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It’s day three of EASD which (allegedly) is in Barcelona. Most of my time has been spent in the cavernous Fira Barcelona conference centre and on Tuesday, I traipsed to one of the far corners for the tenth #docday event. (You can read about previous #docday meetings here and here. And here.)

As always, #docday featured some shining lights of the diabetes community who did a stellar job sharing some of the great work they are doing to support people living with diabetes.

I could do what I usually do and write up all of these terrific initiatives. Or, I could just share this video. For the first time, #docday was streamed live on Facebook so that it could reach a far broader audience. How great is that‽ Brilliant Mona manage the tech and made sure that the stream worked for the whole of the almost two hour event. (The start of the video is around the wrong way, but stay with it because it turns after just a couple of minutes.)

Thanks to Bastian for inviting me to speak again. I am so lucky that he thinks that I have something valuable to say. (This year, I do agree – I spoke about Diabetes Australia’s The Lowdown 2019 campaign and how digital peer support can reduce the isolation many people with diabetes experience.)

So… enjoy the video! I hope you’ll agree that there really are some dynamic people in this community who are truly working to help others. They’re all pretty damn awesome. (You’ll need a Facebook account to watch this stream.)

DISCLOSURES

My airfare and part of my accommodation to attend EASD was covered by Lilly Diabetes so that I could participate in the DOCLab advisory group meeting which took place all of Monday. Another night’s accommodation was covered by Novo Nordisk as I attended their advocate meeting on Digital Health Technologies. While my travel and some of my accommodation costs have been covered, my words remain all my own and I have not been asked to write or speak about any of the activities I attended, or anything I have seen at the conference. As ever, profanities are also all mine.

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Jeez, burnout sucks. And boy, was I feeling it last week. My blog post from last Friday accurately summed up the exhaustion, stress, feelings of defeat and the heaviness I was feeling as I flew back home. I didn’t even have the energy to yell ‘Bullshit!’ during the part of the safety video when the guy claims lies that there is great coffee to be had on the aircraft. That is just not true, Qantas.

Thanks to everyone who reached out – to everyone who Tweeted, Facebooked, Instagrammed, commented, texted and emailed. I did take a few days off SoMe, but when I logged back on, I read absolutely everything that was sent to me, and I am overwhelmed (but in a really good way) by everyone’s support.

I participated in yesterday’s #DSMA chat because the awesome Cherise thought that a community chat about advocacy burnout was a good idea, and as is Cherise’s way, she was right. I learnt a heap about how others manage the inevitable feelings of overwhelm that affect so many of us at one time or another.

I am incredibly fortunate to work in a place that truly values the lived experience.  As I wrote in this piece after the Ascenisa #OzDSMS, my CEO has always not only valued my role in the organisations he has led, but has championed the importance of lived experience. I’m really glad he was able to speak to some of Australia’s most impressive advocates (all of whom he already knew) to continue to explain just how important the work they/we all are doing truly is. I held on to that for a lot of last week and over the weekend too.

But it was the support of those with diabetes that helped me dig deep to find the way out of the dark space; those who understand that special brand of burnout that we feel when not only has our own body done its best to undermine us, but others and circumstances around us pile on, making things just so damn hard.

There is an ever-increasing body of evidence that shows peer support is helpful to people living with health conditions. But there is so much more to why we become parts of these communities than to just improve our health and wellbeing, or to connect with others who ‘get it’.

In these communities, those advocacy efforts we are working on in our own little corners of the world become real and big. Heather Gabel wrote this awesome Twitter thread about frustrations I share with her about how we need to focus on the social change our communities create. I will always need the tea and sympathy, but I also need the connections with those world-changing folks whose drive, determination and dedication help me thrive.

I would be naïve to suggest for a moment that the devastating and crushing burnout I was feeling last week has disappeared. It’s still there, and I suspect it will be for some time, and I’m going to keep taking time out, and stepping back for a little bit longer. But I am far more motivated now, and the crappy things that culminated in feeling overwhelmed are starting to look like blips rather than insurmountable peaks. Thanks to everyone who helped me step back and refocus.

