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It’s hot in Melbourne today and it’s going to get warmer over the next few days. I’m loving the bone-warming sun that just makes everything look so sparkly and bright. So, I’m spending as much time as possible soaking up the rays (and adding to the ridiculous tan mark around my Dex), because the cooler weather will be here before I know it. I’m trying to build up those vitamin D stores to last me for when winter hits here and I’m reliant on quick trips to the northern hemisphere for work to see the sunshine and warmer temperatures.

Anyway, diabetes doesn’t take a break over the summer. Or winter. Which means, there is always lots to read and see about it. Here are some of the things I’m catching up on now.

Hospital life in pictures

This piece from the guardian will break your heart. Explained pictorially, it’s easy to see that the medical system is broken, medical education is broken, hospitals can be incredibly cold and anxiety inducing places, doctors are at breaking point. And patients in the system are left to deal with the fallout from the disarray.

IDF comps

The International Diabetes Federation is working to reduce the stigma association with diabetes-related complications, with a focus on how the language used can make people feel judged and stigmatised. Last year, they launched the #DiabetesComplicationsTalk Facebook page, encouraging people with diabetes to share stories and support each other.

It’s really great to see the IDF in the #LanguageMatters space, encouraging people to openly speak about diabetes-related complications to help reduce the stigma associated with them. More here.

Diabetes Voice

Still on news from the IDF, the organisation’s quarterly magazine is now available electronically. The first edition is an absolute cracker. Start with this incredibly powerful piece from editor, Elizabeth Snouffer, about diabetes-related stigma. Read it. Share it.

Patient Revolution

If you’ve not checked out the Patient Revolution website, now is a great time to have a look.

Start with this page, which is a library of stories you can click through, finding any specific topics that you are interested in.

Also, there is a Patient Revolution chat which uses the hashtag #WhyWeRevolt. To keep up to date with their chats, and to take part, follow @PatientRev on Twitter.

1,200 mason jars

Do you ever find yourself in the midst of a Twitter thread, wishing, in equal measure, that you hadn’t started, but can’t get enough of it? Sometimes these threads are diabetes-related; sometimes they’re not. Go here for one that is definitely not.

I have spent far too much time in the last week invested in this bizarre tale. There is a lot to take away from the whole saga – maybe starting with: don’t pay USD$169 to hear someone ‘teach’ you how to ‘be you’. And there are a lot of unanswered questions, such as what the hell is going to happen to the mason jars.

Happy reading. (You may need a drink …)

Diabetes in the US

I will never understand the US health system. My head and heart hurt as I hear the struggles of friends with diabetes, and the difficulties they have accessing insulin, and diabetes tech and supplies.

This piece from the New York Times talks about non-medical switching, where insurance companies decide which drugs (and devices) they will cover and subsidise. In Australia, the government decides which drugs will be listed on the PBS (Pharmaceutical Benefits Scheme). If a drug is on there, it is the same price for everyone who has a prescription. There are some drugs that require a special prescription to be provided at the subsidised price. But there is no extra negotiating or pleading, or any involvement, with insurance companies.

In a system that is broken beyond measure, this seems like one more roadblock to make just surviving with a condition such as diabetes impossible.

Going beyond

Beyond Type 1 has grown to include a new platform for people with type 2 diabetes. Check it out!

Real life Loop stories

The team at diaTribe has a new series of personal stories of people who have been using DIYAPS solutions. Adam Brown’s story was first, and Kelly Close has now offered her experiences. Such a great idea to get a number of different insights into what has worked, what hasn’t and hopes for the future of DIYAPS.

Sharing and caring

Also from diaTribe, this great piece from Kerri Sparling which provides her own and others’ perspectives on sharing of CGM data. There is no one way to share data – it is personal, individual and can change over time, depending on circumstances. Some choose to; others don’t. I love this piece because it is balanced and offers some interesting thoughts.

Ascensia and CGM

More tech choices for people with diabetes is always great to hear, so Ascensia’s recent announcement of their move into the CGM market has been met with enthusiasm from the community. Read their release here and Diabetes Mine’s take on the announcement here.

SoMe at conferences

I believe social media engagement and use at all health conferences is a critical and necessary part of any communication strategy. There is no better, easier or more effective way to share details of the conference that by encouraging the people attending to broadcast using their own social media networks.

This article explores that, referencing the ridiculous photo ban at ADA in 2017 (which thankfully was changed in 2018).

Menopause and T1D blog

Sarah Gatward is a blogger from the UK and she is writing a series sharing her experiences of living type 1 diabetes and going through menopause. Yes! And thank you, Sarah. Start here.

