Sick of Making Sickness Palatable
Why do our loved ones turn away?
‘It’s great to see you looking so well,’ she says.
A spring breeze carries over the aroma of chorizo appetisers and sun cream, as I adjust my wayfarers with a tight-lipped smile.
‘Oh, thanks,’ I reply.
Within seconds, another has me by the arm, and the greeting ritual is repeated.
‘Lovely to see you doing better.’
‘You’re looking well.’
‘So glad you were well enough to make it.’
The sentiments continue. My responses remain civil. Excusing myself to the bathroom, I remove my shoes and press the soles of my feet against mosaic tiles. The feeling travels up my body in jolts of prickling heat; a sort of inner turbulence I can’t quite pin down. My right hip throbs as I arch over in an attempt to calm the tachycardia I’ve become so accustomed to.
A 4 am migraine, an outbreak of hives, as well as my daily debilitating fatigue have all provided me with ample excuse to beg off. And yet, I’m here. Hair curled, vintage frock, Revlon lips. I begin questioning my choices. I begin questioning their words.
Well, better, well, well, well.
I can’t remember offering any suggestion of wellness, nor can I remember being asked. So, I have to wonder, what aesthetic might fulfil their ideal of sick? Perhaps a mobility aid? Maybe if I’d dressed more casually, forgone the makeup, and gathered my hair into a pillow-matted topknot? Or could it be my relaxed demeanour?
I imagine them steeling themselves against the sight of a pasty, drawn version of myself being wheeled into the garden party with tear-stained cheeks, dressed in baggy lounge wear, and swathed in blankets. I’d appear briefly, and return to my four-poster bed of gothic-romance folklore, as well-wishers would weep beside me in rocking chairs with handkerchiefs and offerings of broth.
The idea is laughable. Outdated by centuries, and inaccurate from the off.
I lace my shoes back up and wash my hands with pandemic intensity. My conditions have always been invisible, and yet, this particular brand of denial feels new to me. For two years, I’ve contended with worsening symptoms, some diagnosed, some not. Autoimmune disease, a connective tissue disorder, dysautonomia, and a host of unidentified co-morbidities leave me unemployed, and unable to pursue the career I’ve studied six years for.
I’ve burned through savings on private appointments, battled to be seen by specialists, experienced both apathy and empathy from the medical world, endured test after test, scan after scan, all to receive very little treatment options, all to have my ordeal diminished by loved-ones, who now classify me as well.
Are they taking the piss?
Composure regained, I locate the drinks table in my host’s oak-panelled kitchen. I linger by the Pimm’s, talk myself down from seeing off an entire pitcher (absolutely not worth the inflammatory hangover) and muse further on the greetings I’ve received. Ice tongs in hand, I stand at the window and watch the party guests mingle on the lawn.
These are good people; kind, funny, intelligent. Never intentionally rude or judgmental. It occurs to me the truth contains some nuance.
Man, I hate that.
So, I ask myself, why do our loved ones turn away?
It’s fair to say that people see what they want to see. Science says so. Suffering is hard to watch. As an onlooker, it’s easy to feel helpless in the wake of chronic illness. The very notion of it contradicts our values; that we could do everything “right” and still see no improvement. That we might practise yoga, eat the sort of foods that can only be sourced from specialist health stores, drink three litres of our own urine a day, meditate, levitate, cut out caffeine, denounce the dark arts, avoid alcohol, gluten, and porn, and somehow, still not improve.
Or perhaps witnessing such an illogical decline brings up an innate fear of what the future may hold for the well. Pouring thick lines of salty denial around themselves in a circle of protection is all they can do to stave off the inevitability of sickness.
Covid deniers, I’m looking at you.
Two million people in the UK alone are thought to be living with long covid, and that’s just a recent addition to the already eye-watering statistics on dysautonomic conditions and autoimmune disease.
So, despite the very rational anxiety of one day joining the vast armies of the sick, in light of such towering numbers, is turning away a sustainable approach? Was it ever?
If we’re honest with ourselves, we’ve all been guilty of treating suffering as contagious. We’ve hurried past the homeless man in the banking hall doorway, refused to look him in the eye. We’ve given a wide berth to the shrunken elderly, bundled up on a trolley and attached to IV lines in the hospital corridor.
Our actions aren’t malicious, simply reflexive. But it’s a reflex we must challenge. Not least because suffering doesn’t look the same for everyone, and our assumptions can be harmful.
Not all disabled folk are sad, not all youth are blessed with health.
The snapshot of a smiling young woman at the dinner table reveals nothing of the trade-off; the bargain she must strike with herself, the terms of which are ever-changing. She does the calculations. Will tapas out with friends write off three working days? Will an afternoon of bed rest be necessary to prepare for a coffee date with her mother? Will an hour of dancing be worth the week-long muscle spasms?
And what of the consequences of the accommodations rarely accommodated for? The dietary requirements, comfortable seating, bathroom access, non-alcoholic drinks, quiet places to escape: the absence of which tips the post-social wave of fatigue into tsunami-like proportions. And the devastation lingers. She’s forced to question the permanency, whether she’ll bounce back from this one.
It’s only a matter of time, surely.
Grieving alone is hard. It’s tough enough to mourn the person you were, or the person you once thought you’d be, without watching those around you dodge all knowledge of your loss.
It sucks to wear black when everyone else is dressed in gold.
It sucks to be trapped on the obituary pages while everyone else parties on page six.
Thank God my health has come a long way since that warm Spring day, and perhaps that’s why I’m able to reflect with more eloquence.
But there’s still so much to unpick. Mental illness is just as applicable, likely more so. The experiences and solutions are beyond complex; far more than can be addressed in one blog post.
For now, consider this a reminder to avoid assumptions. Question the faulty narrative of sickness you’ve been fed by the media, paint new pictures, and open your mind to different pictures of suffering.
I hope with all my heart you never will, but numbers tell us that one day, you’re going to understand how it feels.
Another amazing blogg Amy,your very talented 🥰xx