Last week, Instagram got rid of ‘likes’. The company line was that it wants people to concentrate on content shared, rather than its popularity. Sure, Instagram, let’s go with that.

For the platform that is preferred by ‘lifestyle influencers’ (seriously – can you imagine putting that on your arrivals card?) it all seems a little disingenuous, but if not knowing who is liking content speaks to you, then perhaps this is a good idea.

I have a love/hate relationship with Instagram. I have mine pretty locked down and only share with friends and family. I only follow people who make me feel good, or make me laugh. I don’t follow anyone who makes me feel like I am not enough. Or anyone who drinks kale juice for breakfast. These good folks can namaste themselves elsewhere.

If you are connected with me on there, you’ll know that what you see mostly is photos of my family, the coffee I’m about to drink, the cookies I have just baked, and, depending on the season, blossom trees (hello, promise of spring) or jacaranda trees (hello, promise of summer). Plus, there’s diabetes spam…so much diabetes spam.

You won’t see me telling you about my perfect diabetes life though, because my diabetes life is not perfect. And you won’t hear me going on about how grateful I am that diabetes has given me so much, because really, I’m not. And you won’t hear me saying that others have it worse and that I am #SoBlessed, because … well … because #FuckThat.

I wrote once that I despise the concept of ‘At least…’ or ‘It could be worse’. Could it worse? Of course it could! But having a body that does what it is meant to would be a shed-load better!

Positive affirmations are great if they give us hope or something to hold on to. They’re not great if they start to make us feel like we are failing, or feel bad for not always being optimistic and upbeat. Sometimes, diabetes makes it really hard to walk on the sunny side of the street.

I frequently say diabetes sucks (because honestly, I am yet to hear someone tell me how it doesn’t), or that there are days that I truly hate diabetes (because I really, really do). This doesn’t mean that I am looking for someone to throw me a pity party. It doesn’t mean that I think my life is hopeless.

But some days, diabetes is especially challenging, and no number of positive memes or positive self-talk is going to change that.

I am a positive person by nature – annoyingly so at times. I see the good in people and in situations. But I refuse to believe that it is not okay to sometimes admit that my arse has been beaten that day by the health condition that is so difficult to live with, or to privately and publicly say that I truly, honestly, totally, absolutely despise diabetes.

I need the space to have those down days and the bad days and the days where I admit that I am not a superhero. I need the time to snuggle under a quilt on the sofa and watch some trash and not feel all positive or like I can conquer the world.

It is easy to believe that a lot of Instagram diabetes folks are all happy and accepting or grateful to have diabetes. Truly – if they are and are able to maintain that positive attitude all the time, that is wonderful. I’m not those people. I don’t resent them in any way. I just believe it is important to understand that not everyone is able to have that sort of outlook.

Sometimes, it’s not possible to ‘positive’ your way out of a bad diabetes day or try to convince yourself that you don’t hate diabetes, but really do love your body when it feels just so damn broken. And that is okay.

Really – it is okay to not be okay. It is okay for us to not be shiny, happy people* all the time.

What I will say is this: If your hard days are outnumbering the good days, please do see if there is someone who can help. It truly is okay to feel down about diabetes, but when you are feeling that way all the time and it’s affecting your day-to-day life, there is help.

When I find that the scales are definitely tipping that direction, my first port of call is my friends with diabetes. They never make me feel crap for not being positive. They certainly don’t feed my misery, but they do remind me that this is hard and that it is perfectly understandable and acceptable to have negative days. And closer to home, my husband knows that I don’t need a pep talk, or to be told to snap out of it, or a reminder that life could be worse. He tells me that diabetes sucks while passing me some chocolate. Smart, smart man.

I have come to learn the signs of when I need more help than that, and have a great psychologist I can link in with when I need to. I can’t tell you how much this has helped me. One of the first things my psych said to me was that it was okay to grieve my old life, and to feel that diabetes sucked. Being given permission to feel down at times felt like being able to breathe again.

And here’s the rub: knowing I don’t have to be Ms Positivity all the time – and saying just how hard things can be sometimes – actually has made me far more positive in the long run.

