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#ADSADEA2016 highlight pics

August 26, 2016 in Advocacy, Awareness, Communication, Conferences, Diabetes, Health, Peer support, Real life, Social media | Leave a comment

I’m back home after three days on the Gold Coast for part of this year’s Australia Diabetes Society – Australian Diabetes Educators Association conference. More to come next week, when I’ll try to pull together my very messy notes.

For today, here are some pictures!

As I took the stage to chair one of two sessions at the Roche Educators Day in Tuesday, I realised I had already been up for seven hours. It was only 11am. Sentences were difficult until my fourth coffee of the day kicked in!

On the job. Professor Steven Boyages’ talk: A connected ecosystem for healthcare professionals & their patients’ was full of practical tips about using technology to support people with diabetes.

This was the moment I opened the new NDSS Diabetes and Emotional Health Handbook (for health professionals supporting people with diabetes) and I saw Diabetogenic on page 24! Thanks for capturing, Professor Jane Speight!

Proud moment!

Advocates running amok. We actually behaved ourselves quite well. Mostly.

Although, we were mighty busy! Three of the top four influencers at the conference happen to be consumer advocates, sharing information from the conference specifically with the intention of reaching other PWD who could not be in the room.

Martha Funnell used this in her talk on day one. Sums up many, many days!

Rather proud of this special young lass. Here’s Ashley presenting on her work focussing on the needs of young people with type 1 diabetes.

This is a combination of jet lag and exhaustion. (Jet lag belonged to Harriet.)

The NDSS stand looked very bright thanks to these beautiful resources from the Young People with Diabetes Program.

And another proud moment. Kim’s outstanding work on the national roll out of Mastering Diabetes means this resource is in the hands of those who need it most: children with type 1 diabetes, their families and schools. Well done, Kim! (And I’m holding Moving on Up which I am equally proud of!)

Spot the diabetes devices….

Gold Coast.

Proper wrap up coming next week. Enjoy your weekend. I know I certainly will! (But you can play catch up by checking out all the #ADSADEA2016 tweets.)

Welcome or not?

August 16, 2016 in Diabetes, DOC, Peer support, Real life, Social media | 10 comments

I’ve been interested to read a few things lately on Twitter about the DOC not being a particularly welcoming environment. I am both saddened and surprised to hear that some feel that way, because I have always found the community to be very, very supportive and welcoming. Perhaps I am fortunate, or perhaps I have just found – and engage with – people who are friendly and happy to embrace new people in the community.

I’m unsure if feeling unwelcome is because there is a sense that the community may be a little like a high school clique. There are people who have known each other many years in this space, so they have a comfortable and easy banter as they share stories and inside jokes. I know that when I started, I was worried about that, but anytime I tried to engage, I found nothing other than friendly responses.

When I first walked into the DOC playground a few years ago now, I was considering starting a blog after years of reading what others were saying about their lives with diabetes. I’d lurked around a few online platforms to see how people interacted and what people said.

Then, one day, I decided I would join a tweet chat, and I tentatively said ‘hello’ to the #DSMA world. The rest is history and now I am a regular contributor and participant – both online and off – in the community.

But it did take me a while to understand the lay of the land and to get a handle on online communication. Trying to adequately put across a point in 140 characters or fewer leaves little room for qualifying comments, so often it’s only the bare bones that can be offered. This can sometimes leave people feeling a little taken aback at the directness of discussions.

I am, by nature, very direct. I take the ‘tell-me-what-I-need-to-know-and-leave-it-at-that’ approach, so Twitter is a perfect platform for me. Say what I want and get out! But I know that sometimes, I come across as being very direct; some may even say confrontational. People who meet me after having only engaged on Twitter say they are surprised that I am a lot warmer in real life that online. (I never know whether to apologise or say thanks to that…)

I had to learn that just because people had differing opinions didn’t mean that they were attacking me, or that I wasn’t welcome in the discussion. In fact, some of the people I respect most in this community are people who I don’t usually agree with. They challenge me to think about things differently and to step out of my comfort zone. I’ve engaged in some really robust and heated discussions about different aspects of diabetes. As long as it is done with respect, (and an understanding that an opposing opinion isn’t a character flaw!), I’m happy to not agree.

And, possibly most importantly, I learnt that I didn’t need to love everyone in the community. I’ve written about that before, and how it came as a huge relief when I realised that I wasn’t going to be friends with everyone; there would be some people I just didn’t really feel any connection to – just as there are many who don’t gel with me.

