Of course, it was when I started listening to people with type 2 diabetes. It was hearing about their challenges and the constant stigma they felt. It was hearing how they felt when they were misrepresented in the media, or by others who knew little about type 2. That was when I realised how hurtful the narrative surrounding type 2 diabetes was for many of the people actually living with it.

I’m ashamed to say that harmful narrative that I actually contributed to. I certainly hadn’t always behaved with intent, but some of the time – such as when wearing clothing that suggested that I had the ‘real’ type of diabetes – was deliberate. Calculated or not, my complete lack of knowledge about type 2 diabetes, and the challenges faced by those living with it, meant that I was very often stigmatising.

I knew I needed to change what I was saying. Whilst I still believed in the absolute philosophy of the program I was leading, and the necessity of it having a type 1 focus, I understood that I needed to reframe the way I spoke. And I needed to be accountable to what was going on around me in discussions about all types of diabetes. The commitment I had to calling out misinformation about type 1 diabetes could no longer be at the expense of type 2 diabetes.

I have said this a million times – no one has to advocate for any cause they don’t want to. No one has to take on something that they don’t have the time, energy or inclination to focus on. No one has to be an advocate for all types of diabetes. There are some absolutely brilliant people who hone their energies on issues surrounding only one type of diabetes because that is what they know and what they are passionate about, and all the power to them – especially when they do that by elevating their cause BUT NOT diminishing others.

For me, my focus is on a number of different things and some of them actually do remain specific to type 1 diabetes. Some span all types of diabetes. The difference these days is the way that I do it.

I am sorry to all my friends with type 2 diabetes who I misunderstood, misrepresented and stigmatised. I have no excuse for my behaviour, but I do own it. And I promise I will keep calling out anything that I see contributing to the narrative that I once was part of.

Postscript

I’m writing the next bit in bold, because a while ago I published a post suggesting that when correcting stigmatising comments in the media, we don’t necessarily need to specify type of diabetes, and it was somehow misconstrued to mean things that I did not actually say. The things in bold below? There are dozens of examples of me stating these exact things through my blog, talks I’ve given, other articles I have written. But here they are in one little place just so my position is super-dooper clear.

  • Of course, we need to know what type of diabetes we are living with. We have a right to know and understand our own body and what’s going on with it, and the implications of our type of diabetes. For example, autoimmune diabetes comes with a whole heap of other considerations such as AI clustering and what that can mean to other family members.
  • Of course, we can and should feel free to say ‘I have type x diabetes’ if we want to. We can identify and talk about our own diabetes any way we want to. No one has the right to tell us otherwise. (Now I want to have ‘type x diabetes’ because that sounds all cool and mysterious and as though it could be the starting point of a disaster movie about world domination.)
  • Of course, there are some groups of people who really do need to fully, completely, utterly, absolutely understand the different types of diabetes and what they mean. For example – HCPs should know, policy makers should understand (to name just a couple of groups).
  • Of course, we should know the best management on offer for our own type of diabetes and be clear about what we are doing/using ourselves.
  • Of course, we should know that people diagnosed with type 1 diabetes need insulin and there is no other choice.
  • Of course, we should look at outcomes for all types of diabetes and see what measures need to be taken to improve them – and those measures will most likely be different for different types of diabetes.

Over the weekend, an embargoed press release arrived in my inbox with a few different pieces of research that would be presented in coming days at EASD.

Being registered as press for diabetes conferences means getting an advance peek into some of the big stories that are likely to generate a lot of interest and discussion. This email offered three or four pieces of research, but it was the first one listed in the subject heading that made me catch my breath and hesitate on the button to read the email beyond the header,

Shorter. Life. Expectancy.

The three words ran through my mind over and over before I steeled myself enough to open the email and read the release, then the abstract and finally the full article. As confronting as the email header was, there was nothing in there that I didn’t expect, and nothing really that surprised me. It’s not new news. I remember being told early into my diagnosis that I could expect to live 15 years less because of diabetes; something I casually announced to my sister one night when we were out for dinner. Through tears, she made me promise to never say that again, and I just hope she’s not reading this right now.

But even though there was nothing in there that made me feel especially concerned, I did bristle at the conclusion of the article, in particular this:

‘Linking poor glycaemic control to expected mortality … may incentivise … people with diabetes and poor control to increase their efforts to achieve targets.’

I’m ignoring the language here, because even more problematic than the specific words in here is the sentiment which I read as ‘scare people and threaten them with early death to try harder’. Unsurprisingly, I find that horrendous. Equally horrendous is the assumption that people are not already trying as hard as they possibly can. It’s not possible to increase efforts if someone is already putting in the maximum.

Over the last twenty-two years, my diabetes management has sat at pretty much every single data point along the ‘glycaemic control’ spectrum, from A1Cs in the 4s and 5s all the way up to the mid-teens. There is no way that being told that I was going to die earlier would have made me pull up my socks to do better. In fact, it’s likely that if anyone had, at any point (but especially when I was sitting way above target), told me that I was sending myself to an early grave, all that would have done was send me further into the depressive burnout hole I was already cowering in.

It’s tough going knowing that the health condition that I’m doing everything in my power to manage as best as I possibly can is going to contribute to cutting my life short; that despite those efforts, I am likely to see fewer years of my daughter’s life and be outlived by most of my friends. Placing any of the blame for that on me for that makes me feel even worse.

I’m not here to argue with the article – it was an analysis of an audit of data out of England. I’m not here to say that this sort of information shouldn’t be shared, because of course it should be. Understanding outcomes, what drives them, interventions that can help and any other factor that provides better results for people with diabetes is a brilliant thing. These sorts of results could be used to highlight when and how to intensify and prioritise treatment options.

I do, however, question the way that the information will be used. Also, from the article:

‘Communication of life years lost from now to patients at the time of consultation with healthcare professionals and through messages publicised by advocacy groups … and … national/international patient facing organisations will be of great help in terms of disseminations of the conclusions of this study.’

I would be really dismayed if I saw any diabetes organisation using this information in a comms campaign, as I fear it could add concern and trauma to people living with diabetes. I worry about how it could be interpreted by well-meaning loved ones to say, ‘If you don’t start looking after yourself, you’re going to die,’ or something similar.

For the record, one of the other studies highlighted in the email was about hot baths and diabetes. The lowdown on that is having regular hot baths may improve cardiovascular risk factors in people with type 2 diabetes. I’m going to do an n=1 study to see if that also helps people with diabetes.

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.

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!)

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