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.)
Diabetogenic 