NDSS reminder

Now is a good a time as any to make sure your NDSS details are up to date. Remember – the NDSS is not just about subsidised diabetes supplies. It also provides information and support for people affected by diabetes.

Go here to make sure your registration details are correct.

Bin the fax

All my dreams came true when I read this article in the Limbic today! Finally calls to get rid of the archaic fax machine in health care. Halle-bloody-lujah!

 

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Well, it’s been a year. It’s always the same. Come December, and as Mariah is blaring in every store I walk into, I start to feel exhaustion. But it’s not all bad news. Holidays loom ahead. Sunny weather means more time outdoors. And long, warm nights out with friends and family seem like the perfect way to spend my time away from work. Oh, and perhaps most excitedly, my mother is going to make her famous zippoli – my favourite Italian Xmas food.

The happiest time of the year is when mum serves up zippoli. What a time to celebrate being from an Italian family!

The diabetes world remains comfortingly – and frustratingly – static at times. There are constants that shape each year, but there are also changes. Some are positive, some lead me to wonder just who is making decisions that impact on PWD and why do they seem so far removed from the realities of living with this condition?

I’m ready to draw a line under 2018 – a bold, thick, solid line – farewelling the year with the knowledge that there will always be some things about diabetes I know to be true.

Diabetes is hard. The relentlessness of it doesn’t really subside. As much as we have tools to try to make things easier, it permeates, something I realised back in July when the wind was knocked out of me as diabetes unleashed itself into every part of me, taking hold and trying to pull me under.

There is no silver bullet. Loop does seem magical to me, but my diabetes is still there. It is just here in a different way – a new normal.

The inequalities of diabetes continue to be an important theme throughout our community and we can’t turn our backs to the fact that access to the most basic of diabetes medications and treatments remains out of reach to many. There is no one way to advocate for change, and I commend everyone working at the front line to improve the situation.

Which brings me to the point where I remind everyone that it is absolutely not too late to make a donation – however small or large – to Life for a Child. Saving the life of a young person at Xmas time seems like an absolute no-brainer to me.

Peer support remains a cornerstone of my diabetes management toolkit. Of course the shape of that support changes – I’ve met some incredible new people this year and been involved in some remarkable projects. At the same time, there have been some important collaborations with diabetes friends I’ve known for some time. It’s those diabetes friends that continue to help me make sense of my own diabetes, make me realise that my village is global, and know that wherever I turn, someone will have my back. I can’t explain just how reassuring that is.

Despite feeling that there have been times that the community has been splintered and a little disjointed, I still believe that the diabetes community is something positive. I also know that it can take time to find your tribe in there, and accept that not everyone has to be best buddies. But when you do find those people who you just click with (and that doesn’t mean agreeing on everything, by the way) you do everything you can to hold on to them, because that’s where the magic of working with peers happens.

While co-design seems to have become a bit of a buzz phrase, there are some examples of it that just make diabetes activities and projects so much better! This year, I’ve had some incredible opportunities to work on projects with a vast array of stakeholders and what can be achieved is incredible.

Sometimes, (a lot of the time?) we need humour in diabetes. And sweary birds. Finding Effin’ Birds earlier this year was a source of such joy and happiness, especially as I realised that (unintentionally) the clever folk behind it have made it all about living with diabetes. I cannot tell you how many moments I have come across one of their pics on my social media feeds and it has perfectly nailed my diabetes mood.

We can’t be afraid to have conversations that can be considered difficult. This was the foundation of the Australian Diabetes Social Media Summit this year, but it went far beyond that. Women, diabetes  and sexual health remains an issue that needs a lot more attention. And we need to keep talking about mental health and diabetes.

Language matters. Whatever people believe, the way we speak – and think – about diabetes has far reaching effects. It affects everything from the treatment we receive, the public’s perception of diabetes, where fundraising dollars are allocated and how governments fund diabetes.

And so, I think it is fitting that I round out the year and this post with one of the things I am so proud and honoured to have been involved in. It is one of the best examples of co-design; it involves diabetes peers, it acknowledges that diabetes can be a difficult monster to live with, and it holds people with diabetes up. Oh – and it reminds us that absolutely, completely, utterly, #LanguageMatters.

I’m taking a little break from Diabetogenic to do … well… to do nothing. That’s what I have ahead of me for the next three or so weeks. No plane travel, no speaking engagements, no media, no dealing with the diabetes things that get me down. Except, of course, my own diabetes thing. But I asked Santa for a pleasant few weeks of diabetes being kind to me. I’m sure that’s what I’ll be getting under the tree. As long has he can work out how to wrap it. 

