Sickness Shaming

"Did your parents never let you play in the dirt when you were a child?"

Hello friends,

I hope you’re having a good year! 2024 has decided it would be fun to kick me repeatedly, in the teeth, when I’m down. But that’s okay because I’ve decided to kick back by keeping a gratitude diary as part of my post-COVID syndrome recovery, and it’s doing wonders for my outlook, despite troubles brewing at work and the continued fatigue.

Things are going to get better, I can feel it in my bones.

Anyway, here’s some thoughts on what I’m calling ‘sickness shaming’ and a culture that insists on making people feel bad for being sick.

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Sickness Shaming

I’m British, so I hate admitting this, but I don’t have a particularly robust immune system. Viral infections, in ALL their many, delightful forms, LOVE me. They love me like wasps love anything sweet and sticky—swarming in to feed the moment the seasons change, stress levels fluctuate, or someone in the next village sneezes. I’m not entirely sure why I’m more prone to falling ill than my peers, but it’s always been the case. Maybe it’s genetic. Maybe it’s lifestyle. Maybe it’s just extensive bad luck that’s found me in the wrong place at the wrong time in the company of the nastiest, most contagious viruses. Maybe it’s a super power that has yet to be recognised—like I’m some sort of cold, flu and infection magnet that sucks in all the bad germs so other people can live robustly healthy lives.

Yeah. Let’s say it’s that.

Whatever the reason, I have a track record of getting ill more frequently and to a greater extent than the average person. Which not only sucks but is also deeply, deeply shameful. True Brits don’t get sick. We don’t take time off work. It’s not the British Way. Arm hanging off? Stick a plaster on it and soldier on. Child has smallpox? Send them to school. Grim Reaper appears at your desk in the middle of the working day? Tell him you’re busy right now but he can schedule an appointment for next month.

‘Did your parents never let you play in the dirt when you were a child?’ is a question I was genuinely asked when I was a teenager by a friend from youth group, after I’d been off ill, yet again, with a chest infection. Or maybe it was after I’d had whooping cough and pneumonia simultaneously? I don’t precisely remember. Either way, I’d been very un-British and dared to be off sick with something.

I’d come across this theory before, of course: that children who ate worms, licked the pavement, and never washed their hands after playing with roadkill, grew up to be seven foot tall, with bones of steel and immune systems capable of withstanding the bubonic plague and the radiation fallout from an atomic bomb. If I was sick all the time, I had clearly been raised in a hermetically-sealed bubble, fed a diet of soap and disinfectant, and been deprived of a healthy childhood spent making mudpies and petting the local rats. This, of course, was what my friend’s question was implying, delivered as it was with a pretty hefty dose of disdain and a thinly veiled judgement of ‘You’re sick because you’re pathetic. Go and eat some dirt’.

Gotta love your friends at that age, huh?

The answer to his question was, ‘Yes, they did. All the time, actually,’ which is what I think I did reply, with as dead-pan an expression I could muster to hide my internal mortification and embarrassment.

I honestly spent ninety-seven-point-eight percent of my childhood outside, regardless of season, weather, entertainment options or even health. My mum’s primary cure for any sickness was to bundle us up in coats, scarves and hats and then shove us out the back door into the garden for twenty to ninety minutes, at least twice a day. I remember once being off with tonsillitis when it happened to snow heavily. Into the garden I was sent to make a snowman. I think I was a little delirious with a  fever at the time because I distinctly remember talking aloud to the snowman the entire time I was out there moulding it into existence. Maybe wrapping us up warm in harsher weather was too kind though. Maybe we should have been thrown outside, completely naked, to harden us up and develop constitutions as tough as granite.

Either way, being called out at sixteen, by a peer, over your poor health record really stays with you for life.

Sickly, feeble, weak, frail, infirm, ailing, delicate. Every single one of these words terrifies me. They immediately conjure up the image of a pale, sunken-eyed Victorian child in a starched cotton nightie, snivelling into a handkerchief as they’re pushed about in a creaky rattan wheelchair by a white-aproned, generously-bosomed nursemaid. No one wants to be that child. It’s embarrassing. Shameful.

And so, every time my throat gets scratchy, my nose tingles or an avalanche of fatigue hits me, I feel the shame starting to creep up my spine because I know what everyone will be thinking: not again. And they’ll roll their eyes and tut as if to say: why don’t you try eating more veggies, or, you know, buy yourself a spine and stop being a drama queen?—as if I wouldn’t have bronchial asthma and be on two inhalers at once if I just tried a bit harder to not be sick.

Prove it

The thing is, we have this culture (and I’m not sure if this is an exclusively British thing) where if you’re unwell, you have to really prove it to be believed.  Not just to employers (but especially to employers) but to anyone who asks you the small-talk classic ‘How are you?’. It’s only really socially acceptable to answer that question with ‘I’m good’ or ‘I’m fine’, or at a stretch ‘I’ve got a touch of Scarlet Fever but plodding on, you know? How are you?’. If you dare to say ‘Actually, I’m really not well,’ you’d better have a fancy Latin name for your ‘apparent’ condition, a medical certificate and at least three witnesses to back you up.