The DOC is a big community; there are many of us. And when there is a community, there will always be people who are more vocal and more active. But they are not the only people in the community. It really does come down to finding people where there is some sort of synergy, or some way to connect. Just like in real life!

So what’s the take away from this? I hate for people to feel that they can’t be part of the community because they have a different view to others. I have not come across another person in the DOC who I agree with all the time. But equally, I’ve not ever had someone attack me for having a different opinion to them. (Trolls excluded in that last comment, because trolling is attacking and just not necessary.)

I guess the struggle is that when you have a lot of very passionate people given a microphone and a stage, we get very, very worked up at times and defend our position fervently, challenging those who don’t agree, building alliances with those who do. We can be a vocal bunch, we like to be heard and listened to, and we want to defend, defend, defend what we say. I am guilty – if that is the right word – of being and doing all these things.

But I genuinely do want to hear from everyone. I don’t have to agree, or even like, what you are saying, but I want to hear it. Any community is stronger with diversity of opinion, experience and outlook. And the community is weaker when people do not feel that they are free to share their thoughts.

The modern day kitchen table

August 3, 2016 in Communication, Healthcare team, Peer support, Social media | 1 comment

I was super late for last night’s #OzDOC tweetchat, coming in for the second half of the lively discussion. The questions were about how HCPs can engage on healthcare social media (HCSM), and the answers were to assist physician Dr Kevin Lee who is presenting this very topic at the ADS-ADEA conference on the Gold Coast later this month.

In recent years, I have given and heard many talks about why HCPs might want to consider using SoMe as a tool to engage with PWD (or, more broadly – people with any health conditions), and also how they may find SoMe useful to engage with other diabetes HCPs.

Presenting at the 2013 ADS-ADEA meeting about social media and healthcare.

Maybe it’s just me, but I am bemused that usually these presentations are targeted at such an ‘entry’ level. Social media is not new. Healthcare social media is not new. And yet, the presentations about HCSM at most medical conferences all have a ‘101’ feel to them, as though it is emerging technology and a revolutionary and new way to communicate. It is neither of these!

In fact, communities gathering on social media is just peer support 2.0. (Which is what I wrote here. Three years ago….)

And yet, the anxiety around it is still present.

I suspect that there are several reasons for this nervousness.

Firstly, by its very nature, SoMe is unregulated, and I will fight to the death to say this is a good thing, not something to fear. Its organic, unstructured and unpredictable nature is part of its power.

Even in a facilitated forum, (such as as tweetchat), there is only limited control held by the moderator – and a good moderator knows that their role is sometimes to sit back and watch (and encourage) the flow of, and tangents in, the discussion – that is often where the magic happens!

HCPs considering venturing into the patient-held HCSM space (different from interacting with their peers) need to consider what they plan to do once there. Are they going to be providing advice? Or do they want to engage in discussions? Perhaps they just want to quietly lurk, using it as a learning experience.

Whatever they choose do to, simply stepping in and having a look around will, hopefully, alleviate many of the concerns and fears they have about HCSM – especially once they understand there is no mystery to this way of communicating.

But I really do think that it is not our role as PWD using HCSM to provide a comfortable space for HCPs. And we shouldn’t feel the need to moderate our discussion for fear of who is listening in.

I have always considered social media to simply be a different way for having a conversation. There is no mystery behind it and there is nothing to fear. This thread from last night’s tweetchat sums this up perfectly! (Thanks, @MelindaSeed!)

Interweb Jumble #17 – The tech edit

July 22, 2016 in Awareness, Devices, Diabetes, DOC, Pumps, Social media, technology | 4 comments

I woke up today to feeds full of tech – diabetes tech. Plus I seem to be reading heaps and talking about not-so-new, but still awesome tech-y stuff.

Diabetes technology has been on my mind a lot lately (as well as on my body). Mostly, I have been thinking of the evolution of how dtech moves from being a niche market embraced by only a few, to becoming mainstream.

Back in 2001, those of us using pumps were seen as leaders in the dtech area. Many diabetes HCPs had never even seen a pump and certainly were not comfortable encouraging people to use them. The only reason I started using this technology was because I met someone using one at a diabetes event and asked her. I then spoke with my endocrinologist who was incredibly dismissive, labelling the technology as dangerous. I interviewed for a new HCP team to find people who were more willing to embrace technology.

