Last Friday, I took part in my first Facebook Live chat as part of The Lowdown campaign. (If you’ve not watched the Facebook live chat, you still can by clicking here.) I was joined by former AFL footballer, Jack Fitzpatrick, who has lived with type 1 diabetes for about six years.
Jack and I could not be more different. He speaks a language of sport of which I know barely one or two words. His perspective of the first few years of his life with diabetes are very, very different to mine. He talks about how, thanks to his workplace – and AFL football club – he had a doctor and dietitian working with him every day. He worked out how to fit diabetes into his job with the help of HCPs that most of us see a few times a year at the most.
But there are also similarities. We were both diagnosed as young adults and we had to learn how to manage a very demanding health condition at a time when there is far more fun to be had. On Friday, we spoke about hypos, and his stories made complete and utter sense to me.
The Lowdown campaign is a beautiful story telling initiative. That’s what has happened over the last week – PWD told their stories about hypos and time and time and time again, there were comments from other PWD who recognised that story. We recognised the way our heart might beat faster, or the confusion that heralds plummeting glucose levels. We nodded as we heard about people over-treating, because in the moment, that is all we feel we can, and must, do. We smiled at the silly things we read others do when low, (hello, HypoBoy).
Every time I saw a comment from someone who said a version of ‘That happens to me too!’ I felt tingles. That connection comes only when we feel that we are not alone, that someone understands what we are going through. I get it – it’s why I read diabetes blogs and listen to diabetes podcasts. I’m looking for real life, authentic stories, the lived experience.
As I said in the Facebook live chat, this campaign is a form of peer support. Because that is exactly what is happening – people with diabetes supporting each other, using stories that resonate, make us feel like we part of a tribe, helping us understand that our way of dealing with something is just as legitimate as anyone else’s.
We all do it – we all seek out those that stories mirror our own. That doesn’t mean that we have to think the same way or do the same things or feel the same way. It’s not about there being a one size experience or everyone having the same thoughts and ideas. In fact, the diversity in what we see and read is important because it means that we can find the ones that we connect with most and help us better make sense of our own experience.
Too often, the story of diabetes is told using statistics. That is the way researchers and healthcare professionals and governments talk. But for those of us actually living with diabetes, it will never be about the one in how-ever-many-thousand. We don’t want to hear how the dice is likely to roll or how the numbers keep getting more and more stacked against us the longer we live with this condition. We don’t connect with data, statistics or numbers. We connect with people and to their stories. That’s what we need to tell. And that’s what we need to hear.
2 comments
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March 25, 2019 at 5:43 pm
Cindy
Thanks for this video great to hear from both if you. Everyone with diabetes can relate to these stories. Very comforting .
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March 26, 2019 at 12:34 pm
Rick Phillips
Oh shoot i have great T1D stories. I am sorry I missed. Well maybe next time.
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