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Last Friday, I flew to Sydney to take part in the first Australia HealtheVoices Conference coordinated and run by Janssen (disclosure at the end of this post).

I’d followed along the US versions of this event, which have been running now for a couple of years, always with diabetes health advocates attending. So I was thrilled when I received an invitation to take part.

The event was run on Saturday with a dinner on Friday evening featuring Turia Pitt as the keynote speaker. I’m going to write something about that another time. Today I want to focus on some of the actual conference. This is just the first post – the rest will come over the next week or so.

I was extraordinarily excited about being in a room with advocates from outside the diabetes space. (But also pleased for the safety of the diabetes advocate bubble! We were well represented – four of us seated at the same table, occasionally nodding at each other as we recognised the stories others were sharing, even if their health condition was different to the one we navigate.)

Anytime I am surrounded by health advocates (diabetes and other) I have a weird contraction of feelings: surprise and absolute no surprise. Surprise that experiences are so similar and yet absolutely no surprise that our experiences are different! I read this article from the SMH (written as a follow up to the event) and so much resonated about Luke Escombe’s story, despite his peers not living with diabetes.

The speakers at the conference were diverse and covered a lot of different issues. And holding it all together was journalist and TV presenter Shelly Horton, whose fabulousness I cannot even start to describe! As well as making sure everything ran to time, Shelly shared stories of her own health experiences of living with PCOS.

HealtheVoices emcee, Shelly Horton, hamming it up with some diabetes advocates.

We started with Samantha Jockel from Aldi Mum. She was a terrific speaker, however I found that not everything she said sat easily with me, mostly because at times I struggled to see the parallels between what I do (write a rambling little blog about about my own experiences of my health condition) and what Sam is doing (building a community which generates income).

I also realised I’m a crap blogger! As Sam eschewed the benefits of knowing your analytics and stats – she is an analytics ninja! – I realised that I rarely if ever look at the stats on my blog or other social accounts. Facebook sends me a weekly roundup and I categorically ignore the email; Twitter wants me to check the activity of different tweets, but I don’t; Facebook also tells me when I a post is doing better than usual and I get annoyed at the alert thinking that it was someone posting a cute cat meme: LinkedIn tells me how many people are looking at my profile, urging me to go and see who they are, but I’m seldom interested.

I know these are tools that can help me grow my audience and build my following, but I still have this idea that the only people reading are my mum and the guy from Romania who used to message me every day. (Perhaps if I looked at my stats, I’d know that’s not the case…)

Sam also spoke about boosting posts and ‘throwing some money’ at them if they could do better. I’ve never spent a cent on promotion of my blog and can’t see that I ever will. Once I hit publish and share what I have written on my social feeds, I don’t do anything any further. Occasionally I repost the link on Twitter, but only when I remember that there are people living in different hemispheres and were probably asleep when I posted it the first time so may have not seen it.

I guess the difference for me personally is this: My blog is not my job. I make no money from it and I have no intention of it ever becoming a money maker for me. I have a job – this is not it, despite the significant time and energy I spend writing. I blog for very selfish reasons – to find my tribe!

But there was much that did resonate with Sam’s talk and the overarching message that I took away was this: be authentic. As she spoke about the importance of finding our own voice online, she kept coming back to the need to be relatable, honest and real.

That did make sense to me, because I know that the only reason that I write is to tell my story about living with diabetes – the good, the bad, the ugly, the real.  I know that when I read about people living with diabetes, I want to read the genuine experience. The blogs I read – and keep going back to – are the ones that are undoubtedly honest and authentic.  Real life. Real stories. Real people.

DISCLOSURE

Thanks to Janssen (the pharma arm of Johnson and Johnson) for covering my travel and accommodation costs to attend the #HealtheVoicesAU conference. There was no expectation by Janssen that I would write about the event and everything expressed here (and on Twitter Facebook and other social feeds) is mine and mine-alone! To read more, check out the conference hashtag, #HealtheVoicesAU, on the socials. 

Paris was, as always, wonderful. The mild weather, meant it was lovely to walk everywhere. With only three and a half days in one of my favourite cities, I was grateful for the daily 40-minute stroll from the hotel near the Eiffel Tower via the Trocadero to the conference centre so that I at least get to see some of the city.