The same thing happened when CGM was launched here.

And the same with new and different other devices. iBGStar, Libre, diabetes apps – most often, the interest is led my people with diabetes who force the establishment to catch up and get on board.

And I think it is still happening. Here are some things that are being spoken about by patient advocates A LOT. How many of your diabetes HCPs would know about the current state of play in the space? Next time you see them, why don’t you ask?

TANDEM

Makers of very cool (and, frustratingly, unavailable here in Australia) t:slim insulin pump, Tandem Diabetes Care, has joined forces with digital health company, TypeZero Technologies. Yesterday’s announcement explained that the two have entered into an agreement whereby the next generation t:slim pump will integrate TypeZeros’ artificial pancreas technology.

More here.

BIGFOOT

#IBelieveInBigfoot even more after news today from the start-up that they have commenced clinical trials of their smartloop automated insulin delivery system. BigFoot Biomedical is hoping to commercialise their product by 2018. That’s way less than 5 years, folks!

More here from the team at Diabetes Mine and here from the team at ASweetLife.

FDA votes on CGM

Looks like our Dex 5-wearing friends in the US will soon have the same classification on their devices as us here in Australia (and in Europe) with the FDA voting to revise labels to support treatment decisions based on CGM data without confirmatory BGL checks.

The live tweeting from the FDA Panel hearing was interesting with some really valuable and insightful comments from patient advocates. (And can I just say how refreshing it is to see that advocates were given such a huge opportunity to speak here?!)

Some interesting discussions on the interwebs as the vote was announced (and in the lead up too). Not everyone is as excited by this development, or on the same side of the advocacy fence, with some claiming that they don’t have the same faith in the tech and fear that access to BGL strips will be removed.

For what it’s worth, my experience with this technology – and using it as classified – has been nothing but positive. The accuracy of the system is, for me, undeniable and I trust it implicitly to treat both high and low BGLs without doing a confirmatory blood check.

And I have also written before that I have used my CGM ‘off label’ for some time – even before the G5 – and am confident in saying I know I am not the only one. This seems like an example of the regulators finally catching up to the reality. Welcome to the party, guys!

More about the FDA vote here.

GONG FOR ED DAMIANO

Congratulations to Ed Damiano who was awarded Boson University’s Innovator of the Year for 2016.

Ed was recognised for his work in developing the iLet Bionic Pancreas.

More here.

WHAT THE HELL IS #OPENAPS?

Someone asked me this the other day – actually using those exact words. I bumbled my way through an explanation and after about 60 seconds remembered THIS piece by Dana Lewis.

Have you had a discussion about this with your (or any) HCPs? And if so, what have they said? Most HCPs here I have spoken to either do not know about it at all, or are very dismissive of it.

It seems that there are a lot of people in the DOC who have kept across the ‘movement’, but not a whole lot of break-through in more traditional corners. As is often the case, I suspect that the way, it will be PWD who drive that.

IN MELBOURNE?

Check out this tech event: Translating type 1 diabetes technology into the everyday. It’s free and there is lots on the agenda.

Saying farewell to one of our own

July 20, 2016 in DOC, Peer support, Social media | 5 comments

Last night’s OzDoc tweetchat was a beautiful tribute to someone who has been part of the OzDOC community pretty much since it started four years ago. Tony, better known as @EatYourMeter, passed away last week, and Kim from OzDOC knew that we would all like to remember him together in our weekly chat.

I didn’t know Tony all that well. Our interactions took place mostly on Tuesday evenings between 8.30 and 9.30. He always provided a compassionate and thoughtful voice to the discussion. Tony lived with type 2 diabetes, and I learnt so much from him because he frequently reminded us that our type 1 perspective (which is, for the most part, the voice of the online community) did not necessarily mirror his experience.

A couple of times he gently pulled me up on some dismissive comment I made about ‘just eating something and giving insulin to deal with it’, with a reminder that not everyone has the ability to do that – not everyone uses insulin! He was never aggressive about it – there was no SoMe outrage in his approach – just a friendly nod to remembering that we all are navigating this diabetes road in different ways.

Tony was very good at noticing what people were interested in and sharing information that he thought they might like. Early on, he picked up on my word nerd tendencies, particularly my love of collective nouns and every now and then, he would tweet me an obscure collective noun reference that would inevitably delight.

Last night, as a group, we remembered Tony. Kim led us through a gorgeous chat where we shared memories of our on- and offline encounters with Tony.