*I was talking about this with my beautiful friend Georgie yesterday. She is one of the first people I turn to when I am having a shitty diabetes day and we spend a lot of time just talking about how hard it can be. Her advice is always spot on. Or there is no advice – just an ear and a shoulder and a coffee date.  As we were chatting, I said the thing about it being okay to not be shiny, happy people all the time, when I realised (and told her) that REM reference was from before she was born. Oh, how we laughed and laughed. And then I felt old.

Right here, Georgie and I ARE being shiny, happy people.

The other day, I was standing in a noisy café, waiting for my take away coffee to be ready, not really paying attention to anything, other than a tree I could see that had what must have been Melbourne’s first promise-of-spring blossoms. Suddenly, a loud noise dragged me from thoughts of warmer weather and not needing to wear fifty layers of black to leave the house. The man standing next to me turned his head and I caught him looking at my phone.

‘Your Dexcom is wailing,’ he said to me.

‘Indeed it is, needy little shit,’ I replied, after I got over my surprise at his comment. Usually people just look annoyed at the disturbance.

‘So…you’re one of us?’ I asked him, pointing to the pump I’d just noticed on his waist band.

‘Yep. Hi! I’ve never, ever just come across another person with diabetes in a café or just out and about,’ he said. ‘Have you?’

‘Ridiculously regularly in the last few of months,’ I replied, and told him about the mum of a young woman with diabetes at the airport lounge, the security guard at the airport in Amsterdam who referred to me and my travelling companions as a ‘diabetes club’, the woman talking about Libre in my favourite local café, and now him in this café near work.

‘Maybe stay away from airports and cafes. That seems to be where PWD congregate,’ he helpfully suggested.

At that exact moment, my pump beeped its on-the-hour alert that it was sitting on a temp basal rate.

My diabetes-in-the-wild mate looked at me, his eyes narrowing. ‘Now your pump is beeping. Oh – are you looping?’

I was more than a little startled at that one. The noise my ancient Medtronic makes on the hour is not loud at all – three little beeps to gently remind me that a temp basal rate has been activated by Loop. ‘Wow,’ I said. ‘Your hearing is next level. And yes. I am.’

We did the usual diabetes stat check: length of time with diabetes; age of diagnosis; things that drive us nuts; inventory of our diabetes devices; a couple of amusing diabetes anecdotes. ‘I pulled my pump line out on the door handle of my office today,’ he said. ‘Have you ever done that?’  I laughed. ‘No – don’t be ridiculous! I am a smart and clever and always paying attention person with diabetes. Of course I’ve never done that… And by never, I mean once every couple of months for the eighteen and a half years I’ve been pumping.’

My Dexcom fall rate alert wailed again. ‘I’m ignoring it. Hoping it will go away,’ I sighed. ‘Yeah,’ he said. ‘I’ve been doing that with diabetes for the last 32 years.’

We looked at each other and mirrored in his face was the same expression I knew I was wearing – slight defeat, but also defiance. It’s the default expression that so many of us living with diabetes wear when we are feeling a little over it all.

The barista handed me my coffee, and juggling my phone and coffee and umbrella, I turned back to friend. ‘Lovely to chat,’ I said to him. ‘Always nice meeting one of my tribe.

‘Tribe? Is that what you said?’ he asked.

‘Yep,’ I said, a familiar feeling washing over me: The ease and comfort of talking with someone who absolutely understands. In the place of making our own insulin, we make connections. And I was reminded, once again, how these chance encounters, along with the time I get to spend with my friends who have diabetes, sustain me.

Find your tribe. Love them hard,’ he said. ‘Isn’t that how it goes?’

I nodded and took a deep breath, raising my coffee up to him as I started to leave the café.

‘Yes. That’s exactly how it goes.’

Blossom…

The other night, I cancelled going to a party – a cousin’s kid’s 18th– at the last minute. I seriously never do this. And I absolutely hated doing it.