Even early morning meetings were bearable with views like these. (Hashtag: not photoshopped!)

Sunrise behind the Eiffel Tower.

On my first full day in the city, I attended an event hosted by Roche (all my disclosures are at the end of yesterday’s and today’s posts, as always). The Blogger #DiabetesMeetUp brought together almost 40 bloggers from across Europe. And me.

The day’s activities were a continuation of their event at EASD last year (read about that here), although attendance was expanded to also include a contingent of fabulous women from Italy. It was actually the fourth #DiabetesMeetUp event hosted by Roche with many of the attendees having been to all of them. (There was a comment when I tweeted a photo of the day that the group didn’t look particularly diverse. I’m flagging that here because I acknowledge the privilege in the room. I do think that it is important to ask how better representation can be achieved. The flip side is that the event targets bloggers, so there is already a bias for well-connected and informed people. I have no answers….)  

Just some of the bloggers…

The day was busy and very interesting. I have been an extremely vocal critic of device companies failing to engage with consumers in the early stages of device and software development. It frustrates me no end when I hear of the limited and barely tokenistic engagement undertaken by device companies so Roche’s approach is truly a breath of fresh air.

It was also pleasing that while some of the day was dedicated to showcasing product, there was a lot more than that on the agenda. Plus, all product presentations were an opportunity for the bloggers to provide feedback, plus there was plenty of frank discussion from both attendees and Roche staff.

So, what devices where on show? There was some more about the Roche Insight CGM, mostly about the app that is being developed to accompany the device. When this was discussed at the EASD #Diabetes Meetup last year, there were many suggestions and recommendations about how to improve the app platform. It was utterly brilliant to see a lot of those changes integrated in the new design. Obviously it’s a lot easier to make changes to software rather than hardware, but still this focus on gathering feedback and then making the changes is commendable.

One of the most exciting aspects of the discussion for me was the discussion around the Insight systems alarms, specifically the language being used. Some of the words and phrases were flagged as not being quite right, and there was an opportunity to wordsmith just what language would be used. For example, the term being used was ‘warning system’ and I questioned if that was really the best word available. I think of ‘warnings’ as something connected to inclement weather or danger on the roads, not really ideal when thinking about data I use to help manage a health condition each and every day.

Talking language. It was hard to get the microphone away from me.

The customisation of this system is outstanding. Other than the super-low (safety) alarm, all others are fully customisable, can can be activated for certain times of the day, use different sounds for different alarms for different times and the user can build up to ten daily profiles. The objective for such thorough customisation is to work towards reducing alarm fatigue as well as create a more flexible, individualised and intelligent alarm system

As yet, there is still no integration with the Insight CGM and the Insight pump – a criticism and recommendation from the group back at EASD last year, however I believe this is on the radar. Undoubtedly, the feedback from the group was that this is essential, so I hope that the Roche team find a way to make it happen!

The other product that was (very briefly) discussed was the Senseonics Eversense system – a ninety day implantable CGM sensor and data management system. This tech is currently in trial stage and more information can be found here.

Roche gave all the Blogger #DiabetesMeetUp attendees a press pass to ATTD which meant that throughout the remainder of the conference, there was a significant consumer contingent roaming the halls and sitting in sessions. Considering that this is a group of highly connected, tech-savvy and smart individuals, it was terrific that there was the opportunity to be part of the conference amongst the health professionals.

I’m really grateful to have been offered the opportunity to attend the day – a very big thank you to Ute and the team from Roche for extending an invitation to me (I promise, I am not always the jet lagged mess you see at these events!) and for your ongoing commitment to engaging the community. As well as participating in the agenda set by Roche, I was able to speak to some amazing and activists who each day are advocating for people with diabetes in their own countries. The level or excitement and commitment to what they do simply never wanes.

Disclosures

My flights and accommodation costs to attend the Roche Blogger #DiabetesMeetUp were covered by Roche Diabetes Care (Global). They also provided me with press registration to attend ATTD. My agreement to attend their blogger day did not include any commitment from me, or expectation from them, to write about the day or their products, however I will be sharing my thoughts on the event here. Plus, you can read my live tweets from the event via my Twitter stream.