OzDOC started four years ago after three of us – Kim, me and Simon (@STroyCrow) – decided that it would be a good idea to have an Australian-focused chat because we felt that there were particular issues that were of interest and importance to Aussies with diabetes. That was the idea, anyway.

And we were right. But what has happened is much more than that. The group grew to more than just a group of strangers on Twitter coming together for an hour a week. Friendships were formed and many of these friendships moved outside the world of Twitter.

Simon and I have stepped away from coordination roles, but Kim has taken the group from strength-to-strength and her work has meant that a tight-knit, supportive and respectful network has formed. The term used to describe this is #dlove and #dlove is thrown around generously.

Last night, we said good bye to one of our own. I, for one, am so glad to have known Tony, and am terribly sad that he will no longer be a voice in the OzDOC community. But I know that while we all feel this loss, we will not forget Tony or his compassion. He will always be part of the OzDOC world.

#RIPEatYourMeter

Interweb Jumble #16

June 8, 2016 in Conferences, DOC, Health, Real life, Social media, Stigma | 2 comments

My head is full of lists:

Packing list
Travel checklist
Work to do list
Hug-the-kidlet-a-million-times-before-we-leave-her-for-three-weeks list
Diabetes-supplies-for-three-weeks-away list

And a list of great things I’ve seen online lately…

PLAID

Do you read PLAID – a research journal with a focus on people living with and inspired by diabetes? If not, you should. Why? Because it’s awesome!

Here’s the link to the latest edition. I’m really proud to have contributed to it because it is (as already mentioned) awesome, and this edition is all about the patient perspective. I sit very comfortable in there!

Unspeakably Wonderful

A new movie about Banting and Best and the discovery of insulin is hoping to be made by UK production company AngryMan Pictures. Details for how you can contribute to their crowd funding campaign are here.

Diabetic Living online

The Australian edition of Diabetic Living magazine has relaunched its website with a gorgeous new look. Check it out!

Totally (dia)badass

Get yours here.

Take 5 minutes…

…and read these great blog posts that have been recently published:

Anyone thinking of starting on an insulin pump and wanting a front seat view into what it’s all about should jump on board Type 1 Writes. Frank is a couple of weeks into his pump start and is sharing lots about what he is learning. I’ve been pumping for over 15 years now so have completely forgotten about dealing the challenges and successes of starting pump therapy.
Lots of posts coming in from people who were at #DXSydney, sharing their experiences of using Libre. This post listed all the people who attended with links to their blogs. Have a read and share your experiences too.
The Grumpy Pumper is a man of few smiles and, it would appear, few blog posts. Here is his first blog for the year. Pop by and leave a comment suggesting he blog more. Then it won’t just be me nagging him!
Awesome pics in this blog from Scott from Rolling in the D. He hacked his Dexcom and this is what it looks like on the inside!
Why do we need online communities? Anna from Glu gives some reasons here. And she’s right on every count!
Also from Anna, this profoundly moving and brave post about her recent pregnancy loss. These stories need to be told. Thank you, Anna, for sharing yours. I am so, so sorry for your loss.
This one is not a blog post, but a podcast. Stacey Simms produces some awesome podcasts over at Diabetes Connections. Do check them out!

Finally, if you’re looking for some more diabetes blogs to read, healthcare social media guru, Marie Ennis-O’Connor, has curated this list for you. There are 50 blogs to choose from. Get comfortable. Get reading!

Myths be gone

Team Novo Nordisk are doing awesome things to dispel myths about diabetes and address the issue of stigma. This latest video is terrific. Watch. And share. Share. Share.

Off to NOLA

It’s that time of year again. The American Diabetes Association Annual Meeting kicks off in New Orleans at the end of this week. I’ll be there, frantically tweeting.

I hit the road – well, air – tomorrow, so I’ll be out of touch for a bit as I embark on the nightmare transit. But I’ll be mainlining iced-coffee and beignets to keep awake and get in with it all.

Follow along at #2016ADA for the latest happenings in the world of diabetes.

New Orleans = Dr John. So here you go!

Owning our space

June 7, 2016 in Communication, Diabetes, DOC, Engagement, Healthcare team, Peer support, Real life, Social media | Leave a comment

Twitter is a great source of discussion and yesterday this tweet from a diabetes consultant in the UK certainly did start an interesting conversation that had me thinking.

