I spent years out of work. Sure, I had the odd freelance gig here and there, but I basically spent my entire time after uni quitting every single job or internship I started because I wasn’t well enough to keep going. 

Whenever I had to do that, I’d start projects online to keep my mind busy, and I’m fortunate that a couple of them got me a fair amount of attention, giving me experiences and opportunities that in a way made up for my lack of a ‘normal’ employment history. Thanks to the internet, I could write myself into a career. 

I genuinely never thought I’d be able to have a ‘Real Job’. My dreams of travelling across the world as a diplomat (or when I realised that I don’t have the patience for diplomacy, a counter-terrorism expert) were quickly scuppered. Even jobs at charities closer to home were too much. I couldn’t get out of bed, couldn’t stick to a work schedule, how could I figure this out? 

That’s why I feel so incredibly lucky to now have my dream job as a journalist at the BBC. I work part-time, from home, on a team where deadlines aren’t really a thing. I get to write about women’s health and disability and the things I care about the most. 

But going from near on zero to a Real Job was hard. Throw in an assault only a week after I started, and it was a shock for my body. I felt isolated from the team when I was working alone in my bed. I felt left out of opportunities offered to other people on my scheme, unable to do the networking so vital to journalism. I felt worried that my work wasn’t of a quality that I expected of myself, and it took longer to produce than my colleagues. 

All my insecurities and worries about how my health impacted my work came to the fore, and Imposter Syndrome, that bitch of a companion, came along. 

I constantly apologised, even though I didn’t need to. My colleagues have been incredibly supportive and kind and I feel so lucky to be in a situation where my health needs and concerns are taken into consideration with care and empathy every day.

But for the last month or so my health has really started to suffer. It’s been a combination of a lot of things, but also just my body doing what it does: freaking out. I could sense that a crash was coming, and spent a couple of weeks pushing through before realising that I had to stop. 

I was so scared to go on sick leave. Terrified that I was making even more obvious my difference from my colleagues. Proving that I wasn’t worth taking a chance on. Too much of a hassle to employ. 

Sadly, these are challenges that most people I know with chronic illness face. We fight so hard for everything we’ve got that it’s so scary to think that one flare can make us lose everything. Just like they did before.

Everyone knew about my health before I started, and I was honest about saying that sometimes I just need to stop. That’s not my fault (she types, reminding herself). It took me a while, and conversations with colleagues that I trusted, to say something. I was promised I would be fine, that no one would think less of me that my health had to come first. So I did it, and I took some time to literally sit in bed and do nothing. 

It breaks my heart that even as I write this, those fears and insecurities are still there bubbling away. Everything my health stops me from doing at work, all the things I wish I could do, makes me question my value as an employee and what it means for my future career. It shouldn’t, but it does. Because experience is a hard thing to shake off, and so much needs to change for people with long-term, fluctuating and invisible disabilities to be understood in the workplace. 

But at least, for me, for now, things seem to be moving in the right direction. And even letting myself take this time off is an important first step in proving that maybe I can have a Real Job.

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