When I spend time with friends in the US, they often take great delight in the words I use or the way I pronounce things. Apparently, there is much to amuse in the Australian-English language. In New York back in January, when speaking with friends about our voting practices, I explained the concept of the ‘sausage sizzle’. Our friends were looking at each other clearly wondering if we were serious, or completely making things up (i.e. fair dinkum or having a lend of them). It is my aim to have as many of my DOC friends as possible using ‘frocked up’ whenever they speak about dressing a little fancily!

And, somewhat oddly, it is in America that I am (apparently) most difficult to understand. I know I speak very, very fast and the frequent waving of hands can be distracting. I’ve learnt to adapt with some things (spelling my name when ordering coffee, I say ‘zee’ instead of ‘zed’) and try to adapt to the local lexicon (trash instead of rubbish / gas instead of petrol / Waldo instead of Wally* etc.) and try to slow down the speed with which I speak.

It’s February which means one thing and one thing only. It’s a month of red roses. That’s right, it’s time again for Spare a Rose, Save a Child.

I could tell you all about it again, but let me leave it to Manny and Graham who, once they get over the language barrier, do a great job of explaining the whole idea behind Spare a Rose

I make a monthly donation to Life for a Child via this campaign. Each month AUD$6 comes out of my account and directly deposited into theirs. Six bucks. Basically, that’s a coffee and a half. So, the equation is this:


That’s right: for what it costs me to purchase 1.5 coffees, a child in a developing country survives for another month.

Every February, I urge people to consider donating to Spare a Rose Save a Child – either as a one off on Valentine’s day, or to set up making a monthly donation. And this year, with all that is going on in a very messed-up world, here is one small way to feel that you are helping out someone who really, truly needs it.

‘Inshulin’ or ‘inssulin’. It doesn’t matter how you say it. Just help a kid in need get some!

Click here for information about this year’s Spare a Rose Save a Child campaign, including how to donate.

spare a rose

 

*IT’S FREAKING WALLY, NOT WALDO!

Back in 2012 when we were thinking of starting the #OzDOC weekly Twitter chat, Kim, Simon and I were committed to making sure that it was a safe place, welcoming to all who wanted to use it. We encouraged people to actively participate, lurk in the background, jump in and out as they needed.

I had always been so impressed with the non-toxic and inviting place the #DSMA chat was, welcoming people with all types of diabetes as well as a few health care professionals, and I hoped that we could replicate this environment, albeit on a smaller scale, with #OzDOC.

Pleasingly, that’s the way it started and now, it continues to be that way. While I’m no longer involved in the running of OzDOC, or moderating its weekly chats, whenever I do drop by to participate, it is clear that the safe and inclusive model that formed its foundation continues.

It has been great to see that the encouragement of healthcare professionals to join in – lurk at first to get the idea and then respectfully participate – has continued, and frequently, a DNE or dietitian or endo will pop in and contribute.

But last night, during the chat, there was an intrusion that was not respectful. In fact, I likened it to someone bursting, uninvited, into my house and yelling that they didn’t like the way we’d decorated it and then offering to fix it as long as I paid them. I bristled immediately. And felt protective of the people in the #OzDOC room who had been so candidly and honestly sharing their thoughts.

This was a particularly delicate chat. Ashley had more than expertly navigated the sometimes tricky waters of a discussion about the place diabetes fits in our lives, and ended the chat with a question about burn out. It is a testament to the space that is #OzDOC to just how candid and honest people were in their responses.

So, the idea that someone tweeted something about how so many participants were clearly living with ‘out of control’ diabetes and then linked to her fee-for-service website, was not only inappropriate, but also insensitive, thoughtless and showed a true lack of understanding of what people with diabetes are dealing with.

My mother hen instinct kicked in. I had just laid myself bare as I used words that describe burn out to me, and others had as well. This was absolutely not the moment to promote a business and, at the same time, tell people they were doing a crappy job at managing their diabetes. And there is no place for judgement in this chat, especially from someone so clearly out-of-touch.