I should point out a couple of things before going any further. The tweet, asking if lack of guidance in social media is a concern, was in response to a tweet from someone else who shared a post from a Facebook page about insulin omission for weight loss. This is a very serious issue – one that I have written about here, (and elsewhere), and worked on a lot in the last decade or so.

Also, the consultant was absolutely not suggesting that social media is a ‘bad’ thing, and he is actually an advocate and user of online platforms, so this is not about the individual. It is about the issue at large.

Obviously, I am a huge fan of social media. Apart from finding online – and more broadly, peer – support an important part of my own personal diabetes management, I have built a significant part of my career extolling the benefits of online connections and the value of sourcing information and support from others living with diabetes.

The changing landscape of diabetes information and support over the last ten or so years has been significant. With more and more available online, and more and more people being online, there has been a real shift from healthcare professionals being the keepers of information and deciding what people with diabetes SHOULD know to a more egalitarian framework from which to source what we need.

While some may believe this to be the end of civilisation as we know it, (dramatic, I know), I consider this change terrific, because instead of having very controlled and conservative information on offer, there is now a veritable smorgasbord of material – and knowledge – from which consumers can pick and choose. Personally – I love being able to do that. Hearing personal experiences and picking up tips and tricks about day-to-day life with diabetes contribute to me making decisions about how to manage my own condition.

One of the suggestions frequently made about how to safely use SoMe is for it to be better moderated. My argument is that the power and value of SoMe platforms is that it is not moderated. Being free to share my ideas and experiences without fear (or perhaps care?) of judgement is not only useful, but also cathartic. And getting feedback from my peers often provides a different lens through which I can view a situation. Much of what I have learnt would not be found in the pages of a textbook, or offered in the office of a HCP. And that’s fine – there are other very valuable and important considerations that are shared in that context.

The idea of moderating online support – or any peer support, actually – is about control. It can be packaged up into a nice parcel of ‘protecting’ the person seeking the information, but that is not only patronising, but also incredibly demeaning. There is enough of that going on in more traditional settings – peer support is where there is freedom from that control – and a freedom to explore different ideas.

For me, peer support has always been about finding my tribe and learning from them. It has been about finding a source of sustenance and care that makes me feel better about my situation. It’s never been about replacing or substituting what I get from my HCPs.

So what is the role of HCPs in our support space? My belief is that it is a place for them to learn. There are times that it may be appropriate – and even encouraged – for HCPs to step in and share. On Facebook, one of Australia’s leading CDEs frequently comments and adds to conversations in closed diabetes groups. Her professional advice is always spot on – never judgemental – and her personal perspective (she has diabetes herself) shows just how it is possible to blend the ‘What-I’m-told-I-should-do’ with the ‘And-this-is-what-works-in-real-life’.

But not everyone who wants to be involved in this space has diabetes, nor should we expect them to. But I think for me, I have a very clear understanding of online and peer support works – and what everyone’s role is. When this works well, it works because it is being led by PWD; they (we!) are the ones driving the discussion and the focus. It’s not dangerous. We don’t need guidance. Because it is our space and we own it.

What peer support means to me,

Interweb jumble #13

February 16, 2016 in Awareness, Health, Research, Social media | 4 comments

It’s gloomy in Melbourne today. I have tights on for the first time in months and my hair is now frizzing thanks to the rain I was caught in as I ran next door for a coffee. (The silver lining in all of this is that there is fabulous coffee right next door to my new office. Also, extra silver lining is that I can see the weather out of my beautiful window. The not-so-silver-lining is that I am reminded that I am fool, because window = seeing rainy weather and yet I still forgot to take an umbrella…)

So here are some things that are keeping me either amused, happy, annoyed, interested, fascinated and heaps of other things too!

Roses spared and children saved

Today, the Spare A Rose Facebook page announced that 376 children would be benefitting from people’s generous donations this Valentine’s Day.

It’s not too late to make a donation, or even consider making a monthly donation throughout the year. AUD$6 each month equals a month of insulin for a kid who would otherwise not be able to afford it.

While this was the focus of our Valentine’s Day, there was still a lot of baking. Because I love a heart shaped cookie. Or giant brownie. And sprinkles.

Still the wrong name for this week

I said it last year and I maintain that the Dietitians Association of Australia have got it wrong naming this week ‘Healthy Weight Week’.

