I tell my story for many reasons – most of them selfish. Plus I’m an over-sharer and I like the sound of my own voice (in my head, for real, in 140 characters or less and any place people will listen to or read me).
But more than that, I tell my story (here, in social-media land, in interviews, at conferences) because I am trying to connect with others. I want to know how YOU deal with days you can’t get your BGL above 3.5mmol/l despite mainlining glucose (or the days you’re high for no reason and are shoving insulin into you like there’s no tomorrow).
No one has diabetes all worked out and no one is a pin-up child for this stupid condition. But everyone has their own story which is real, honest and something they are trying to make sense of. Everyone has tips and tricks and ways to make diabetes more manageable. Everyone has tales of soaring highlights and terrible hardships. But not everyone wants to share them.
I am so blessed to be surrounded by friends who live with diabetes. Just walking into my office means I have an in-real-life support group of people with diabetes (see below). My gorgeous friend Jo is also my two-doors-down-neighbour. We have been known to share meters, strips, pump supplies and insulin. (We also tried to get our endo to buy the house in between us when it was up for sale, but for some reason she didn’t like the idea. Perhaps it could have been the suggestion that we remove the back fences so we could pop in for private consults whenever we felt like it.)
This is not, I now know, typical. The number of times I’ve met people with diabetes who act a little overwhelmed because it’s the first time they’ve been in the same room as another PWD. I know what that feels like! Even though I’m surrounded by people with diabetes, I still can’t help but get excited when I meet someone new with a faulty pancreas. DO YOU HAVE DIABETES TOO? SO DO I! HOW LONG HAVE YOU HAD IT? IS THAT YOUR INSULIN PUMP? HOW LONG HAVE YOU BEEN PUMPING? CAN WE BE FRIENDS NOW FOR EVER AND EVER AND EVER AND SHARE STORIES OF MIDNIGHT HYPOS AND THINGS THAT HAVE NOTHING TO DO WITH DIABETES TOO? is how I say hello. Once, I had to be restrained from throwing myself across a table at a café when I saw a man pull an insulin pump from his pocket to bolus for his morning fruit toast and coffee. ‘He may not want to talk about diabetes with you, Renza’, I was told. My response? ‘Of course he does. He just doesn’t know it yet.’
But the truth is that sometimes people really don’t want to talk about it with others. They hold their diabetes cards very close to their chest (I hold my insulin pump close to mine) and are not inclined to give out every private detail with complete strangers (or even their closest friends).
We need to make sure the quiet ones have a voice too and that the loud ones (that’s my hand you see waving in the air) are not seen as the only ones whose stories count.
You don’t need to be out there with your diabetes to have a voice. There are ways that you can silently make a difference. I just hope that everyone realises that their story and their voice is important and significant. And I also hope that no one thinks that reading the stories from the over sharers like me means that we have it all worked out. I know I don’t. And that senseless 18.9mmol/l my meter just threw at me after a lunch of no-carbs proves just that!