While my response was somewhat reflexive and probably could have done with a moment away from the keyboard before hitting the ‘tweet’ button, I don’t regret that I did it. And the responses from others in the chat suggested they too were feeling uncomfortable about the intrusion to the discussion.

I was furious that someone had so aggressively and judgementally invaded the safe space that has been so carefully cultivated. ‘Out of control’ diabetes? Really? Fuck off. (Actually, that was the response I wanted to type, but kept myself nice, so maybe I wasn’t as harsh as I thought.)

My concern about this intrusion was twofold. Primarily, I would hate for any person with diabetes to feel afraid of participating in any sort of peer-based activity for fear of being judged. We get enough of that outside of the spaces we create for ourselves and certainly shouldn’t have it forced upon us in our own groups.

But also, I would hate for any HCPs to think that they are not welcome to participate. They most certainly are, however the respect, lack of judgement and kindness expected by participants is expected of everyone. If they are unable to demonstrate that, stay away.

I’m not naming and shaming the person who tweeted last night. The tweet has been removed anyway. But, I would absolutely encourage them to come back next week and the week after and the week after that to learn. Watch what goes on in these chats, listen to what people are saying, understand the real-life sensitivities of diabetes.

And then, feel free to softly, softly join in. Respectfully ask questions (after asking if it is okay to ask questions) if there is something that needs clarifying. Gently share ideas that may be of benefit. But absolutely do not try to sell something. And check your judgement at the door.

no-judgement

One of the discussions at #MayoInOz turned to the divide between personal and public social media use – especially relating to our loved ones. ABC National Medical reporter, Sophie Scott, explained the rules she’s put in place to define her professional and personal life, trying to keep the two distinct to protect her children.

It’s something I frequently think about. I use social media a lot. But despite possibly appearing to be a (social) media whore, I have rules about how I use it when it comes to my family – especially our child. The first photo I posted of her was when she was three years old. She is standing in the front garden of our old house, under the weeping silver birth tree, dressed in one of the fairy dresses that was on frequent rotation at the time. She has a cheeky smile on her face and looks quite delicious. I’ve since posted baby photos of her – usually around her birthday and on the pregnancy diary I recently published.

These days, she gets to veto whether or not I post a photo of her. If she is happy for me to share, I do. If not, I don’t. She often asks who will be able to see the photo before deciding if it is okay for me to share it.

But when she was wee, I had a very easy rule for sharing photos of her. If I wouldn’t share a photo of me doing something, I wouldn’t share a photo of her doing the same thing. So, no photos of her in the bath, naked on the floor on a towel, throwing a tantrum, crying, when she was sick, doing something embarrassing or looking grumpy. I don’t want photos of me in any of those situations online, so how could I justify it as okay for me to post photos of her like that – even if she is a kid?

This isn’t necessarily about me being worried that someone is going to do something nefarious with the photos. It’s about how she’d feel knowing others have seen her like that.

The same goes for sharing stories about her. I would never tell a story that would embarrass her – now or later in life.

The discussion at the conference turned to how parents of children with health conditions and disabilities share photos and stories of their child, perhaps not thinking about the repercussions for their child. I have commented on this in the diabetes world, and been told in no uncertain terms that I don’t get a say in this discussion as my child does not live with diabetes.

I understand that my perspective on diabetes – diagnosed as an adult – is very different to that of a child’s or the child’s family. But I am an adult with diabetes. And when I see a photo of a kid in hospital with tubes coming out of them because they are in DKA, all I can think about is how that child is feeling at that exact moment.

I’ve had a couple of DKA hospital admissions thanks to gastro bugs. I am not being melodramatic when I say that I felt that I was about to die. Between the throwing up, unstoppable nausea, desperate need to quench my thirst, weakness, rapid heart rate and feeling terrified, all I wanted to do was curl up and feel better. Or die. I would be horrified if someone shared photos of me at such a vulnerable time. I don’t want anyone to see me like that – ever.

The same goes for when I am having a weepy hypo, unable to stop the tears or the unintelligible stream of consciousness babbly coming from my mouth…or a giggly hypo where I am borderline hysterical. I don’t want that recorded for all to see. (I once filmed myself having a scary low and when I watched it back a couple of days later, it was truly shocking. I deleted the video, terrified that it would somehow find its way onto YouTube or Facebook – probably posted by me when I was next low!)