I think that the name misses the mark because it focuses on weight and not health. The overall aim of the week is to encourage people to cook more at home to achieve a healthy weight. Here’s just a little of the conversation with the DAA (after they read my post last year) on Twitter:

I think that this really does a disservice to the role of dietitians in healthcare. I am of a healthy weight, but have benefitted from the expertise of dietitians in the past.

The name of this week turns me off actually wanting to participate in any way, even though there are some terrific initiatives. What are your thoughts on this one?

In the genes

Why do some people develop diabetes-related complications and others don’t? We’re told that ‘control’ is the reason, but we also know that some people develop complications, despite years of what is considered ‘good control’ while others who struggle to reach targets don’t.

This study’s findings suggests that particular genetic variations are involved in the development of retinopathy and nephropathy.

Things I wish I knew

I learn new things about diabetes each and every day. But how much easier it would have been while navigating this annoying bloody path to have known stuff earlier on. Diabetes UK has released a new book, 100 THINGS I WISH I’D KNOWN ABOUT LIVING WITH DIABETES, which includes information collected from over 1,000 people with diabetes with input from clinicians. The final 100 were selected by people with diabetes, (nice engagement there!), who chose the tips they thought most useful.

Oh – and while talking about Diabetes UK: Happy Birthday! They turn 82 years old this week.

New (to Australia) Tech

Looks like Australia is about to catch up to our friends in the EU who have had access to Freestyle Libre Flash Monitoring. The Flash website went live this week. More details – such as cost and release date – are yet to come, but you can register your interest. Have a look and register your interest.

And while we’re talking new tech in Australia, a couple of weeks ago, the Aussie launch details of the Dexcom G5 were announced. You can download the app (iOS only) which is already available from the App Store, although you won’t be able to use it until you are hooked up to a G5. The App has the ‘Share’ capability which means that you can (just as it says!) share your data with others.

Rock on

Last week, I was sitting at the front of our house, enjoying the sunshine and my day off, and listening to Live Fast, Diabetes, the new song from Adelaide punk/rock band, Grenadiers.

A very crotchety woman walked by, stopped as she heard the music, and scolded me with this nugget of wisdom: ‘You’re too old to be listening to that noise.’

Yeah, we know

Science: ‘Apparently BGLs are lower in warm weather.’

PWD: ‘Ah, yeah. We know. We’ve known for ages….’

Love it when evidence catches up!

And finally….

It’s Tuesday. Do the #OzDOC tweet chat! Tonight at 8.30pm AEDT.

Guest post – The Party

October 27, 2015 in Diabetes, Guest post, Peer support, Real life, Social media | 2 comments

Over the weekend, my Facebook friend, Brad Slaight, shared a story that got me thinking. He summed up perfectly the power of connections and the value of speaking with others sharing our experiences.

I’ve not met Brad. We know each other only through social media. He is a funny guy – in fact pretty much all of his posts make me laugh out loud. You can read all about him, and the ‘Diabetes Hero Squad’ here.

I have read this piece several times and each time I am struck by just how the family in is story would have walked away from their encounter with Brad feeling relief, support, less isolated and less alone. It is how I feel whenever I connect with others living with diabetes.

Brad has kindly given me permission to publish his post here. Thanks, Brad!

I’m always interested in meeting another person with diabetes and after the secret handshake I enjoy listening to their story, their struggles, and their methods of control. Even with strangers it is always an immediate bonding because we are conjoined by a common life threatening, daily maintaining condition that cuts through the awkward veil of trust.

But tonight it was different. I went to a party at a beautiful home in the Pacific Palisades. An upscale community near the ocean with homes that in the Midwest would be expensive, but here in Los Angeles you have to be in the top 1% to own. This party was catered, valeted, and lavish.

I never feel out of place at these kinds of things even though my socio-economic status is not quite on the same level with the majority of the other guests. But since I am in the entertainment business I usually fit right in and can charm my way past any portfolio flaws. Money and power does not always mean personality. I’m pretty gregarious and make friends easily and tonight was no different. Flitting around from one group to another I came upon a stunning couple who looked like they just stepped from the pages of Forbes Magazine. Young Republicans I thought. Well groomed. Fashionable. Rich.
I planned on walking right past them because I saw nothing in common. And then, the woman grabbed my arm.

“You’re Brad, right?” She asked. A wave of paranoia came over me. What had I done? How did she know me? What did she want? I made some lame joke about not being Brad Pitt and she forced a laugh but I could see some unexpected pain in her eyes.