There is nothing I hate more than having to call in sick for work. I would rather drag myself in, sweaty and trembling with a temperature of 112 degrees then have to ring up and convince HR I have a sufficient reason as to why I’m not dragging myself in to teach Shakespeare to cynical teenagers for five hours. In fact, I have dragged myself into work when I should really have been at home, tucked in bed with an IV drip and half the supply of the local pharmacy in my veins.

I actually did go into work with bronchial asthma, whilst on two inhalers, and climbed the stairs to the top floor so I could teach in 30 degree heat for five hours of the day in an entirely airless classroom. Unsurprisingly, this resulted in having to abandon my Year 8 class half way through their lesson so I could pass out in the privacy of the stairwell. But better to come into work and collapse where there are witnesses that, yeah, ok, maybe you are kinda sick, than stay in bed at home and be accused of swinging the lead.

I’ve gone into work when I’ve had nausea and a vertigo hangover from labyrinthitis—propping myself up with one hand on the wall as I wobbled down the corridors and tried really hard not to throw up on the front row of my classes.

I’ve hobbled in when my toe has been strapped up after dislocating it yet again and I couldn’t even drive.

I’ve marked stacks of essays with a damaged ligament in my wrist that took years to heal because I couldn’t afford to give it the rest it needed.

I’ve taught, standing, for five hours a day, five days a week with back pain so severe that I cried in the shower every time I tried to lean forward to shave my legs because it felt like someone was ripping open my back with red hot iron nails.

For nine years I suffered miserably with an undiagnosed skin condition because, at eighteen, a doctor dismissed my concerns as, and this is a direct quote: ‘You’re just itchy PJ’. Subtext: suck it up and stop whining. Nearly a decade later, my current doctor—who should be up for a BEST HUMAN AWARD or something—put me on prescription antihistamine and sent me to see a dermatologist. It took the dermatologist three minutes to diagnose me with dermatographia—also called ‘skin-writing’, which is the most appropriate and coolest skin condition you could possibly have as a writer.

And of course, the first time I had COVID, I went back to work and tried to push myself through post-COVID syndrome, even though I felt like I’d been hit with a ten tonne truck and had all the coherent thoughts sucked out of my brain and replaced with treacle.

The point I’m trying to make, is that when I’m sick, I really am sick. I’m not making it up, exaggerating or trying to shirk adulting by hiding behind my symptoms. And yet, every time, there is this requirement to prove it; to appease the general scepticism of a society that sees sickness as a major character flaw.

I remember when I was in my third year of teaching, my doctor warned me (after my third chest infection of the academic year) that I had viral fatigue and if I didn’t rest and recover properly, I was going to catch something really nasty.

Of course, I ignored him, because I couldn’t be seen to be taking it easy and slacking off work. And, as he’d predicted, just five weeks later, I got acute septic tonsillitis and a fever that raged for about two weeks non-stop. My tonsils were so badly infected, the infection was getting into my stomach and making me throw up any food, drink or medication I tried to take. I had to be signed off work for six weeks and I was so physically incapacitated that my parents had to literally scoop me off my bathroom floor (after I’d vomited up my anti-biotics yet again) and take me to their place to nurse me back to health. Even then, they nearly called out an ambulance when they found me on their bathroom floor the following night, limp as a noodle, grey as a corpse, slipping in and out of consciousness and unable to recall anything but my own name and age.

The thing is, I distinctly remember at the time how dismissive my housemates (who were, like, my actual friends too) were about the whole thing. Not only did I not hear a single thing from them when I was recovering at my parents’ place (as if I’d just gone away for a jolly holiday) but when I returned home, they rolled their eyes and shrugged, as if to say ‘What a baby’.

Did your parents never let you play in the dirt when you were a child?

Why are you always sick?

You can’t be THAT unwell.

Isn’t it just in your head?

You need to toughen up.

At this stage of my life, you’d think I’d be over feeling embarrassed by my poor health record—because a track record like mine should really make you numb to it after a while—but I’m not. When I first developed post-COVID syndrome and found myself plagued by fatigue, I felt guilty about it, like maybe it was just in my head and if I bucked up my ideas I would get better. I spent six months feeling that way, and then the doctor classified my fatigue as chronic and referred me to the post-COVID clinic and I finally felt like I had something to hold up in my defence and say ‘I’m not making it up, honest, guv’!’

But then another year dragged by, and, although I got a little better, I’d been stuck in a cycle of boom & bust, over and over again, wondering if it’s possible to go back in time and maybe lick some pavements and eat some fresh dirt. Just as I was starting to think maybe I should put on a starched cotton night gown and climb into a rattan chair, my third referral finally got a response from the post-COVID clinic. Now I have a couldn’t-be-more-official official diagnosis of post-COVID syndrome and a lovely doctor’s letter listing all the support I’m entitled to for my recovery.

