In many ways, I’m an optimist. I’m a smiler. But every now and then something knocks me a little bit.
This week I’ve been thinking about my future, applying for part-time jobs, frantically reworking my PhD thesis in its final stages. I get asked a lot what I am going to do when I finish my PhD. Firstly, submitting your thesis isn’t when its “finished”, with the exam and corrections, I have no idea when it will be truly finished and when I will graduate. Secondly, planning what to do next is hard. Not because (as some people think) I want to be a perpetual student and stay at uni forever but because I honestly don’t know what I will be able to do long-term.
In an ideal, non-sick world I’d stay within academia. I’d apply for post-docs and research positions that mean you have no security and frequently bounce around institutions – if you’re lucky enough to get them. If you’re not, you work maybe as a university tutor, trying to publish your research and filling out endless applications. But I can’t do that. I’ve realised that this career path does not suit someone like me. Someone who has so many specialists that it took years to assemble, who has a range of ongoing treatments and medications that cannot be disrupted. Someone who needs a support system to function – and I don’t mean that I’m scared to move away from home or anything but living with a chronic illness is hard y’all. I rely on my support system of my mum, my family, my friends, my church, my GB to keep me going at times when I want to give up. To leave that system would be heart-breaking and isolating – and my illnesses are pretty good at those two things already.
My back-up career plan was always teaching. I love teaching at uni. But training to be a teacher means an intensive course which even my able-bodied friends have found draining and difficult. And even if by some miracle, I survived that year, there’s no promise of a job in NI. In the alternate universe where I am a teacher, I’d be one who had to take a lot of time off and who taught sitting down clutching a hot water bottle the majority of the time. So I’ve had to say goodbye to that long-held plan.
My life has not turned out the way I thought it would – does anyone’s? By 27 I was convinced I’d have a proper job, my own house, my own yellow VW Beetle and maybe a relationship. But, I’m still at university, living at home with a VW Lupo that was once yellow but it so dirty its hard to tell with a wing mirror held on by wishful thinking. Oh, and I’m single. Not that that’s really the issue here. The issue is that my conditions – endometriosis, PCOS, interstitial cystitis (the main three) – have taken my life in a completely unwanted direction. Instead of staying on the route I’d planned, with excellent signposts and clear progression through various checkpoints, I’ve ended up on a dirt track in the middle of nowhere with a faulty Sat-nav and no idea where I’m headed. My future seems like that creepy road in Beauty and the Beast where the wolves live.
I think I’m allowed to be sad every now and then for the life I could have had. It’s hard not to be when others are doing so well in life; when friends land awesome jobs, fearlessly travel solo, advance in their solid careers, get engaged, get married, get mortgages. Everything I do is now coloured by the fact that I am not ‘normal’. I have to be extra-careful looking for jobs because I know I will not be able to stay on my feet or work long hours. I will need a boss who gets it – and I’ve been pretty spoiled by the awesome support of my supervisors at uni and the part-time jobs I’ve had here.
I’m not going to get better. Yes, I’m far better this year than I was last year thanks to my most recent surgery but I’m still not healthy. I live with pain everyday although, thank goodness, the pain is now reduced to a manageable level but still there. There’s no cure for endometriosis or interstitial cystitis. My insides will always be messed up.
It’s okay to grieve for the life I could have had. But it’s not okay to wallow. Like I said, I’m a smiler. I’m an optimist. I experienced the onslaught of fire and brimstone in my pelvis for years and still managed to get a first in my degree. I fought like a Viking for my diagnosis and I work hard every day to help my body be the best version it can be. I won a national research award despite not being able to walk without a stick and pumped to my eyeballs with painkillers. I’m finishing a PhD and yeah, it’s a bit late but so are most people’s and I’ve had friggin’ three operations since I started it. If I can’t find a job that suits me and my body, I’ll just make one. I won’t roll over and give up. But I won’t pretend that my life hasn’t changed permanently because of my health.
I’ll adapt. I’ll figure it out. I’ll succeed. I’ll smile.