But I’d had a couple of hypos during the day (Fiasp is absolutely kicking my arse) and I was feeling exhausted. These hypos weren’t what I’ve become used to dealing with (i.e. Loop hypos for me generally look like an alert telling me I’m going to head low, me ignoring it, alert saying I am really about to be low – but not really low because Loop is doing its thing, me having a couple of fruit pastilles, and that’s it). These were the types of hypos that spin me around, turn me upside down and resettle me feeling completely discombobulated. It had been a while.

After the second one, I was so knocked out that I lay down for a bit and ended up getting an hour’s sleep. It was mid-afternoon and when I woke up, I felt no more refreshed.

I contemplated going to the party – I had a shower and started to put on some make up. I looked fine – no different to how I usually look. If I’d gone, no one would have known any different.

Earlier in the day, after I’d already had the first hypo, Aaron had posted a photo of me online. The next day, when I mentioned to someone that I had cancelled plans the evening before thanks to a lousy diabetes day, said ‘Oh. I saw a photo of you online in the morning and you looked great.’

They didn’t mean this in a nasty way, or that they thought I had just cancelled because I couldn’t be bothered going out. It was just a comment. And they were right – I looked exactly the way I would look any other weekend morning when I was having breakfast with family and friends

The next day I was messaging a friend with diabetes and mentioned I’d cancelled my plans at the last minute the night before. ‘Oh babe,’ she said. ‘How’s the hypo hangover?’ and then she detailed all the things that are the inevitable fallout of nasty (and nasty-ish) lows; the things I’d not mentioned to others who’d asked after me.

I told her she had nailed exactly how I was feeling. I told her what had happened, and I didn’t hold back, and I didn’t minimise it. I knew she wouldn’t worry or be unnecessarily concerned or wonder if it was anything more than what it was. I knew she would know – because those feelings are wound into the DNA of diabetes and the people living with it.

Plus, she would know just how I felt about the last-minute cancellation, and feeling that I’d let people down.

‘So, I bet you’re feeling even more crap about cancelling that about the hypos now, right?’ she said.

I laughed. ‘You know it!’ I said to her

‘Don’t you sometimes wish that when you were having a shitty diabetes day it couldn’t be covered up so easily with lipstick and a smile?’ she said, hitting me right in the guts with that comment.

Because she was so right. Lipstick and a smile. That’s every diabetes day. It’s there when I’m feeling great and all is going well; when diabetes is behaving and not impacting on me much at all. And it’s there when I’m feeling crap and diabetes is casting far too large a shadow over my existence for that day. But for most people, they couldn’t tell the difference.

Managing this hypo with iced coffee…and lipstick and a smile.

Spending time surrounded by diabetes can be overwhelming and that is never more so than at a conference like ADA. It is huge – there are thousands and thousands of people, an exhibition hall with stands from device and pharma companies that messages about diabetes that are all tied up in statistics and words (and not really about people), and for every talk that shares hope and promise, others that focus on despair.

But it’s easy to step away from that – even if just for a moment – and turn to a member of your tribe. Because then…

…not once did I feel despair.

…not once did anyone pass judgement about another’s diabetes.

…not once did anyone make me feel afraid.

…not once did anyone attribute blame or shame.

…not once was anyone expected to explain themselves.

…not once did I feel stigma.

…not once were the words spoken anything other than real and authentic.

…not once did someone ask another person about their glucose level or A1c.

…not once did someone suggest that anything to do with diabetes was someone’s fault.

…not once did I feel overwhelmed or overcome.

…not once did someone make me feel that I was not enough.

…not once did someone look at another PWD to suggest that they were failing.

…not once was fear used as a motivator.

…not once were we made to feel sorry for ourselves.

…not once did my life feel like it should be measured in nothing more than numbers.

…not once did we call each other inspirational for just living with diabetes.

…not once did anyone do anything other than cheer another’s efforts.

…not once did anyone overreact if they noticed another PWD was low.

…not one did I feel that I was a burden.

…not once did I feel that I had to be a superhero.

…not once did I feel alone.

…not once did anyone demand that their way of doing diabetes was the better way.

…not once was diabetes the overall focus.