I hope that everyone has a lovely festive season. I do know for many it is a really difficult time of the year. Thank you to everyone for reading and sharing and commenting. I’ll be back some time in January. Ready to go again, and to rant and rave, celebrate, and shamelessly talk about what’s going on in my diabetes world. I hope to see you then. 

It’s Research Wednesday again. Still not a thing, although Jane Speight from the @ACBRD disagreed with me after I said that last time, so maybe it is a thing?

Anyway, here are a few research studies you may be interested in getting involved in. Remember, participating in research is a great way to help contribute to and shape diabetes care, as well as provide insights that only those of us living with (or around) diabetes truly can. Please do consider getting involved if you can.

Women Loopers in Australia – we need you!

The Australian Centre for Behavioural Research in Diabetes is currently recruiting women for a research project on DIYAPS.

This one has been open for a while and for some reason lots of blokes have participated, but we need some women to get involved. Women are a truly significant part of the DIY world. I know that when I want information about DIYAPS, the first person I look to is Dana Lewis. And for Loop specific info, Katie DiSimone. I also know that there are a lot of women loopers in Australia. And we need you!

So – if you are female, living in Australia, aged 18 years or over, have had type 1 diabetes for at least a year, and using Loop, OpenAPS or AndroidAPS , please consider getting involved. This study involves a phone interview which will take 45 to 60 minutes, and you’ll be asked about your looping views and experiences.

CLICK HERE TO CONTACT THE PROJECT MANAGER FOR FURTHER INFORMATION

(Disclosure: I’m involved in this study.)

Loopers everywhere – we need you!

The OPEN project is a collaboration of international patient innovators, clinicians, social and computer scientists and advocacy organisation investigating DIYAPS. The first piece of work from this consortium is called DIWHY (get it?) which is looking to provide a better understanding of the reasons that people with diabetes decide to take the DIYAPS road, as well as examine barriers and motivators to building and using these systems.

You can participate in DIWHY by taking the online survey which is open to adults with diabetes as well as parents/carers of children with diabetes. The survey is available in English and German.

CLICK HERE TO FIND OUT MORE AND DO THE SURVEY

(Disclosure: I’m involved in this one too…)

Social media and diabetes care

Jacqueline, from the University of Hamburg, is currently looking for people to complete an online survey to help with her Masters thesis. She is looking at the importance and use of social media in diabetes.

The survey is anonymous and will take you about ten minutes to complete.

CLICK HERE TO TAKE THE SURVEY

Still open – new mums with diabetes

Women with type 1, type 2 or gestational diabetes who are either pregnant or have been pregnant in the last year are still needed for a survey from the NHMRC Clinical Trials Centre at Sydney Medical School (from the University of Sydney).

This is a twenty minute survey and the aim of the research is to better understand the glucose monitoring preferences and experiences of women with diabetes during (or planning for) pregnancy.

CLICK HERE TO TAKE THE SURVEY

I really couldn’t find a better title for this post. Other ideas were a bit sweary, so I’m going with this, because that is the sound I seem to be making with increasing frequency when I look at online encounters.

I probably should acknowledge that it’s mid-December. I’m tired and a little grouchy and so is everyone else. I am ready for a holiday and to be away from the daily grind. I need quiet, and some downtime, and a break from the crap that a lot of the time I’d barely notice, but now seems amplified and awful. I know I’m not the only one.

But even with that caveat, this year, more than any other, I have found myself needing to deliberately and consciously switch off from the diabetes online world.

Two occasions stand out for me. The first was back over the Easter period when Dexcom UK and Ireland dared to suggest people with diabetes post a selfie with an Easter egg. That sent the low-carb community into a frenzy because obviously daring to take a photo with an Easter egg (which, incidentally, no one said had to be made of chocolate), was the same as committing some sort of crime against humanity. The fact that each photo was attracting a £10donation to Life for a Child was completely lost in the carb-deprived anger.

And the second was during ADA when some in the community once again jumped on the outrage bandwagon for, as it turned out, no good reason.

These have not been isolated incidents, and the latest explosion happened on the Diabetes Australia Facebook page just the other day. (So, by way of disclosure, I work for Diabetes Australia, but I don’t have anything to do with the daily running of any of our social platforms, In fact, I don’t even have the passwords to most of them.)

