What I've learnt from working with a disability

Filming

Holding down a full-time job at one of the world's most well-known, prestigious and damn right amazing media corporations was never going to be easy. But recently it's taught me more about my disability than ever before, and I wanted to share a couple of insights I've gathered that have really tested me out over the past couple of months. The list is longer - I'll probably add to it or do a different blog post at some point! 

The guilt.

"Of course you can work from home, for four days out of five next week." I asked and my editor said yes. And even though I knew I needed to take this time for health - both physical and mental - I still felt so guilty at even asking. 

It's really hard when you just want to do a good job not to shoulder too much all the time. I'm really bad for this, and even when I know it's the right thing to do to take a step (excuse the pun) back for a bit and get back on track I feel as though I'm letting people down. 

But it goes deeper than that. It's not just letting people down, it's this internal worry that people are constantly going to think bad of me, even though they never give any indication (well not never, some people definitely do). 

I know I do a good job, I work hard and produce good stuff, but in my mind that's not enough to compensate for the amount of time working from home. 

But it takes constant confidence to keep saying, this is what I read right now so I can do my job at the best of my ability. Which leads me to my next learning...

You have to shout to get what you need - and this isn't always easy. 

Whenever I go swimming I always get questions and comments. "What happened to you? Aren't you amazing." etc. etc. etc. And nine times out of ten I answer politely, smile and keep on swimming. But on those days that I'm in a foul mood, don't want to talk to anyone, have anxiety, JUST WANT TO SWIM I can be quite rude. 

This is because having a disability seems to be an opener, carte blanche, for people to ask you about your body, life and health. People want answers for things they don't understand, I get that, but sometimes I just don't want to answer them. 

The confidence, happiness and navigation of a conversation that ultimately makes inquisitive people feel uncomfortable and regret asking about always falls to the person with the disability who didn't start the chat in the first place. And so, to be a friendly, active person with a disability going about their life requires constant confidence.

The same, I've learnt, happens in the workplace. People don't know my needs, don't know when I'm struggling and why should they? The navigation of that situation, of letting people know when I need time off, or support, or less walking falls always to me. Which is how it needs to be. But that doesn't mean it's easy, for the same reasons that swimming is not always easy. 

I feel a real sense of constantly having to think about how to tell people how much I'm struggling, always with a fear of how that is coming across, what they're thinking, and whether I'm saying enough/too much. 

When this plays on my mind I've begun to realise that I take on stress, the extra worry isn't good for me and really doesn't need to be there, but it is. Every person you tell is different, all respond in different ways, and it's really personal to me. I don't want to be defined by my disability, which I know I'm not, but equally am beginning to realise it will always be a part of how I work and the amount I can give. 

It's now figuring out how to have the constant conversations I'm working on.