Today, I gave a talk to healthcare professionals at a hospital in outer Melbourne. I was invited months ago after the organisers heard me speak at another event, and they wanted me to speak about living with diabetes.
As I said in the introduction to my talk, I am dead boring. Plus, I am only one voice. So, to create some balance and some interest, I reached out through Facebook and asked this:
As usual, the online community didn’t disappoint. I had over forty responses and weaved them into my presentation, adding real impact to what I was saying, reinforcing my comments with the comments of others walking a similar path of life with diabetes.
I started by asking the audience a question…
And then I said that I would be talking about life with diabetes. Except, I reminded the audience that life with diabetes was very different depending on where in the world you were diagnosed and that my story is about my ‘first world diabetes’ and I checked my privilege almost as a disclaimer.
I used that point in my talk as an opportunity to speak about those who cannot access or afford insulin and how this is simply, not okay. I could sense the surprise in the room as I said that people are dying because of lack of access.
Then I spoke about what diabetes is to me and here is what I said:
It’s boring and tedious and frustrating.
It’s made me an expert. And that we need our HCPs to acknowledge the hours and hours and effort we put into managing our own brand of diabetes and the expertise we develop from living so closely with this condition.
It’s about humour – because laughing is a tool I use to get through this and that’s okay.
It’s about words, because language matters and sticks with us forever.
It’s about stigma. I asked if they could think of another condition that was so stigmatised and surrounded by blame – and that while we experience it with type 1 diabetes, I said that I believed my brothers and sisters with type 2 diabetes have it so much worse.
It’s invisible – despite the bright blue patch surrounding my Dexcom, most of the time it is hidden away and not on show for all to see.
It’s about people and community and the DOC and the people that are like the air I breathe – without whom I would not be managing at all.
It’s about my family. And then I explained, fighting back tears, that this is the hardest part of life with diabetes for me. I’ve written about it a lot, spoken about it often. But thinking about how diabetes impacts on Aaron and the kidlet breaks – absolutely shatters – my heart into pieces. The worry I cause my parents makes me feel guilty and resentful. And every day I regret the time I told my sister that my life expectancy had been cut thanks to my type 1 diagnosis because I will never forget the look in her eyes indicating the pain I had just caused her.
I answered a couple of questions and then my talk was done. I thanked the audience for listening, stepped down from the stage, took a deep breath. Someone came up to me as I was gathering my bags and said that she learnt more about real life with diabetes in that talk than in all her years nursing.
This is the power of story telling. The comments I read out and shared have so much power in them. We need to keep telling our stories, turning the way we talk about diabetes on its head. It’s not about the numbers, the tools or anything else. It is about people.
Thank you so much to everyone who shared their comments with me on my Facebook post yesterday and today.