What happened? Well, last week one of the team shared an article from Diabetes Daily about Xmas gifting for friends and family with diabetes. I read the article. It wasn’t the first or only piece I’d read recently about diabetes-related giving, but this was the one that was shared.

Anyway, apparently this article is hugely insulting and offensive. Yeah, I know. I had trouble joining the dots too, but some people really, really took offense to the idea that a gift with a diabetes focus should even be considered.

The comments after the article were quite nasty, including horrid remarks to and about the author. This is completely and utterly uncalled for. The writer is a person – a person with diabetes as it turns out. One of our own. Yet the comments about, and to, her were awful.

If I’m honest, I don’t really want a pair of ‘diabetic socks’, in exactly the same way, I don’t want the gift of a Michael Bublé Xmas album. But you don’t see me ranting and raving and yelling at the staff in JB HiFi because, apparently, they think that’s what a woman in her forties wants for Xmas.

You know what? If you don’t like the idea of giving or receiving a diabetes-themed gift (or Michael Bublé), don’t do it. Melinda Seed wrote a great piece last year about why she thinks it’s a bad idea and offered some suggestions that, quite frankly, I’d be happy to find under the tree on Xmas morning. Her piece is not aggressive, it’s not mean spirited. It’s her well-considered viewpoint on why she wouldn’t really appreciate being given a ‘diabetic cookbook’. (Oh, and she managed to get the words weird-arse and diarrhoea in one sentence, which made me laugh out loud. Probably more than Mel intended.)

This sort of commentary is great because it provides a different perspective, once again showing that we don’t all have to agree to get along. But when the response is aggression and nastiness and rudeness, all that does is divide the community.

I feel that there has been quite a bit of that this year. I do know that it’s always been there to a degree. But this year? This year it seems to have been taken up a level. Maybe I’m just tuned into it more. Maybe I’m just over it more. Maybe my resilience around this kind of stuff just isn’t what it used to be.

So, for the sake of my sanity, the ‘block’ function has had more of a run this year than ever before. And, I’ve discovered and made a lot of use of the mute button. Not seeing negativity or aggression, or people who seem to just want to complain, constantly coming up in my stream is refreshing.

But the best thing I do when I see something that isn’t necessarily aligned with my diabetes philosophy? I scroll on by. That’s the only action necessary. Scroll on by.

I am en route back home from a flying visit to Copenhagen. I was invited by Novo Nordisk to moderate the first ever DEEPtalk event. (Please read my disclosures at the end of this post.)

I will write all about the event in detail, but in the meantime, here’s a video of the livestream, where you can see and hear nine fantastic speakers share how they manage diabetes specific challenges are found food and mealtimes. And see and hear me bumbling my way through.

DISCLOSURE

The DEEPtalk event was hosted by Novo Nordisk and was held at one of their facilities in Copenhagen. I was invited by the Global Patient Relations Team to moderate the event. Novo covered costs for my (premium economy) flights (I used my own frequent flyer miles to upgrade flights) and two nights’ accommodation as well as transfers and meals while I was in Copenhagen. There is no expectation from the Global Patient Relations Team (or Novo Nordisk more broadly) that I will write about the event or other activities held while I was in Copenhagen and what I do write is mine. All mine. 

This year for World Diabetes Day, the International Diabetes Federation has decided on the theme ‘Diabetes Concerns Every Family’. According to the WDD website, the aim of the campaign is ‘…is to raise awareness of the impact that diabetes has on the family and to promote the role of the family in the management, care, prevention and education of the condition.’

I get that. I have said it on numerous occasions: it takes a village to live with diabetes.

I was a little nervous when I first saw some of the materials from the campaign, because I was worried that it may focus too much on the negative effects of diabetes and how it burdens the families of those living with diabetes. I know how diabetes impacts my family and I feel enormous responsibility already about that. I don’t need to be reminded of it, and I certainly don’t need to be guilted into being told that if I am not managing my diabetes properly I am doing a disservice to my family.

Although there have been a few little things that hint at those ideas, mostly, what I’ve seen has been positive and focused on celebrating and acknowledging those villagers who help us live with diabetes.

Diabetes Australia has decided on the campaign of #MyDiabetesFamily to highlight the idea of the village, and acknowledge that ‘family’ looks different to a lot of people.  For some people with diabetes, it will be their immediate family – parents, partners, kids etc – who are their main cheer-squad and supporters; for others it will be their friends, work colleagues or maybe gym partner. Someone the other day told me that their dog is their most important diabetes supporter, providing them with comfort – and alerting them to lows.

