When your whole life has been altered by illness, and absolutely every aspect of it consumed by that illness, it can be very hard to know who you are anymore.
When I became unwell, I was only just a History graduate. Only a couple of months after the graduation ceremony, my life was suddenly very, very different.
I have never had the chance to know who post-university Anna is.
In some ways that is good. The only comparisons I can make are to compare my life to the lives of my peers, as hardly anyone is exactly the same as they were at the age of 21, regardless of health conditions. But the lives are my peers are very different to my own and comparison really can be the thief of joy. It’s something I’ve been able to stop doing for the most part.
Absolutely everything post-university has been impacted by my health from the things I can eat and drink, to the things I can comfortably wear, to the friends I have, the hobbies I’ve tried…
The parts of my life that have most skewed my sense of identity are:
a) I am on disability benefits. (For one, money means a lot in our society. And so it can be hard not to measure your worth on how financially independent you are.)
b) I have a health condition that has an extremely damaging stigma attached to it.
These things have not been good for my sense of self worth or identity.
But I am starting to learn, and I’m rediscovering, who I am.
Recently Mr Tree Surgeon was very unwell and our roles were almost reversed. He became bedbound and unable to do anything other than get himself to the bathroom.
Seeing him so incredibly unwell was heartbreaking. I have no idea how he copes with me being that ill so often, and poorly to some degree every single day. It was awful. I genuinely don’t know, if I was him, if I’d have been strong enough to stick around in a relationship. For me, it was a new kind of desperation.
It reaffirmed my belief that he is an exceptional human being for entering into a relationship with someone who has complex health restrictions. But in a strange way, it also made me realise that there must be something within me that makes it all worthwhile. That I was worth entering into a relationship with.
My friends have not stuck around through pity, as I shared recently. There is something about me that they value. Perhaps there is something so good within me that makes friendship or relationships worthwhile for others, despite the awfulness of my health, the constant cancelling plans, the unpredictability of things, the needing to make meet-ups more accessible for me, the confusion over the difference between good days and bad ones.
Perhaps I’m worth it. And almost nine years in, I am finally starting to see that. And it feels odd to admit it because I don’t want to come across as smug or egotistical.
For me, my health impacts everything and it is incredibly difficult to separate it from my personality, partly because I never had to the chance to meet that post-university Anna I’d assumed I’d become. So I have no idea where the illness stops and Anna starts. I am learning that I am not my illness, even though it is in fact all consuming. It is very confusing and it is actually quite hard to do. In fact I can’t quite articulate how hard it is and actually how bizarre it feels to be trying to do this.
For starters though, I like being in or near water. That’s something about me. Something that’s about me and not about my illness. Eight and a half years is a long, long time to have felt lost. And it is going to take a while to sift through and separate myself from M.E. But like everything, it’s a work in progress.