Last week I had a tension headache for five days, my forehead so tight with holding my body together and overriding my back and hip pain, it was hard to the touch.
I sat or lay on a bed of cushions to work against a backdrop noise of pop and click as hip joints, knees, fingers and wrists snapped and shifted.
By Friday, I was crying with pain, without really even noticing, while trying to see my word document.
I returned about four months ago from a 20-month research trip to a country with minimal infrastructure, extreme climate and terrible living conditions, and political unrest. I’ve managed projects, led teams, done clandestine investigations into corruption under government radar – I owned a motorbike. God, I was insufferable.
But at the same time, I was taking UK-prescription painkillers from the local unregulated pharmacies. I was spending a lot of time lying on my back, in tears, going through notes, and delaying interviews. I was making the most of the sit-with-tea interview culture. Each of my part-time consultancies was done independently, where I could be ultimately flexible, my own boss, and any small eccentricities would locally be written off as white-woman nonsense. I took myself door to door on my heavily padded-out motorbike, or motorbike taxis. It was hot, and my joints were happier for that.
I have a genetic and pervasive joints problem that affects every part of me, and has gradually crept up since I was about 12. By 21, I was struggling to use my hands fully. By 24, I had been diagnosed with knock-on ME/fibromyalgia (every few years, they decide to flip my diagnosis). I’ve used walking sticks in the UK until a few years ago, when my hands and back rebelled against the pressure.
The last five years, I’ve gone downhill fast, visibly fast. In some ways, this is a psychological blessing: when I was in my teens, with absolutely no support (my parents enquired about surgery, gave me ibuprofen, and then stopped ever asking about it, to this day), I felt like a total fraud – that none of “this” was real, and I was a liar and attention-seeker.
That gave way to absolute denial, as my back, hips and hands progressively gave way into my 20s. And by the end of my undergraduate degree, I had a desperate case of ticking clock syndrome: do everything, everything I can beat my body into doing, before I can do nothing and give up. Having gone from feeling suicidal as a fraudulent cripple, I was then planning my own post-career euthanasia.
I can’t tell whether my life/body choices have been massively irresponsible or responsible. I feel like I’ve achieved or experienced a lot, and at the same time, fallen physically apart due to it. I feel like I’ve made every secret compromise I possibly can.
I’ve changed careers, given up on becoming a barrister, because of my body: because it’s a PhD, I can say it’s for personal enjoyment, but it’s always been for my body.
I’ve given up so much I enjoy, and can’t enjoy a lot for the pain: at least twenty percent of brain power goes on the clicks and clunks and physical management of just sitting or (unhappily) standing, and sometimes the brain fug of grinding pain means I can barely follow conversations.
I know that my PhD research trip was one of my last great independent journeys – I can never face doing that again. (I even have funding to go back – but I’m stalling the application, I can’t bring myself to say no, but I don’t think I can physically do it again.) I can feel my independence, and my options, falling away.
So now I’ve worked my way into what feels like a double life. On paper and in university, I am organised, experienced, independent, and capable of extreme expeditions to wonderful places. In private, in life, I am housebound due to back and hip pain about three days a week, exhausted, weepy, angry, and depressive. I battle my body every day, and suffer from increasing self-hate.
Finishing the PhD means at least a potential sedentary career; the better I do it, the safer I am, I think. But I feel dislocated, in so many ways. How can I drag this body on? How can I explain my double life to people, who know me as the student who went to X for two years?
Now I finally know I’m not a liar – and I’ve made myself look like one to everyone else.
This article was submitted by an anonymous 3rd year PhD student at an English university. Image is provided by the author.