Life is a process of humbling 💌

Notes on the power of community.

Last week’s note was a diversion from regularly scheduled programming, to speak to the diabetes community (and hopefully a few of you curious creatures outside of it), about the new insulin pump system that’s shifted life as I’ve known it for the past 28 years, for the better.

I have continued to marvel at how much less work I need to do to manage my type 1 diabetes now that I’m on what’s know as a hybrid closed loop system. I’m still working with it, alongside it, and the alarms are still very much letting me know when it’s up against miscalculated carbs or erroneous hormones.

But my diabetes brain, which I do consider to be the capacity of an entire normal brain squeezed in alongside actual normal brain… just feels so much lighter. It’s like it’s in vacation mode, with a do not disturb sign on the door. It’s alive, it’s functioning, but it’s… chill. It’s decompressing a little, for the first time in decades. 

I wrote that note because as someone living with type 1 diabetes, who regularly speaks to others with type 1 diabetes, I know what this technology means for our futures, for our lives. It’s no overstatement to say that it’s already redefined mine, and therefore the possibilities within it. But that was the first piece I’d written about diabetes for a while. I first started publishing thoughts about my insulin laden life some 15 years ago through a blog, to try and make sense of my own condition after years of not really being friends with it, myself, or my body. 

The response to last week’s article took me back to that time, sat in my room evening after evening in my shared house in Hull where I was working as a fledging radio journalist, words flying out of my fingers in a bid to keep up with the thoughts generated by this new focus I was giving my condition - thoughts I hadn’t even realise I had, let alone taken time to distil. I was almost possessed with fervour – I wrote a post every single day for the first fortnight, but it was all just as an online diary - the blog was for me, mostly, to document the learnings on my new journey as I vowed to take responsibility for my own body and my own health, but unwilling to accept that doing so meant not being able to live the fullest life possible.

Something magical happened from the very first time I hit publish. People started to virtually appear, nodding fervently with me. Dozens and dozens and dozens of people who wanted to live this life too; who wanted to confirm or explore the idea that acceptable and conscientious diabetes management didn’t mean sitting in a plastic box, wrapped in bandages, being spoon-fed and only being allowed to enter controlled areas between 18 and 20.2 degrees centigrade between the hours of 8am and 4pm. Who had passions and hobbies and rewarding jobs and amazing children and just wanted to give themselves the best chance, without compromising on what it meant to be truly alive.

Through that blog, through those words, I connected with other people living type 1 diabetes for the very first time. 

And it was the first time I realised I wasn’t alone. 

For the 13 years up until that point, my diabetes world had consisted of me, my family, and one friend I’d met working in a shoe shop as a teenager who also lived with this unruly chronic condition. I knew there were others out there, but it really didn’t feel like it. I didn’t know them, I couldn’t see them, I didn’t read stories about them (except that one book my mum bought about Sir Steve Redgrave, but an Olympic rower I ain’t) and I definitely, definitely wasn’t able to connect with them. 

Then, after 13 years in the dark, literally overnight I saw lights being switched on, not just all over the country but all over the world. People waving at me, reflecting my words back at me and saying, ‘I’m here! I get it! I feel like that too!’

It was astounding and unbelievably humbling, but that is life if you are to believe the title of this note, which happens to be one of my favourite Malcolm Gladwell quotes. Being humbled is a continually important thing. Back in 2009 there were message forums and there was Facebook in a different form (poke, anyone?), but no Instagram, and no real sense of community in the way that there is now - and certainly not when it came to type 1 diabetes. The strength of the emotion in the responses was intense, because as I expressed last week, carrying type 1 diabetes through life is intense. It was quite overwhelming, just as it was last week, 15 years and hundreds of thousands of words later, to connect in this way. To connect through something that was such a huge part of my life, and yet one that I’d never really spoken about. To realise the potency that words have to create bonds with people you’ve never met, to bring people together via the processing and articulation of your own lived experience. 

I didn’t and don’t wear diabetes as my personality, because it isn’t my personality. It’s something that walks alongside me, occasionally dragging me to places I don’t want to go, and never ever leaving me be. It’s not who I am, although it has immeasurably shaped who I am. And by telling authentic stories through this very lonely adventure, I’ve found a community that I’ve continued to learn from, that has continued to humble me as I’ve continued to try and show up, no longer with a blog but rather wonderfully through my type 1 diabetes podcast - and has continued to remind me, in no uncertain terms, that none of us is alone.

Just like any other story, from Shakespeare to Disney and everything in between, the power of sharing in the context of something as sexy and appealing as chronic illness is taking these experiences, challenges, triumphs, passions, and making them mean something to someone else – whether that be because of technological advancement, or by simply laughing at the absurdity of it all. Allowing someone to see pieces of themselves through what you create, or to give them permission to feel their feelings, is magic to me, and it’s curious that as a person who’s never truly quite been able to figure out where I fit, I’ve spent my personal and professional life creating (virtual) communities; making others feel like they belong somewhere, that they’re part of something, that they’re not alone. Because we really are all connected, somehow.

So this is simply a reminder to you of that, and a thank you for reminding me that words are powerful, that vulnerability is important, that people want you to win because people are good, and people are also going through a ton of stuff that no one sees. That’s all relevant to all of us, whether you live with type 1 diabetes or not.

Connection is important, it’s healing, it’s life-affirming and mind-expanding - whether it be through a chronic illness, through your favourite TV show, through raising children, or through a new hobby.

Through good and bad, community is everything.