There are times that diabetes does its best to make me feel a burden, or that I am simply not enough. But not once – not ever – when I am around people like this do I feel anything other than whole.

Find your tribe

Find your tribe…

Whoa – fast jet lag and iced coffee-fuelled talking….

DISCLOSURES

I am attending ADA as part of my role at Diabetes Australia. My economy flights and accommodation have been covered by the organisation.

As a parent, I learnt there is this magical thing that happens when you are in a really crowded and noisy place with your kid/s. Somehow, over the roar of the crowd, you can always hear your kid if they are calling out to you. It’s some sort of sorcery that blocks out the din, and allows your kid’s annoying angelic voice to still be heard.

That kind of happened to me the other day when I was sitting in a café minding my own business, working away and savouring the always excellent coffee at my favourite local. There was a table nearby that seemed to be made up of a mum, twin two or three-year-olds and grandparents. They were talking loudly, the kids were playing and talking over each other. They were a little rowdy, but it made no difference to me. If you want to work in a café, you have to be prepared for the noise! I wasn’t listening to their conversation – I was focussed on what I was writing. I couldn’t tell you what was being said.

Until I heard the word ‘diabetes’ through the racket, clear as a bell. I looked up, to hear the rest of what the mum was saying ‘…and it’s like a sensor you wear – I think on the back of your hand – and you just run something over it and you get your result. I want to try it so I can stop having to prick my fingers.’

I have had a statistically significant number of diabetes in the wild encounters recently. It looked like I was about to add another one to the tally.

‘Hi,’ I said. ‘I have diabetes. I also am a diabetes advocate. I think you’re talking about the Freestyle Libre. It’s a small sensor that you wear on your upper arm, and you scan your smart phone or other reader device over it to see what your glucose level is. I wear a continuous glucose monitor. That transmits my glucose readings to an app on my phone. It’s different, but kind of the same in that it limits having to prick your fingers.’

We chatted for a bit and then a friend joined me. She was actually wearing a Libre sensor, so (after ordering her coffee) she did a quick show and tell to so the woman could see how it worked. (For the record, not all my friends have diabetes. This was a fluke!)

I passed on my contact details to the woman and encouraged her to reach out and get in touch for a chat. Because that’s what we do. That’s how this community works.

I’ve been thinking about our diabetes community a lot recently. After being in Manila (please read my disclosures on this post), I have felt that strong pull towards people who gather strength from each other because of our shared experience.

One of the sessions in Manila addressed some community initiatives that have really relied on that community spirit, and we talked about why they work. Grumps and I led the sessions and discussed Spare a Rose, #TheLowdown2019, and #TalkAboutComplications. These were examples of different ‘campaigns’ that all had similar results.

Spare a Rose is owned by the diabetes community and it is for the diabetes community. It works because no individuals own it – that’s not how it works. You want to support it, great! Do your thing and get the word out. No one directs what it looks like apart from encouraging others to reach into their pocket to support Life for a Child and save the lives of children living with diabetes.

#TheLowdown2019 is a campaign out of Diabetes Australia (disclosure: I work there), but it isn’t about us. It is us creating a platform for the community to share their stories and come together. What we heard as people shared their hypo experiences was others connecting to those stories.

And #TalkAboutComplications provided an opening statement and ongoing support and encouragement for the community to talk about a topic that is often seen as taboo, and filled with blame and shame.

As I wrote in this piece, the group in Manila was already a community, even if they hadn’t quite started calling themselves that yet. And since then, they have found their voices – loud, passionate, smart voices – and are showing what community does. They support each other; they build each other up; they share what they know.

We use the word ‘community’ a lot in diabetes. We talk about it in terms of face-to-face groups, we talk about it when it comes to meeting others with diabetes and welcoming them into the fold, and we talk about it in terms of our online connections. Some people struggle to find just where they fit in there, but I genuinely believe that there is a place for everyone. You just need to find the tribe that makes sense to you and your perspectives of diabetes.

I have written and read a billion words about why community matters, and how, when it’s right it can be an absolute saviour. When I try to explain the value, it’s easy to get lost in superlatives, and sickly sycophantic gushing that start to sound empty, so I often show this video and throw the hashtag #Simonpalooza at people, making them promise me to look it up and learn about it. Now, I can add the story to what happened in Manila last month.