I was asked to put together a collage of the people who I would refer to as #MyDiabetesFamily. This is it:

#MyDiabetesFamily

Obviously, and most importantly, Aaron and the kidlet feature. They know my diabetes in a way that no one else does because they see it most. They see the difficult days, the frustrations and how overwhelmed I can get, but they also see my celebrate the positives. And they have seen how much my diabetes – and my attitude to it – has changed in the last 12 months. In some ways, they benefit from Loop, too because my diabetes intrudes a lot less into our family’s life.

My parents and my sister are on there too – another obvious inclusion. Their support is never ending.

My gratitude for my family – in the more traditional sense of the word – is unending. They may not have diabetes, but they deal with it in different ways. While they may not understand that feeling of unquenchable thirst that comes from high glucose levels, or the panic of an ‘eat the kitchen’ low, they do know what it is like to be spectator to it all and I know that they all wish that I didn’t have to deal with those things – and everything else diabetes has to offer.

And the photo at the top shows just some of my friends with diabetes. As it turns out, this was the first photo on my phone with a group of diabetes friends, and these fab people are just a tiny number who also make up #MyDiabetesFamily; I am lucky to say that there are so, so many more.

These are the people whose islet cells are as absent as my own; these are the people who ‘get it’; these are the people who intrinsically understand what diabetes feels like – even if each of us have different experiences, and we use different words to explain it, and come from and with different perspectives. These are the ‘us’ in #NothingAboutUsWithoutUs; they are the ‘tribe’ in ‘Find your tribe, and love them hard’.

And in the middle? Well, that would be me. Because I am the one who is so grateful to have them all there as part of my life, helping and supporting me.

Want to get involved and celebrate your own diabetes family?

Have a look at the Diabetes Australia Facebook page (click on the image below to be taken there) to find out how.

DISCLOSURE (because they matter and I always disclose. ALWAYS.)

I work at Diabetes Australia, and had some involvement in the development of this campaign. I am writing about the campaign because I think it is a truly important one – not because I was asked to by any Diabetes Australia staff. Plus – I’ll take any opportunity to highlight the folks who make living with diabetes easier!

Trending on Twitter at the moment is a hashtag that is getting a lot of attention (obviously: it’s trending).

The hashtag is #DoctorsAreDickheads.

Has it got people’s attention? Yep.

Is it inflammatory? You bet.

And it needs to be.

The shitty thing is that sometimes it takes a loud, brash moment like this for people to sit up and listen. Lousy experiences in healthcare are not isolated experiences. Not being listened to; not being believed; being dismissed; being belittled; experiencing doctor bias – these are all real. These happen frequently.

In diabetes, we hear this from the point of (mis)diagnosis right through to people who have lived with diabetes for decades. How many people were sent away from the doctor being told their symptoms where nothing? How many parents were told they were over-reacting when they repeatedly took their thirsty, constantly peeing, losing weight child to the GP? How many of us are blamed instead of helped when we start to develop complications?  Almost every single person with diabetes I have spoken has a terrible tale to share.

Hashtags like this, which often then become ‘movements’, come about for one simple reason: people are hurting and need to be heard. They don’t happen because an individual has a grudge directed at one other person. They happen, and become magnified, because there is clearly a systematic issue somewhere. One single person may start the discussion, but others see their own experiences reflected in what others are saying and join in the discussion.

Also, hashtags like this don’t happen as a first line of attack. Often, people have tried every other angle: they have tried to reason, asked to be heard, searched for someone they hope will be more sympathetic, used the system in place – the system that is meant to protect them, followed protocols for making complaints when things go wrong, written quiet pieces on their own blogs or in closed community groups in a hope that someone – anyone – will listen. They have tried being polite, quiet, compliant.

Yet they don’t feel heard.

Unsurprisingly, there have been parallels drawn between #DoctorsAreDickheads and #MeToo and #BlackLivesMatter. And in exactly as the response to #MeToo became #NotAllMen, and #BlackLivesMatter became #AllLivesMatter, predictably we are seeing #NotAllDoctors.

Suddenly the reason behind the discussion is hijacked. Doctors become defensive; others jump to their defence. And the stories of those who have been hurt, who continue to be hurt, who have sometimes had their lives turned on their head, start to get lost.

The right response to this hashtag is to listen. It is not to turn it around and defend yourself or start to attack those who are sharing their personal stories. It is not to be self-justifying. It is not protect your own interests. It is not to accuse the people sharing their stories as being aggressive, nasty, offensive, attention-seeking or confrontational.

It is to stay silent and listen. It’s to let the discomfort wash over you, surround you, move in and almost suffocate you while you remain quiet and listen.