And… now my workplace has decided to put me on trial for the crime of having such a diagnosis. I’ve been summoned to HR court, to be interrogated on my absences over the past eighteen months. You’d think that my phased-return days, where I worked hard to gradually get myself back into work full time, would count in my favour… but they don’t. Actually, they count against me as days I was absent and therefore days for which I can be penalised with a stage one formal warning to improve my attendance or else lose my job.

I can’t wait. I mean, I totally have the energy and emotional capacity to deal with this on top of being chronically ill.

One of the potential questions I might be asked at my trial is: ‘What will you do to ensure you’re not off work sick in the future?’

Well, I thought I could start by playing in the mud more often, stop cleaning under my fingernails and maybe lick the door handles of the Year 7 toilets once a week?

Or, you know, stiffen my upper lip some more?

Honestly, I’m not sure what HR are expecting me to say. It’s not like they don’t know why I’ve been off sick… they’ve had enough sicknotes from me to wallpaper Buckingham Palace. And it’s not like I can predict the future or make any promises on how long my recovery is going to take. I have LONG COVID, not the common cold. No one has this craziness figured out yet.

I get that employers have businesses to run and policies to follow. I totally get it. But it’s the attitude with which those policies are enacted that is the problem. At the end of the day, I am being held responsible for catching a virus that caused a global pandemic and for suffering with the side-effects after having zero medical help, advice or support for eighteen months. This is something that I not only have to give account for, but is also punishable by dismissal should I not improve my health in the time and manner arbitrarily decided by my employer.

Once again, I have to prove that I really am sick; that I’m not slacking off; that I’m not using my symptoms as an excuse to get out of parents’ evening or playground duty; that I’m not on a medical note signing me off working after 1.30p.m. so I can go out partying until 4a.m on the weekend.

I feel like I’m a teenager again. And it’s mortifying.

I feel frustrated, shameful and pathetic enough without anyone else piling in. It’s almost as if people think that blaming and shaming a sick person is going to cure them of their ailment. Funnily enough, it doesn’t. It just demotivates you and adds to the anxiety, depression and stress you’re already experiencing.

I certainly have never chosen to be sick. When I was fourteen, I had whooping cough and pneumonia at the same time and I missed the entire first term of my GCSE courses. I went back to school on an inhaler, and I wasn’t allowed to wander too far from the main building at break or lunch in case I had a coughing fit and stopped breathing (something which had happened several times whilst I’d been at home recovering from the worst of the infection). I spent the next year and a half catching up on all the coursework and class content I had missed in my own time without a tutor, catch-up sessions or one-to-ones with my teachers. At the end of the first year, my tutor sat me down with my report and told me she thought my efforts to make up for the time I had missed were extremely admirable. Her recognition and praise bowled me over. It was a nice contrast to the ‘You should have eaten more worms’ attitude I usually faced. Sadly, she was diagnosed shortly after with cancer of the brain and passed away a few years after I left that school. But her words and her kindness have stuck with me after all those years because that was one of the few times in my illness-riddled life that someone saw how hard I was trying to make the best of a bad situation that was completely out of my control.

And, honestly, I could do with a little of that now. A little more compassion and a little less ‘let’s blame & shame the patient because sickness has to be someone’s fault’.

(I could go off on a related tangent here about how certain Christian groups are even worse for making anyone with an illness feel like it’s their fault, but I probably need a nap before I get going on that outrage.)

But never mind. Instead, I get to put into practice everything I’ve learnt from watching Law & Order and pull out my inner defence attorney so I can prove to HR that I’m doing my best to manage a chronic illness I never asked to have in the first place—that my sickness is down to bad luck and not because I didn’t spend my childhood playing in rubbish heaps and gnawing on raw pigeon legs.

Wish me luck.

On the positive side, I have finally connected, through something called the Hope Programme, with a community who is going through exactly the same thing that I am. I’ve been signed up for less than a week and it’s already a huge encouragement to read the stories of other patients with post-COVID syndrome and know that I’m not alone and I have no reason to be ashamed of my condition. One of the things we’re encouraged to do is have self-compassion. So I’m focusing on that and keeping my gratitude diary, to combat the slightly depressing year I’ve had so far.

At the end of the day, knowing you’re not alone is so important for getting through the changing seasons of life. A little understanding and compassion goes a long way.

So, thank you for listening, friends—let’s keep building each other up and figuring stuff out together.

Let me know:

• How are you doing?

• What joys or challenges are you facing this year?

• Did your parents let you play in the dirt when you were a child? 😉

I’d love to hear from you—about anything really—so feel free to introduce yourself and get in touch, either directly by email, or through the comment button below.

Much love,

PJ