Welcome to this final day of a remarkable week. Journalist, Julia Buckley, closes this series by sharing a fairly harrowing account of what is often an “invisible illness”. Julia poses the question, “If it cannot be seen, does that make it any less painful?”
There’s a reason why not many people know that I’m ill. In 2002, when I was at university, I got glandular fever. When, after two years, it was worse instead of better, the doctors called it ME.
I took a year off my studies, but stayed in my university town – partly because I’d signed a lease, partly because there was a good ME unit at our local hospital, but mostly because going from student digs to my mum’s house was one indignity too many.
To keep my spirits up, and to remind myself that I wasn’t an OAP yet, whatever my body was telling me I’d try to make it out every so often. It would take days of bed-rest to recover from a night out, but at least it buoyed me, mentally. I was keeping a grip on my life, I told myself. There was hope for the future.
Then the Whispering Began
My tutors asked me why, if I was ill enough to need time off, I could occasionally be seen in the pub. An acquaintance (who, ironically, is now a prominent campaigner against Twitter trolls) launched a vicious on-line attack, saying that I had mental health problems, and was getting special dispensation because I was a suicide risk. Then, a few months later, I found out my housemate had been announcing to people that there was nothing wrong with me. “She still goes out,” she had said. “She’s not ill, just hungover.”
That Was the Day I Stopped Discussing my Health
Ten years later, only a handful of people know I have a chronic pain condition. To my Facebook friends and Twitter acquaintances, I’m some kind of modern day flaneur, never posting about irritant colleagues or lamenting that someone finished the office milk, instead uploading photos of jaw-dropping Cornish views or tweeting about my latest yoga retreat’s fixation on the Perineal Chakra. Little do they know that, although I’m in Cornwall, I’m living with my mum in the room whose pink carpet I chose at the age of seven; I long for the days of making tea for office colleagues; and my constant global travels are all part of a desperate quest to find a cure.
The worst thing about chronic pain isn’t the pain itself (like a carving knife permanently wedged in my armpit and a fire kindling beneath my shoulder-blade, dripping sparks down my right arm, should you really want to know), the untimely end to your career (when people ask what do you do, I say, well, I was a journalist, but I’ve been off sick for two years), or the identity swap from functioning member of society to invisible invalid.
It isn’t even the fact that I’ve had to ditch all my clothes with buttons, buy ready-chopped vegetables and permanently sport the dragged-through-a-hedge look, since I can’t even straighten my hair anymore. All that pales in comparison to the loneliness.
When I got ill two years ago – struggling to meet a deadline that had come in overnight, I typed and typed until something slipped in my neck and crushed a nerve – what stood out to me, amid the searing pain and fear for the future, was how most people weren’t merely unsympathetic; they were oblivious.
I was signed off with what the doctor assumed was RSI, but my bosses asked me to carry on working – “We’re all struggling.” said one. A friend seemed put out when I cancelled dinner; another looked nonplussed when I walked out of a movie because I couldn’t sit still while the pain roller-coastered around my right side.
If only I had a joint in plaster, or hair falling out, I started to think, they might accept me as sick. But, as I knew from the ME, to most people an invisible illness is an illegitimate one.
That was just at the start. As it progressed, and as one diagnosis (RSI) gave way to other hypotheses (Joint Hyper-mobility Syndrome, Ehlers-Danlos Syndrome, neuritis, nerve damage, CRPS – dubbed ‘the suicide disease’ because it’s relentless and incurable – and the current favourite, Thoracic Outlet Syndrome), I realised there were four types of people.
Sympathisers were a slim minority. The majority simply wanted to ignore that there was anything wrong; they would not only tune out if I dared mention anything health-related, but would glaze over if I so much as stretched or switched position mid-conversation.