Listen to the people who have had these horrible experiences. Recognise there is a power imbalance between medical care givers and receivers. Understand how vulnerable some people are when they are sharing their stories – and how vulnerable they were when they were let down by their doctors. And accept that the anger on show is completely and utterly understandable.

Personally, I have had some horrid experiences with doctors. Of course I’ve had some incredibly positive and empowering experiences. I have nothing but the highest regard for my own healthcare team and so many of the HCPs I am lucky to work with as part of my job. I named my kid after my endo because I honestly think that her care and expertise and compassion are part of the reason that I have an amazing teenager accompanying me in my life these days. But this isn’t about celebrating those moments.

It’s about the ones that left me feeling hopeless.

Some I’ve documented on my blog, others I feel I am still too traumatised to talk about. I have felt belittled, delegitimised, stigmatised and made to feel like a fool, a hypochondriac, a trouble maker, an attention seeker by doctors in the past. And I am a confident, educated, Bolshy advocate who understands the system. Imagine for a moment those who don’t, because we’re not hearing from them. Yet.

For every single person using the #DoctorsAreDickheads hashtag on twitter as they share their experience, there are dozens who are not doing that. It is not a loud minority who are being rabble-rousers. What we have seen in the last day or so is just the start.

Could it have been more nuanced? Maybe. Someone suggested that a better option would have been #DoctorsBeBetter, but I guarantee that those who are up in arms about this hashtag would still be crying #NotAllDoctors even if there wasn’t the profanity contained within the current hashtag.

And finally, I have a plea here. Please, do not invoke the #LanguageMatters movement as part of this discussion. Language matters – at least the way that I see it and have been working at for almost a decade now – is about ensuring that the language used when speaking to and about people with diabetes empowers and supports us.

If we want to add a language focus to this discussion it’s this: stop policing the language that ‘patients’ use. In the same way it’s not up to healthcare professionals to tell people with diabetes the language to use when speaking about our own diabetes, it is not for the medical community to tell the ‘patient’ community to tone it down or use different words when we are telling our own stories. We will use the words that resonate with us, within us, amongst us. Because these are our stories. And it’s time, and we deserve, for them – for us – to be heard.

#DOCDAY is now as much of the EASD program as other satellite events. While you may not see me limbering up at the start line of the EASD5K, you certainly will see me prepping for #DOCDAY!

The first #DOCDAY event was back in 2015 in Stockholm when diabetes advocate extraordinaire, Bastian Hauck, hired a small, overheated room in the back of a downtown café, with plans to house some diabetes bloggers and advocates who would be at EASD, providing us with the opportunity to share some of the things we have been up to in diabetes advocacy. The promise of coffee and cinnamon buns was more than enough to see the room fill to capacity before the event started.

My, how the event has grown! The following year in Munich, Bastian had the brilliant idea of moving #DOCDAY to the conference centre and inviting HCPs, researchers and industry to attend. The event was still very much an opportunity for PWD to share our work, but it made sense that we weren’t simply talking to each other. The echo chamber of diabetes can be vast sometimes!

Bastian has asked me to speak at each #DOCDAY event. I’m yet to work out whether it’s because he’s desperate for presenters, or if he just wants me up there so people can giggle at my odd accent and unintentional (yet frighteningly frequent) ‘Australian-isms’, that make sense to no one other than me and the very limited number of Aussie HCPs who are in the room. (Thank you to the couple of Aussie endos who came along this year and some other folks from the Diabetes Australia family!)

There was a very strong focus this year on DIY technologies. Dr Katarina Braune – fellow looper and paediatric endocrinologist – spoke about some incredible grass roots initiatives involving sharing information and expertise about DIY systems among the diabetes community in Germany. Katarina is a force to be reckoned with – dynamic, passionate, smart (so smart!) and committed to ensuring that people who want to come on board the DIY train are supported to do so.

Dr Shane O’Donnell, postdoc research fellow from University College Dublin, spoke about a new project called OPEN which is an international collaboration of PWD, HCPs, social and computer scientists and diabetes advocacy groups. (Disclosure: I’m involved in this work.) We’re hoping to investigate and establish an evidence-base around the impact of DIY systems on PWD and the broader healthcare world.

And I spoke about the recently released Diabetes Australia DIYAPS position statement.

It’s clear that this is a hot topic amongst some advocates. But the message remains clear – this is not about converting everyone onto a DIY system. It’s about ensuring those who chose that path are supported, a point I was at pains to hammer across:

(Click for original tweet)

The great thing about DOCDAY is that it is totally informal. There is no real agenda. Bastian likes to have a couple of people lined up to kick off proceedings, and say a few words, but the floor is open to anyone who has anything relevant to share.