“I don’t mean to be forward,” she continued. (Forward? Who fucking talks like that, I thought to myself) “Shannon told me you have diabetes.”

Oh my God, I’ve been outed. As if I really care. But why was she asking me this? I would have preferred that she said something like, “You’re a comedian, right?” or “I recognize you from TV” or anything else that would be complimentary. I don’t mind people knowing I have diabetes, but it’s not really what I want to be known for?

The next thing that happened completely took me by surprise. She told me that their 7 year old son was diagnosed with Type 1 diabetes two weeks ago. This was the first time they had been out of the house at night since then. And they had to force themselves to come to the party even though they wanted to stay home and hover. Immediately they were one of us. Diabetes – the great unifier! They were in the club. I understood their pain and at that moment I also felt it because it hit me in the gut. Seven? Fuck. I was fortunate enough to get it when I was already an adult. Seven!

We talked for the next hour and a half. The rest of the party became an oblivious blur. They listened to me as if I were Yoda as I told them my story and stories of others who I have known from the D.O.C. They hungered for knowledge about diabetes. Where do they go? What do they do? Why did it happen to their precious boy? When will it be cured? How will he deal with this horrible disease? The same questions we all have had, and many that we still do.

I told them about the usual links and sites they should explore. The JDRF, the ADA, TuDiabetes, and others. But what they wanted to hear most was how I’ve survived for 30 years with diabetes. What do I do? How do I manage? Have I gotten any of the terrible complications they’ve been told about? And it was then that I realized how important all of the diabetes online community has been for me. How important it is to not feel so alone. So isolated. And how terrifying this disease is for those who are newly diagnosed and the people who love them, because it changes their life as well. I told them what I could but made sure to remind them that, even though we all share the same disease, we are all different and finding a good endo is key.

Most of all I told them how important it is that they were scared because that means their boy has great parents who will make sure he gets the best care possible. The fear will lead to knowledge, which will lead to the best kind of advocacy of all. And I told them that they need to seek out other parents who have CWD because they too need to understand they do not have to face this all by themselves.

Next week I am going to have dinner at their house and meet their little boy. I won’t tell him about all the technical stuff. In time, he will learn all that for himself, because he will have to. No, what I will talk to him about is that there are many of us. He is not alone. And I will give him an autographed picture of The Diabetes Hero Squad. I will tell him that he is a diabetes superhero. And I will make sure I don’t cry until after I leave.

I went to a party. I found out about another one of us. He’s seven.

We need to find a cure!

Knock knock

October 15, 2015 in Peer support, Social media | 3 comments

‘Hey love, it’s me…Renz…I’m just out grabbing a coffee, but when I get back, I’m popping in for some insulin. I’m out…long story. See you soon.’

These are the benefits to having a dear friend who just happens to have type 1 diabetes living two doors down. And that is the message I left on her phone the other night (although, because I speak so quickly, she misheard and thought I said I was out of tomato sauce and would be coming to get some – same/same.)

Why was I out of insulin? I thought I still had two bottles. I know I still had two bottles from my last prescription. Except I didn’t, because I left them in the fridge of our AirBnB apartment in Paris. Which I had realised over the weekend and I did order some from the pharmacy. I’ve just not quite made it to the pharmacy to pick up the prescription.

Sometimes having friends with diabetes is great for the practical ‘shit-I-just-ran-out-of-stuff’ reasons. But mostly it’s because of the ‘thanks-for-getting-it-and-not-judging-me’ reasons. Not once did my darling neighbour raise an eyebrow or shake her head or tsk tsk at my disorganisation. She didn’t tell me off or ask me why I wasn’t better prepared. She just went to her fridge, pulled out a vial and said ‘Is one enough?’

My friend Alanna (read her blog, ‘cause it’s fabulous and she is fabulous and I love her!) posted this on Facebook yesterday and it really resonated.

Changing the word ‘internet’ to ‘diabetes’ makes it so true. Most of my diabetes friends live so far away. I’m lucky that I get to see some of them at diabetes conferences, or when travelling for fun, but many I actually haven’t ever met IRL. They may as well be in Narnia or the Enchanted Wood or at Hogwarts! Thank goodness for every social media platform I use to keep in touch with them!

Which is why it’s so wonderful to be able to walk two doors down, knock on the door and have someone there, with matching pump tubing hanging out of our clothes, to save the day. Thanks, Jo.