When I’ve asked parents of children with diabetes about this, they say that they do it as an awareness-raising opportunity. By showing their kid during the more serious diabetes times, they feel they can give an accurate picture of life with diabetes. It shows the pain and the fear and the relentlessness of it. I understand that – trying to tell the story of diabetes in a way that resonates with those not actually living with it is important. It’s one of the reasons I share my story.

But how do we do that without it seeming almost exploitative – especially if the story or photos we are sharing is actually not directly ours?

I was glad for the discussion at #MayoInOz, because I’ve started several posts about this issue, but have always felt clumsy and as though I am overstepping. I still hear the words ‘You don’t get a say’ and delete whatever I have written for fear I will be chastised and told to step away.

But after the conference, I decided I did want to write about it and, perhaps, start a discussion that points specifically to the diabetes world. Where is the line drawn between showing the world what diabetes is about and exploiting or exposing our loved ones? And who gets to decide? Is consent an issue here? Or is the child’s story inextricably tied up with their parents and therefore there is no line?

Thankfully, someone has written about this in a far more eloquent and elegant way! One of the other scholarship winners at the conference was Carly Findlay. Carly is a well-known blogger, writer, speaker and appearance activist, and this piece she wrote last year is definitely worth reading. (She’s also a genuinely nice person who didn’t even flinch when I once accosted her in Lygon St, almost yelling at how beautiful she looked at her recent wedding because she absolutely did and I just needed to tell her, in a ridiculously excited and animated manner. She was most gracious to this bumbling mess!)

Postscript

I don’t think I have really done this issue justice. I do know that some of my favourite bloggers are parents of kids with diabetes and I think that is possibly because I have never felt uncomfortable about what they have written. While Annie Astle is a very, very, very good friend of mine and my family’s, she is also a brilliant writer and when she shares her family’s story, it is never at the expense of Pumplette’s dignity. (Annie’s own dignity is often given a bashing because she is so bloody self-deprecating!) I recommend her blog to every parent with a newly diagnosed child because her posts are beautiful, honest and never manipulative.

A couple of weeks ago now, I was incredibly fortunate to win a scholarship to attend the Mayo Clinic’s Healthcare and Social Media Summit in Melbourne. I’m a little slow in getting anything out about it, because…well because November. But November is over! And finally, the first of the few posts I’ve started is here and the others are coming. #Tardy

Five scholarships were offered for consumers to attend, and I was encouraged to apply. So, I diligently filled in my application, hitting ‘submit’ moments before the deadline. (Not to self – always have an up-to-date bio available!) And then, the week before the conference, I squealed aloud in a meeting when I received the email, letting me know my application was successful.

The scholarship recipients. (Click photo for source.)

Before the event even started, there was online chatter about making sure the consumer reps in the room connected. Which we did! Before and throughout the conference, calls to ‘find your tribe’ resonated, and I certainly felt I had found mine! It was an absolute delight to meet and an honour to wave the consumer flag alongside Carly, Mel, Liat and Belinda.

And others in the tribe made me realise just how high the bar is set! Lisa Ramshaw, event organiser, is a force of nature. There is no other word for her enthusiasm and dedication to healthcare social media. I suspect Melissa Cadzow has #patientsincluded tattooed on her body somewhere so great is her commitment to the inclusion of consumers in all activities that affect us!

Kim giving her talk

And of course, the five-minute presentation in the innovation showcase from Kim Henshaw about OzDOC presented another strong consumer voice to the event. Kim spoke about how healthcare professionals use the weekly tweetchat as a platform to learn and engage with consumers. Kim did the OzDOC community proud with her talk, using her time to accurately crystalise the very essence of the power and influence of an online network.

It’s these people that are the reason I love these sorts of conferences – and their like-minded attitude, and endless promotion of the importance of the consumer voice and the value of using social to connect, inform and support. This is mostly a huge positive, but it does get me thinking that the people who should also be in the room probably aren’t. Organisation CEOs need to be better represented to be taken on the journey of why HCSM cannot be dismissed as ‘the way of the future, so we’ll get to it soon’, but rather ‘It’s here. We need to Do.It.Now.’ This would inform a true real top down / bottom up approach to embracing healthcare social media within their organisations.