Mandy Marquardt, Team Novo Nordisk cycling champ, spoke about her Olympic plans and how she’s clearly not letting type 1 diabetes standing in the way of achieving her dreams.

And Amin from MedAngel spoke about the importance of knowing that our insulin is being stored correctly, and about a poster presented at EASD which showed that a lot of the time, our fridges at home are not keeping insulin within the manufacturer-recommended temperature range, which means that insulin quality and potency may be compromised. More about that here.

(Also – great time for those of us down under to think about ordering a MedAngel as the weather starting to heat up. Do yourself a favour – and give yourself some peace of mind – by knowing your insulin is not being cooked or frozen. For Australians, order here.)

Some new initiatives I heard about this year include:

Diatravellers: a brilliant idea of using social platforms to connect travellers with diabetes to interact, share information and promote activities (such as events and peer group meetings). It’s early days yet, but keep an eye on their website as more information comes to hand.

The awesome Steffi from Pep Me Up (where you can buy very cool stickers for your Libre sensor, temporary tattoos and my choice of medic alert bracelets), is working with the community to develop a new code of ethics for diabetes bloggers. Another ‘watch this space’ idea which is just getting started.

And, Weronika Kowalska spoke about ConnecT1on Campaign, her new project for the European Patients Forum Program for Young Patient Advocates which will feature type 1 diabetes advocates connecting with people from all over the world. This is an awareness raising initiative and you can follow along on Instagram.

One of my main criticisms of EASD is that there is such limited ‘patient’ involvement in the actual scientific program, which is frustrating considering that there is a huge contingent of bloggers and advocates in attendance (thanks to Roche Diabetes Care organising for us to have access all areas media passes as part of our involvement in their #DiabetesMeetUp event). This is why #DOCDAY is so important. It gives us an opportunity to take the stage and talk about initiatives and issues important to people affected by diabetes. The HCPs and researchers who attend get to hear us and speak with us. It’s such a simple idea, but one that makes perfect sense!

It’s possible Bastian was translating something I had just said…
(Click for photo source.)

After a wonderful couple of weeks of real holidays – sun in Italy, less sun in London – I headed to Berlin, saying good bye to my family as we headed in different directions. I was bound for meetings before EASD officially kicked off. And they were headed to Wales and canal boats with extended family. We could not have found ourselves in more different settings!

My first day in Berlin was dedicated to HypoRESOLVE, the Innovative Medicines Initiative (IMI) funded project looking to provide a better understanding of hypoglycaemia. I am on the Patient Advisory Committee (PAC) for this project, which kicked off back in May this year in Copenhagen.

The project is divided into eight work packages (WP) and it was WP 8 that convened the first meeting. I was there as part of the PAC, and also to provide the personal perspective on hypoglycaemia.

Back in May at the kick off meeting, I had given a talk called ‘The literal lows of my diabetes’, where I spoke about my own experiences of 20 years of diabetes and how hypoglycaemia had impacted on my everyday life. This was a very personal talk, where I spoke about the fear and anxieties of lows, my different hypo personalities and the terror that comes with impaired hypo awareness.

But for this new talk, I wanted to do something different. I didn’t want to highlight my own experiences, because I am but one person and it is important that the audience never feel that they have ‘done diabetes’ and understand the ‘patient view’ because they have listened to one person.

I wanted my focus to be on the disconnect between how hypoglycaemia is regarded in the clinical and research world as compared with the real-living-with-diabetes world.

So, I used the tools at hand, and the fact that there is a vocal and ready to help diabetes online community just a few clicks away and sent out this tweet:

It was apparent straight away, as the responses came flooding in, that the way hypos are described and classified in clinical and research terms is very, very different to the way those of actually experiencing lows see them.

Here is how hypos are categorised in the literature:

Straight forward, neat, tidy, pigeon-holed.

And yet, when I asked PWD how they would describe hypos, here is what they came up with:

Some of the words were repeated multiple times, others appeared only once. Some of the words are the words I use to describe my own hypos, many I had not considered. Yet every single word made sense to me.

Hypoglycaemia, in the same way as diabetes, is not neat and tidy and it cannot be pigeon holed. I hope that my talk was able to illustrate that point.

And I hope I was able to highlight that using simple words and simple categorisations only service to limit and minimise just how significant and impactful hypoglycaemia truly is for those of us affected by diabetes.

