It’s difficult to know whether to respond to these pieces and whether to give them oxygen… But equally it’s so infuriating and insulting that it’s hard not to. I think that for me, because of how they’d mobilised recovery as a concept and how they claim it comes about, I thought that I would write a piece from my own experience because of my privileged position in terms of recovery. I have recovered myself – by pure chance – and that experience has given me insights into recovery and the experience of illness itself compared to those displayed in the article. I thought that my experience was potentially an interesting and useful angle.
You only get 600 words – but I wanted to write from my personal experience, even though I don’t think that recovery stories in terms of M.E. are particularly helpful. It’s not something that I would speak about with acquaintances for example. ‘Recovery’ is not really how M.E. should be framed – I am very careful with how I frame it. If I have to talk about it (in my academic work and on social media or in any public way) I’m conscious of how recovery stories can be manipulated and how they could be heard in a way that perhaps isn’t how you (as the person telling the story) meant them to be heard.
I felt like that offered an interesting angle and gave me a chance to put a critique. It wasn’t something I did without having thought it through really deeply.
My experience was that I developed M.E. very suddenly and quite severely at the start. I was diagnosed three or four months after a nasty viral infection around my 15th birthday. And then, years later, in 2016 I got another virus. I was at this point working, doing a year abroad, as part of my part-time university degree. I was working very part-time as a volunteer in a French nursery, and the children gave me something horrible, some sort of nasty virus. I had had viruses before, whilst living with M.E., and they had made me more ill.
I was worrying about how to get back home to the UK, and how I’d cope, but instead after the new virus cleared so did my M.E. symptoms. I don’t really understand what happened medically – it was so unexpected. It’s not as if there’s any useful conclusion I could draw: you can’t recommend people who are unwell to go out and catch a virus!
After getting ill with this new virus I experienced two moments of realisation that things had changed.
The first was as I was going through the door into my bedroom on a Tuesday morning. I had just brushed my teeth and I realised that my throat wasn’t hurting (it had hurt for the entire time that I’d been ill). And I thought ‘That’s really weird’. I sort of dismissed it, but that was the start of not having any symptoms: they just disappeared.
Some weeks later, I remember being hit again by a realisation that was even more significant: if this is recovery, then I’ve done nothing to cause this. I’ve done nothing to bring this about. So NONE of this was my fault. I realised that I’d not only not done something to ‘get myself well’ but I’d also not made myself ill in the first place. It wasn’t my fault! I had no idea that I’d been carrying that guilt and self-blame for seven years. You don’t realise it’s so insidious and that it has shaped how you feel about yourself in ways that you don’t even realise. It is really shocking.
chroniclivingtherapy.com