More annoying were the know-it-alls, who liked nothing better than instructing me how to get better. “It’s all to do with getting fitter,” said my boss, who couldn’t conceive of pain on exertion not necessarily meaning gain. “Seriously, just go to India and stay in an ashram,” said a colleague who’d found herself on her inevitable gap year. Another work contact looked riven with jealousy when I told her that I was already too flexible for the yoga she was prescribing me (overly stretchy connective tissue is at the heart of my problems – if I stretch, I can dislocate, like when my shoulder popped out cleaning the hob last year).
But the ones who upset me the most were those who fell by the wayside; starting out sympathetic, but backing away once they realised we were in this for the long haul. The day that one of my best friends went (she’d been assiduously checking in on me, and was, I thought, one of the few people I could be honest with) was harder to deal with than days when I was floored (quite literally) by the pain. That’s when I largely stopped talking about it.
It took about 18 months to realise this, but when you have a chronic condition, you can’t even be yourself with doctors. Since chronic pain treatment on the NHS is palliative, not curative (the idea is to help you accept and manage your condition, not to cure it) and because the very essence of chronic pain is that you’re feeling discomfort where there’s no real physical explanation for it, psychology is at the forefront.
Eventually I realised that, if I threw on some clothes, limped into a consultation looking as rough as I felt, and tearfully begged for help in getting my life back, the doctor would often try to steer me towards a diagnosis of depression, or say there was nothing he – because it was always all he – could do. If, on the other hand, I got gussied up for a night on the town, coordinated my leopard print stick with a smart outfit and a mask of make-up, and strode in, demanding answers to get me back to work, I was suddenly taken seriously, and handed another label for my file of diagnoses.
It is, I recently learned, a known phenomenon dubbed the Yentl syndrome, dating back past Freud and Silas Weir Mitchell (the father of modern neurology) to the Victorians and their obsession with female ‘hysteria’. Women are more likely than men to have their pain attributed to psychological factors, and are less likely to be prescribed adequate painkillers. Chronic illness, it turns out, is a feminist issue.
But it’s Not all Bad
While the medical establishment appears to have given up on me (“Does it even matter what the diagnosis is, when we won’t be able to do anything about it anyway?” asked a pain management professional recently, as she discharged me from her clinic), there are things that make a difference.
I’ve not yet found a drug that mutes the pain without causing insufferable side effects but physio (as long as it’s with someone who understands my issues) helps. CBT hasn’t worked for me, but mindfulness has. Meditation, acupuncture and massage all give me respite, as do hot baths and a glass or four of wine.
Pacing (doing a little less on good days, and a little more on bad days) keeps things on an even keel. And, as a former travel journalist, I’m still using up my air-miles to scour the world for supposed miracle workers, from scientologists in San Diego to Reiki masters in Cyprus. Nobody has cured me yet, but the fun of trying certainly takes my mind off the pain.
As I’ve come to realise, the best treatment of all is a social life. I’ve held on to a tiny kernel of people who’ll take me as I am; they’ll come to me when the pain’s too bad to move, or opt for the area’s crappiest, quietest pub when I can make it out – they’ll even incorporate my seating needs into their wedding plans. They don’t make my illness the centre of attention, but they make it known that if I need to talk, they’ll listen. When you’ve got a condition that’s as isolating as it is painful, the endorphins from a social life not only cheer you up, they distract the neuroreceptors that are usually overwhelmed by pain messages.
Thank you so much, Julia – and all the authors from this week. The key messages are, for me, around the judgemental attitudes from those who cannot begin to comprehend the often exhausting, debilitating periods these and all sufferers of chronic pain and illness endure just to stand still, in what is perceived to be the ‘norm’ from societal expectations.
Can you, the reader now, if you hadn’t before, begin to even acknowledge the sheer tenacity – and perhaps wonder, in awe – how the challenged human being can possess such strength, courage and determination? Because, if we do this, we can be proud to know these individuals for their humility in the face of adversity, just as we often manage for those with more obvious, physical disabilities. That is worth thinking about.
‘Gossiping’ Image courtesy of David Castillo Dominici / FreeDigitalPhotos.net ~ ‘Thumbs up’ Image courtesy of imagerymajestic / FreeDigitalPhotos.net