Telling the story of ME recovery

I’m trying something new here. I recently found out, having been feeling ill for the best part of a year, that I have ME. It’s not something I’ve come to terms with yet and I’m looking for ways to take back a bit of the control of my life and body that I feel I’ve lost.

This week I tried out doing a video diary. That’s nothing new. YouTube is full off people talking about their illnesses so I’m adding to already crowded field. The point is not that I think I’ve got anything useful or new to say or that I’m uniquely ill; I’m doing this mostly for me. In workshops I often refer to a quote about storytellers ruling the world which can be interpreted a gazillion different ways. In this case I’m trying to assert a sense of agency over my symptoms rather than feeling I’m at the mercy of them. The world I’m trying to rule over is me.

There’s an ulterior motive as I talk about in the first video, about making people I know and work with aware that I’m not at my best. That takes a bit of the pressure off me and lessens the feelings of guilt that I might be letting people down from time to time. It’s easier to do it like this than go round explaining to people individually – something which would feel like a demand for sympathy which is not what I’m trying to do. I’m happy to talk about it face to face with people if they want to but I won’t be shoving it down anyone’s throats.

Unlike some of the other storytelling stuff I do, I’m not bothered too much about technical or content quality. I’m trying stuff out. It’s unscripted, unpolished and for the moment, unedited. Much of what I plan to say gets forgotten. I’ve never been great at speaking off the cuff so maybe this is good practice for me.

I’m not fussed how many people follow this. I don’t know how long I’ll keep it up – there are a few things I think it’ll be interesting to talk about but whether the ongoing treatment stuff is just too tedious, I suppose I’ll find out.

But I think there will be benefits for me by being open, and who knows? Maybe it’ll be useful for people who are going through something similar.