I became part of a new community when I was in Manila, and those advocates became part of our bigger one. I feel that their experiences add to the diversity and the experiences of the DOC. Their stories start to meld into the fabric of other stories, and I so love that we now get to hear them too.

When those diabetes in the wild moments come my way, I can’t overlook them. I suppose I could have ignored what the woman in the café was saying and let her work it out on her own. But why would I do that? I have benefited from the no-agenda-other-than-wanting-to-connect attitude of many in our diabetes community – honestly, I benefit from it every single day. There is no way that I could do anything other than say ‘hi’. And connect.

(Video of Day 1 of the Manila workshop made by one of the advocates, Kenneth.)

Last Thursday morning, still wracked (and wrecked) with jet lag from having just returned from ten days in Europe, I boarded a flight to Manila. I would be co-facilitating a workshop for people with diabetes from across the Philippines about how advocacy, community and engagement. If I’m completely honest, I had no idea what was in store for me.

I knew that the PWD who would be attending had all been through a diabetes camps program in the Philippines. They were all young and very eager to step up as advocates. They were the reason the workshop was happening – they realised it was time to elevate the PWD voice in advocacy efforts in their country and they wanted some help in doing just that.

And so, the idea of a workshop was conceived, and the two facilitators were flown in from opposite sides of the planet to pull it all together. Enter me and the Grumpy Pumper (who for once had to travel further than me and was more jet lagged than me).

As the facilitators, we were there to talk about some examples of effective grass roots advocacy, talk about how engagement with other stakeholders is important, and highlight just why the voice of those living with diabetes is critical when it comes to lobbying. We had an vague outline of just how we thought the workshop would run, but we really wanted to ensure that the attendees could shape it the way they wanted, asking relevant questions and walking away with information that would help them.

Once the workshop started, it was very, very quickly apparent that we already had a thriving, dynamic and enthusiastic community in the room. They just weren’t seeing themselves that way. Over the course of the workshop, we saw the ten PWD realise that their own stories and voices are important and have real currency, and they are an unstoppable force when they came together. If ever I needed a reminder of the power of community, I’d have found it there in that room in Manila!

There will be a lot more about the weekend workshop in coming days. I’m still getting my head around it all and am not really sure what to write just yet. It may take me some time. What I do know is that the DOC now has some new voices. Their perspectives will be different to those we often hear about, and that diversity is always good in a community.

So, while I’m getting my words together, get to know these amazing young advocates. They’re on Facebook here; Twitter here; and Instagram here.

 

DISCLOSURES

Novo Nordisk covered costs for the advocacy workshop. Grumps and I were invited to facilitate the workshop as part of our involvement in the Novo Nordisk DEEP Program. Novo covered by flights, accommodation and ground transfers.

I’m back on deck at work today after a whirlwind ten days in Europe for meetings and a conference. I started in Amsterdam, then flew to Florence and finally flew to Copenhagen (via Pisa). Those ten days were busy, long and interesting. And, perhaps best of all, packed full of others from the diabetes community.

Spending time with others living with or around diabetes is restorative. I know I get jaded at times, and burnout – in all its forms – takes its toll. I’ve been feeling a little advocacy burnout lately, and that has the tendency to make me feel that I need to step away from diabetes for a bit. Plus, I wasn’t sure if I could be bothered with the inevitable onslaught that comes when these sorts of activities happen.

Instead of hiding away (which is what I half wanted to do), I got on a crowded plane to Europe to spend almost two weeks ‘doing’ diabetes advocacy in different forms. By the time I got to Nijmegen – an hour and a half out of Amsterdam – for HypoRESOLVE I was already feeling better. I felt the darkness of burnout slip away as I sat in meetings, speaking up and providing PWD input into the project. And there, alongside me, were others living with diabetes. We leaned into each other, stepped back so another could take their turn, and supported each other to feel comfortable and relaxed. We reminded each other that there was a reason we were there – because people with diabetes must have a seat at the table and that we must be heard. We lived, breathed and ate ‘Nothing about us without us’ throughout that meeting and by the time I boarded a hideously early flight to Florence for the next meeting, I was raring to go – further boosted by a diabetes in the wild encounter.