The diabetes contingent: Me, Kim and Mel

The underlying message of the conference – at least for me – was reinforcement of something that I have known and promoted for a long time: health social networks bring people together. Before online social platforms, we did it face-to-face. The message of the ‘modern day kitchen table’ was brought home to me again and again and again, and I understood that the barriers to using social are absolutely not insurmountable – despite feeling that way at times with all the justifying we seem to have to do.

And the message of ‘Connected communities get more done’, rang so true. I thought to the first morning of the conference when I was late because I’d been moderating an hour of the 24 hour World Diabetes Day tweetchat, talking diabetes stigma with people from all over the world, affected by diabetes. I thought to the Spare a Rose; Save a Child campaign. I thought about #DSMA and #DeDOC and #OzDOC and all the ways that our own diabetes community connects to get things done.

My conference fees for the two days of the #MayoInOz conference were covered through the consumer scholarship program. I was not expected to write anything in exchange for the scholarship. Thank you to the organisers of the event, Consumer Health Forum Australia and Melissa Cadzow for the scholarship. You can read more about the conference by clicking on this link for tweets.


Today, I gave a talk to healthcare professionals at a hospital in outer Melbourne. I was invited months ago after the organisers heard me speak at another event, and they wanted me to speak about living with diabetes.

As I said in the introduction to my talk, I am dead boring. Plus, I am only one voice. So, to create some balance and some interest, I reached out through Facebook and asked this:

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As usual, the online community didn’t disappoint. I had over forty responses and weaved them into my presentation, adding real impact to what I was saying, reinforcing my comments with the comments of others walking a similar path of life with diabetes.

I started by asking the audience a question…

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And then I said that I would be talking about life with diabetes. Except, I reminded the audience that life with diabetes was very different depending on where in the world you were diagnosed and that my story is about my ‘first world diabetes’ and I checked my privilege almost as a disclaimer.

I used that point in my talk as an opportunity to speak about those who cannot access or afford insulin and how this is simply, not okay. I could sense the surprise in the room as I said that people are dying because of lack of access.

 

Then I spoke about what diabetes is to me and here is what I said:

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It’s boring and tedious and frustrating.

experts

It’s made me an expert. And that we need our HCPs to acknowledge the hours and hours and effort we put into managing our own brand of diabetes and the expertise we develop from living so closely with this condition.

images-2

It’s about humour – because laughing is a tool I use to get through this and that’s okay.

jrwiv9f2It’s about words, because language matters and sticks with us forever.

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It’s about stigma. I asked if they could think of another condition that was so stigmatised and surrounded by blame – and that while we experience it with type 1 diabetes, I said that I believed my brothers and sisters with type 2 diabetes have it so much worse.

2it0mqr

It’s invisible – despite the bright blue patch surrounding my Dexcom, most of the time it is hidden away and not on show for all to see.

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It’s about people and community and the DOC and the people that are like the air I breathe – without whom I would not be managing at all.

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It’s about my family. And then I explained, fighting back tears, that this is the hardest part of life with diabetes for me. I’ve written about it a lot, spoken about it often. But thinking about how diabetes impacts on Aaron and the kidlet breaks – absolutely shatters – my heart into pieces. The worry I cause my parents makes me feel guilty and resentful. And every day I regret the time I told my sister that my life expectancy had been cut thanks to my type 1 diagnosis because I will never forget the look in her eyes indicating the pain I had just caused her.

I answered a couple of questions and then my talk was done. I thanked the audience for listening, stepped down from the stage, took a deep breath. Someone came up to me as I was gathering my bags and said that she learnt more about real life with diabetes in that talk than in all her years nursing.

This is the power of story telling. The comments I read out and shared have so much power in them. We need to keep telling our stories, turning the way we talk about diabetes on its head. It’s not about the numbers, the tools or anything else. It is about people.

Thank you so much to everyone who shared their comments with me on my Facebook post yesterday and today. 

What a week. World Diabetes Day (WDD) is over for another year, but there is still lots going on in the diabetes space and in my life in general. Here are just some of the things making my brain a minestrone soup of dot points.

