Julia Buckley, journalist and author of the book Heal Me, pens an essay for Jameela on her experience with chronic pain and her struggle to be believed by those around her.
I see the looks you give me. The quick up and down when I ask for help at the station; the grimace at work when I say, sorry, I can’t manage that today; the frustration when I suggest, let’s try another pub, there’s nowhere to sit.
I see the boredom in the doctor’s eyes as I spool through my medical history, the glint of suspicion from the driver of the airport buggy, the open disgust of the colleague who’d arranged the team-bonding game of rounders I dared to sit out.
I know everything you’re thinking. That I’m lazy, that I can’t be bothered, that I’m a princess. That I look fine to you, although I should shed a few pounds – which, by the way, I could do if I “got off my arse”, as a boss once yelled.
Sometimes, to stave off reactions I use a stick, even though I don’t need it. Sometimes I explain how a twinge in my arm might lead to four years off work if I do something as simple as upload a photo. Sometimes I burn with shame at your looks; sometimes with anger. Although I know if I cry or snap, you’ll add ‘attitude’ to your tally of my faults.
More than a third of the UK population has chronic pain. Often, as in my case, it’s an injury that kicks it off – but while the tissue heals, the body’s pain-signalling system gets locked in the ‘on’ position. After two months, the brain rewires itself so pain becomes your new normal. Currently, there’s no treatment for it: chronic pain is a life sentence. And because there’s no tangible ‘proof’ – we often look fine on the outside – it’s a disease that tests natural cynicism.
I was plunged into the world of pain in 2012. I’d dipped toes in it before: a fractured wrist that never healed at 13, an arm that conked out for A levels, a year off university with ME, bouts of RSI that I assumed were because I was unfit. Actually, they stemmed from Ehlers-Danlos syndrome (EDS), a connective tissue disorder that causes injury-prone joints. I was finally diagnosed at 31.
Reaching for a coffee, a joint in my neck slipped and crushed a nerve. It felt like someone had doused my right arm in petrol and lit a match. It burned for four years.
At my worst, I couldn’t dress myself or wash my hair. It hurt to pick up a book, to sit, to stand. Painkillers didn’t work, and turned my brain to mush. During my four years of disability, I learned a lot – about pain, but also people’s attitudes to it. Because there was no visible injury, I wasn’t believed. Family implied I was milking it; a colleague quipped that everyone had been “struggling” but only I had sunk.
My ex posited that my pain was psychological as he dumped me, while doctor after doctor suggested antidepressants (doctors are twice as likely to attribute female pain to psychological causes). They also told me there was no hope of getting better.
Drowning in mixed messages, I couldn’t even trust my body any more. I questioned myself constantly – was I making it up? Did I secretly love living with my mum as my carer? Would I feel better if I went on a yoga retreat, as one friend suggested? Was I just lazy?
I know what you’re thinking today because I spent four years thinking the same. As well as pain, there was isolation. Some friends drifted off; I drove others away with my anger and self-pity (my honesty, too – a close friend dropped me the day I confided I was suicidal). I became aggressive and brittle after years of disbelief.
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Then one day – thanks to a faith healer, but that’s another story – the pain disappeared. Today, I’m the healthiest I’ve ever been but pain is still part of me. I think about it every day. I live in fear it will return, which is why I’m “risk-averse”, as one friend put it – no rounders, no sprints for the bus.
I’m not one of those people who’s been improved by illness. I’m harder than I was, and have less patience than I did. After losing my autonomy for four years, I’m slightly control-freakish, and I get anxious when I’m not being listened to. When I see disbelief – because today I look less ill than I did even back then – it pitches me back to the gaslighting years.
On the plus side, instead of lambasting my body, I’m grateful to it every time I walk home from work without a knee popping out, or swim three lengths without my neck burning. For the first time in my life, I accept its limitations. I wish others could do the same.
Photography: Sarah Brick
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