Two days of meeting in Florence with friends and peers from the diabetes community talking about our experiences in the diabetes community continued to see my mojo return. We spoke about difficult topics, how the community works best and the place everyone has in there. I was reminded that the community ebbs and flows, and that it is not static. Sometimes, that rut that I find myself in means I forget that all communities change and grow and develop. This is actually a positive, because as it shifts, more people come in, some people step away (for good or just a bit), we reconfigure how it fits us, and diabetes makes sense in new ways.

Some much needed downtime meant that I could reconnect with peers and feel myself being completely and utterly filled up in a way that only comes when surrounded by people who get diabetes and this weird diabetes space. We don’t all have diabetes – we represent different corners of the community, but we know diabetes in a way that is particular to those who live close to or with it. Our dinner after the second day of the meeting saw us finally able to breathe and take some time out of diabetes speak, and instead revert to a steady flow of laughs (shrieks, actually).

The next day, a friend from Italy just happened to be in Florence. We met up and I met her family, including her son who has diabetes. As we drank coffee just over the Ponte Vecchio, diabetes was spoken about a bit, but mostly, I got to learn about this young man who is clearly going to take on the world. He is smart, funny, delightful and inquisitive. His questions about Loop were intelligent – far more so than anything I would have thought to ask before I started using the tech! I hugged his mum as we said good bye, noting that she had just introduced someone else to our tribe.

By the time I arrived in Copenhagen (at 2.30am thanks to high winds in Florence, a bus ride to Pisa to take a diverted flight and some first-rate Italian disorganisation), I was exhausted, but at the same time felt more enthusiastic about the diabetes space than I had in some time. The next morning when I arrived at the conference venue, I was ready for a packed day of speakers, and to do my own presentation in the afternoon. I looked around and saw that there were a number of people living with and around diabetes that I knew, as well as a whole lot of new faces in there. The event was for HCPs, but as always, those of us with a truly personal connection to diabetes searched each other out. I met members of a support group known as ‘Diabetes Dads’ who meet regularly to speak about their kids with diabetes. They were there to support their friend who was speaking about his Looping son.

At lunch, I sat at a table with two PWD I knew. Two other people joined us and we quickly found out they too have type 1 diabetes. The conversation flowed – we understood each other, and our shorthand of diabetes speak easily fitted into our stories. We nodded as we heard stories that sounded familiar, even though they were being told by someone from another country who, until we sat down with our overflowing lunch plates, we had never met before. One of the women at the table had asked during an earlier session about how to wear the devices required for Loop, and I pulled out my RileyLink and showed it to her. She held it and weighed it in her hands. She’d wanted to know how to wear it with a fitted dress and I was able to show just how easily I could tuck away everything, even with the straight dress I was wearing for the day.

We may have all been there because of an interest or curiosity in DIY diabetes, but there is far more than that to draw us together. Just like as at the earlier meetings. As always, diabetes brings us together, but it’s far more that keeps us that way.

By the time I boarded the Dreamliner at Heathrow, all traces of burnout, and questions about how to manage in the sometimes tricky maze of diabetes community had completely subsided and were replaced with the reminder that when we find out tribe and surround ourselves with them, the burnout is replaced by feeling supported. And that’s how and why we show up. We do what we do, we show up, we speak up and we try to get stuff done. Ten days of that and I feel so much better. Which is good. Because as it turns out, those ten days are just the start …

DISCLOSURES

My flights to Amsterdam and accommodation while in the Netherlands was covered by HypoRESOLVE. I am on the Patient Advisory Committee for this project. My flight to Florence and two nights’ accommodation were covered by Lilly. I was in Florence for a DOCLab Advisory Meeting. My accommodation in, and flight home from Copenhagen was covered by the Danish Diabetes Academy. The Academy invited me to speak at their Diabetes DIY Movement conference.

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