I’m feeling a little exhausted today. Fatigued. Burnt out. Drained.
People often ask me how I manage to keep diabetes in perspective. As well as living with diabetes, I work for a diabetes organisation. I am a diabetes advocate, travelling the world talking about my experiences of life with diabetes. I talk to a lot of people about their diabetes. That’s a lot of diabetes – much of it not mine.
Most of the time I manage quite well, thank you very much. I am the queen of compartmentalising and I have learnt to leave work stuff at the office. I turn away from online conversations that annoy, sadden or anger me, and I make sure that the people with diabetes I call friends – who I enjoy spending time with outside of professional settings – are people with similar attitudes to living with a chronic health condition to me.
But this week, it has been hard to turn off the noise.
Online in the diabetes space, there has been a lot of chatter. It is in segments of the DOC I generally stay away from because it is not my diabetes space. But for work purposes, I’ve needed to be in there this week. Watching, reading, and hurting. I am feeling hurt for my tribe.
Let me be very clear here, my tribe is other people with diabetes. It is not their support people or their parents or their partners or healthcare professionals. It is people – children and adults – with diabetes. And in some instances, I don’t think they – we – are being served well.
We are quick to jump in when a healthcare professional or the media is doing a disservice to people with diabetes by misrepresenting the condition. We berate them, saying they don’t know what it is like to live with diabetes so how dare they say what they are saying; that what they are doing is adding to the considerable stigma surrounding diabetes. Yet there are people living with someone with diabetes – but do not have it themselves – who are just as guilty of stigmatising those of us living with it every day.
While I acknowledge and understand the importance of those other people – it takes a village, a fucking village, to live with diabetes – it cannot be denied that the only people who really know what it is like to live with diabetes is those of us who are actually doing it. Day in. Day out. As much as a loved one says they too are living with it, they are not. Their experiences of diabetes are no less valid, no less important, no less part of the fabric of the diabetes space. But they are not the ones living with it every day.
I am not minimising the experiences of those walking alongside us. We need you; we are so grateful to have you there. But you are not walking in our shoes. In exactly the same way that I am not walking in yours, and therefore, cannot understand exactly what it is like to love someone with diabetes.
I’m tired of thinking about how some of the narrative about life with type 1 is playing out. I fear that it is painting a life lived alongside someone with diabetes as hopeless. My life is not hopeless. My family’s life is not hopeless because I have diabetes.
So this weekend, I am taking a break. My online interactions will be about other things – cookie recipes (I have some new cutters from Stockholm that need breaking in), Nutella memes and finding inappropriate e-cards to send to my sister.
Have a great weekend.