You can keep an eye on the progress of HypoRESOLVE on Twitter, and via the website.  

DISCLOSURE

The HypoRESOLVE project funded my travel from London to Berlin and provided me with one night’s accommodation. I am not receiving any payment for my involvement in the Patient Advisory Committee.   

Previous disclosures about my attendance at EASD 2018, can be found on this post.

Click to be taken to Daisy Natives store.

I bought a new t-shirt the other day. I saw it on Instagram and decided that I just had to have it. I’m not sure if it was growing up in a mostly female household; or the six years I spent in an all-girls school; or perhaps it’s the friends I am fortunate enough to be around a lot; or maybe the fact that most of the people I work with are dynamic women; or raising a daughter in 2018. Whatever it is, girls supporting girls, and women supporting women is the approach I have always tried to take in both my personal and work lives.

I guess my thinking is that we need to look out for and support each other because we know that outcomes for girls and women around the world are not always that great. And also, when women build each other up, and support and encourage each other, we are unstoppable!

I was thinking about this last night as I followed a Twitter conversation that all started after a somewhat sensationalist article in a newspaper about a bloke (sportsperson?) who, as it turns out, seems to have some diabetes-related neuropathy. As people shared the article and spoke about it, there were a couple of comments from people with diabetes about this person – another person with diabetes – ‘not looking after himself properly’.

When I started reading, I almost pinched myself to make sure that I hadn’t been sucked into some sort of void, and been dragged back to another time. Because this conversation has happened before – countless times. (A search through Twitter and this post pointed me to just a couple of those times.)

Diabetes-related complications and stigma. Diabetes-related complications and language. They go hand in hand. And along for the ride is judgement.

The complexity between diabetes, and developing diabetes-related complications is far too much for my little brain to comprehend. But I do know that there are no guarantees in diabetes. And I know that blaming people for whatever path their diabetes travels is not helpful in any way.

When someone suggests that another person with diabetes is ‘not looking after themselves properly’ there is a lot packed into that. It may not be intended, but that comment is so loaded with blame and shame and judgement that it becomes agonisingly heavy and, quite frankly, terrible.

To suggest that someone’s diabetes-related complications are the result of them ‘not looking after themselves properly’ means that essentially what is being said is that the person intended for this to happen. That they ‘brought it on themselves’. That they deserve to now have to face a future of diabetes-related complications.

To that, I say bullshit!

And, somehow, it is even worse when a comment like that comes from another person with diabetes, because if anyone should understand how harmful judgement can be, surely it is others with diabetes.

Supporting each other doesn’t mean just patting each other on the back and saying ‘good job.’ It is far more than that. It is acknowledging that we are doing the best we can at that moment time with what we have. It’s accepting that there are myriad ways of managing diabetes, and that people should have the right and the ability to choose the way that is right for them – even if we don’t think it is right for us. It is encouraging others’ efforts, cheering their successes and standing alongside them when things are tough. It is being happy for other PWD when they are doing, or being invited to do, great things.

It is not saying ‘You are not doing enough’.

We would be quick to say that it’s not okay for a healthcare professional to suggest that we are not trying hard enough. We don’t accept it when the media make claims that people aren’t looking after ourselves properly. We push back and say it is not okay when those without diabetes suggest that we are not doing our very best.

And in exactly the same way, it is not okay for other PWD to criticise one of our own because, honestly, we should know better. We should be on the same side. We should be building each other up.

It is completely unreasonable to expect that people with diabetes are going to agree on everything, and actually, who would want that anyway? Diversity of opinions is as important as diversity of experience. We all have our own ideas and ways to live with diabetes and there will be times that we completely disagree. That is all fine, as long as it is done with respect.

But even with those differences – differences that we can celebrate – the commonality of messed up beta cells should be what brings us together to be on the same side.

I could be Pollyanna-ish about it all and say that we should just be kind to each other, and that may be a good place to start.

Living with diabetes is fucking hard. We never, ever get a break from it. No matter how manageable our diabetes seems or how cruisy things may be at a particular moment, it is still always there. It doesn’t matter if we are scaling mountains or running marathons. Or living our dreams or travelling the world. Or getting up in the morning and going to work or school. Diabetes does not take a break.

Diabetes doesn’t take a break. But we can give each other one. No blame. No shame. Just an acknowledgement that we are doing the best we can. PWD support PWD. That’s what makes us stronger. That what makes US unstoppable!

P.S. If you really don’t agree with what someone is doing with their diabetes, you can say nothing at all. You don’t have to be critical. 

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