Mayo Clinic in Oz

I was lucky enough to win a scholarship to attend the Healthcare and Social Media Summit run by the Mayo Clinic earlier this week. I haven’t even started to pick apart all the amazing things I learnt during those two days, but there will be more to come soon.

Crown

Downtime is bloody hard to come by these days (because: November). BUT!!!! Binge watching a new show helps with some mindless entertainment and winding down at the end of the day. And Netflix has come to the rescue with The Crown. I admit that this is just a space filler until the REAL EVENT…But in the meantime, it will do and is actually super enjoyable.

Talking diabetes without being rude

We often see ‘Things to not say’ lists. I wrote one here where I suggested the only thing to say to someone living with diabetes was to offer them a Nutella cupcake.

I still stand by that advice, however thought I’d use WDD as an opportunity to write a more comprehensive list and it was published on the Mamamia Women’s Network. You can read it here – and may want to consider sharing it widely.

One of the things that we need to aim for is talk diabetes OUTSIDE our diabetes world. This article was not written for people affected by diabetes – we already know to not say most of these things. It is for those who say the annoying things because they don’t really understand diabetes.

So – have a read. And then share it around. And add your own ideas in the comments section on the Mamamia page. Let’s see just how far this can go to stopping some of the comments we hear over and over and over again!

Gilmore Girls

One week to go. We are ready!

WDD Twitter Marathon

The force of nature that is Cherise Shockley managed to pull off (once again) a 24 hour tweetchat for World Diabetes Day that included moderators and participants from all over the globe with an impressive variety of topics.

There was a bit of national Aussie pride in there with 4 hours of the chat being moderated by advocates from Down Under. I moderated an hour – with a focus on diabetes stigma – at 5pm ET which was 9am (Wednesday 15 November) AEDT, meaning I was into hour 27 of WDD when it was my turn to ask the questions.

Blue fatigue

My hand is a pretty damn good indication of how I am feeling right now. Still hanging in there with the whole ‘go-blue-diabetes-awareness-rah-rah-rah’ thing, but only just. Half way through Diabetes Awareness Month; World Diabetes Day is over and I am really feeling a lot of blue fatigue.

It seems that I am not the only one. Kerri wrote this on Six Until Me the other day and it resonated with a number of people, me included.

But the people; the people!

I was lucky enough to spend World Diabetes Day with some great diabetes people. We had house guests from Germany with us and my neighbour Jo popped in for a bit too. And my Amazing family were also there and, you know what, we hardly spoke diabetes at all!


It reminded me that my diabetes world is about people – those I’ve met; those who support me through it all; those I connect with online and in real life. And I know that I couldn’t do this without them to help me through.

#IFLGseesawchallenge

And finally, diabetes is such constant balancing act, and I don’t know about you, but I rarely manage any semblance of equilibrium!

So, I love the Insulin for Life Seesaw campaign – as both a metaphor for diabetes and also as a way to raise funds for an important cause.

Get involved by uploading your photo depicting the seesaw challenge of living with diabetes. Add the tag #iflseesawchallenge to your pic and Medtronic Australia will donate $1.25 to Insulin For Life Global. $1.25 is the amount it costs to transport a week’s worth of insulin to someone in need in a developing country.

Sometimes, the best diabetes meetups involve a few people with diabetes just sitting around having a chat. Perhaps it’s over dinner, or maybe over a coffee. There’s no formal agenda, there are no official speakers. It’s just people with diabetes catching up and talking.

Now, multiply that by … a lot. In fact, put about 40 diabetes advocates in a room together. Throw in a few HCPs as well. And some people from industry. Hell, there may even be a few people from professional and consumer diabetes organisations in there as too.

Now you have #DOCDAY; a diabetes meetup on steroids!


The second annual #DOCDAY event was coordinated and hosted by Bastian Hauck at EASD in Munich. Last year, he had this idea and organised what he thought would be a few people in a café in Stockholm. He underestimated how many people would want to attend, and the room was overflowing with advocates from Europe (and the usual Aussie ring-in).

Dr Andrea Orecchio, right, with Danela D’Onfrio from Portale Diabetes (an Italian diabetes peer site).

