For me, disability causes a constant conflict between personality and body. Ever since I was small I’ve struggled to mesh the two together because I’ve never wanted to accept that there are things that I’ll never be able to do. From the age of about 8 until 14 I was awful for it: I’d just do everything that my friends were doing because I wanted to, and I’d rarely give a second thought to my feet. But then I’d end up with infections, and in a wheelchair. So living that way didn’t get me very far.

After about the age of 16 I’d managed to (sort of) make my peace with it. I accepted that I couldn’t ever live my life the way most people could, and I mourned it, but ultimately I realised that those are just the cards I’ve been dealt. I mean, my disability could be so much worse, and what do I gain from fighting it?

Then I was 19 and I had my gap year. I proved to myself that I could travel the world on my own: I went to seriously remote places, away from medical institutions, and showed myself that doing what I want to do doesn’t always have to end in infection and debilitation. It might sound trivial to you, but it was breaking news to me, my family and my doctors.

This year, quarantine happened and after a while the government started allowing people out for walks and exercise. This change to the lockdown brought so much relief to most people, but not to me because I can’t just go out for a run. I can’t just walk down loads of steps to the beach and then back up them, because if I do, I have to accept that I might injure myself. I might put myself in a wheelchair.

This is where we get back to how complicated disability is, because many of my readers have seen me in person and have seen me walk plenty of times. I can walk short distances, and I’ve been known to dance for hours on a night out, but sometimes it’s just luck that I don’t end up with a blister after doing these things. I’m a seasoned professional when it comes to internalising my worries and pushing my disability as far as it can go. I’m stubborn and I’m young, and I don’t see why all my friends can but I can’t. Like I said, it’s a constant conflict.

But I don’t write these blogs to be all ‘woe is me’. Loads of people have it so much worse than I do, and everyone does the best with what they’ve got. It’s just that if I’m going to write blogs about when I feel empowered by being a young disabled woman, then I have to show you the side of my condition which gives me no joy whatsoever.

Some days I just don’t want to be this disabled person. It makes me feel weak and suffocated. I don’t want to have to think about whether I can go somewhere, I want to be able to just go. Sometimes I look at my feet and wonder how it’s fair that I have to be the only person I know who can’t just wear normal shoes and have normal legs. I wonder how it’s fair that I’ll have this for the rest of my life, and how I’m supposed to get over it when there’s nothing I, or anyone else can do to ever improve it.

There are no solutions to these problems. Life doesn’t work in ‘fair’ and ‘unfair’ – especially when I don’t believe in any type of God. As far as I can see, random people get random sacks of sh** to deal with, and we move. I have a really good time even with the headache of my Spina Bifida, and it’s shaped me in so many positive ways. To be honest, if someone told me that I could flick a switch to get rid of it I’m not even sure that I would. Disability can enrich a person’s perspective on the world and life in many ways, but I’d never, ever, wish it on anyone.