This year, he got smart. He hired a room at the conference centre which was a genius move because it not only meant it was so simple and convenient to get to, but it also meant a whole heap of HCPs came along too. (Big hat tips to the divine trio from AADE, Hope Warsaw, Deb Greenwood and Nancy D’Houln, Aussie Dr Kevin Lee, and the delightful Dr Andrea Orecchio from Switzerland who impressed me with his ability to speak (and tweet in) four different languages. Perfectly fluently.)

There was no real structure to the meeting, apart from the insistence that all attendees have their photo taken on an old-school Polaroid camera to be placed on the attendee wall. Bastian kicked off the afternoon, saying a few words and he also asked some people to talk about any exciting diabetes initiatives they’ve been involved in. He asked me because he knows that in my jetlagged state I’m likely to say something inappropriate which will lighten the mood.

I was absolutely enthralled and excited to hear of some of the work other diabetes advocates have been up to lately.   Here is just a taste:

Cannot wait to see this book published!

I simply cannot wait for the release of this new book from the team at Anna PS. Anna Sjoberg and Sofia Larsson-Stern from Sweden have collected stories from 20 people with diabetes and will share their personal experiences of lives with diabetes. The Swedish version of I Can, Want and Dare will be out in time for World Diabetes Day, and the English-language edition will follow shortly after. You can pre-order here. What a brilliant Xmas stocking filler! (Disclosure – Anna and Sofia invited me to contribute to the book. I have no financial interest in the book.)

Med Angel.

Did you know that 93% of people using temperature-sensitive medications are doing it wrong? Neither did I! Amin Zayani has created a very nifty smart sensor and app to help you know if your insulin is being kept at a safe temperature. This is a super easy device to use and is all about safety. I know I can certainly be accused of being very relaxed about keeping may insulin at optimal temperature and (touch wood) have never had a problem. But just at this conference, I was speaking with someone whose insulin had been affected by temperature and was absolutely not working. At all. This is something that will be very handy for a lot of people! Follow Med Angel on Twitter here.

IDF Europe has introduced a social media prize in diabetes. Quite frankly, the DOCDAY room was full of worthy recipients. Nominate someone now!

Peer networks in France with Paul-Louis Fouesnant.

I always love hearing about grass-roots diabetes support initiatives, and Paul-Louis Fouesnant from France spoke about Diab’ Mouv peer events he organises regularly.

So what did I speak about?

I spoke about driving and diabetes, specifically the advocacy win we have just had with the launch of the new Australian Assessing Fitness to Drive Guidelines. (More about that later this week.)

I spoke about CGM subsidies, a hot topic everywhere, but particularly in Germany where a reimbursement program had just been announced.

And finally, I spoke about language, because EASD is one of the most challenging conferences when it comes to language. I spoke about why language matters and why the real changes that are being made in this space are driven by people with diabetes. We have been talking about this for years and years now and it is terrific to see it (finally) on the agenda.

By the end of the afternoon, I was overwhelmed by all of these incredibly inspiring folk. For most of them, this is a labour of love with little, if any, financial reward. We blog because we want to share our stories and connect – nothing more. We come together to share our successes and our frustrations because we know that this is a sympathetic group who ‘get it’. Between now and when or if we next get together, we will keep in touch and continue to share our stories because that’s what we do. Thanks to everyone there for being so generous with this bumbling, jet lagged mess.

Just some of the advocates, activists, bloggers and HCPs in the #DOCDAY room!

My disclosures for my attendance to EASD2016 can be found on this post. 

I want to try something new and I need your help. I am trying to work out just how different it is around the world when it comes to paying for a vial of insulin. Here in Australia, a 10ml vial of Humolog costs me just under eight Aussie dollars. What about you?

So, I’m asking for you to post a photo of yourself, with whichever insulin you use (penfill or vial) and tell me how much your out of pocket cost is in whichever currency you use. For some, it will be nothing. For others, a lot more.

Post your photo on the Diabetogenic Facebook page, or tweet it using the hashtag #InsulinPlayingField. And on World Diabetes Day, I’ll share the results.

So go! And share this around. Let’s see how far we can get this going and how different the playing field is across the globe.

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