You Can’t Wish A Disease Away: The Trials And Denials Of Living With Long COVID

Alex Vickery-Howe discusses the persistent impact of COVID-19 and the much deeper, more disappointing impact of people who refuse to believe it exists.

I’m sitting in a sterile room. I have a cup of decaffeinated black tea, a painting of an empty beach and three cameras to keep me company. Well, I’m sure there are people behind those cameras. They’re stuck here all night too.

I have wires attached to my head and to my legs. They’re measuring my movements as I sleep. Maybe they’re looking into brain activity. Imagine if they could watch my dreams.

Down the hall, a man is shouting: “I’m not taking the test! COVID was years ago, mate!” He’s scared of the RAT.  The man is built like a tractor, but a teeny widdle swab has him throwing a wobbly. “It hurts my nose!” I wait for the part that I know is coming. “COVID is a farce! The government made it up to control everyone! It’s not real!”

There ya go.

I close my door. There are five of us in the lab. I haven’t met them all, but the man next door seems nice. He has dementia, and like me, he is no longer allowed to drive. We make small talk as we wait for instructions. I wonder if guinea pigs do this.

Nobody knows exactly why my body is shutting down, but most agree it is a result of Long COVID.

At the height of the pandemic, I caught COVID three times, and the last one stayed with me. I pushed through for a few weeks. When climbing the stairs, I ran out of breath. I told myself to spend more time at the gym. When tying my shoes, I felt a phantom fist kneading into my lungs. I told myself to stop ordering nachos. When picking up the dog – Spacey is a little plump but a half-Havanese isn’t exactly a German Shepherd – I felt the kitchen swim in and out of reality.

It wasn’t until I fell asleep on my office floor that I acknowledged there could be a problem. When I say ‘fell asleep’, I’m not describing an afternoon nap. I mean barely mustering the energy to lock the door before I was unconscious on the carpet, only to wake up hours later, disoriented, gasping for air….

My GP made me say this aloud. It took her forcing me to speak it clearly before I would admit that it wasn’t just ordinary fatigue. It took a few more visits for me to admit that it wasn’t an isolated incident. I’d passed out cold on that office floor a few times. I’d collapsed at home in a similar way. I’d forced myself to keep my eyes open during meetings, fighting with every scrap of will, and occasionally running out of breath mid-sentence.

Friends have said, “Oh, I nap too. It’s age.”

No. It isn’t.

I’ve tried to resist reading too much of the research around this. Forewarned is forearmed, but my mind races when I explore too much of the material. My mind isn’t great at the moment. There’s a constant fog – a sense of not ever being entirely awake – and sometimes songs play on repeat, no longer inside my head but audible in a way they shouldn’t be.

Ideas and intrusive thoughts crash together, as though my brain is taking in too much information and unable to process it sensibly. The clearest metaphor I can think of is a thousand people shouting while they all throw paperwork at my head.

When I’m about to go to sleep, I see people in my bedroom. If I’m lucky, they’ll be strangers who’ve come to choke me and not old friends reminding me that they died years ago, and I wasn’t there to help them. The word for this, I’m told, is parasomnia.

My mind is reacting to my body. It’s an oversimplification to assume that the two are separate. I see people coming to choke me because I no longer breathe properly in my sleep and my body is in a state of distress. I’ve been wearing one of those very sexy Darth Vader breathing machines for well over a year now, which does help. But a breathing disorder doesn’t account for everything.

I’m dizzy. Always. The horizon spins around me and people blur at the edges if I look at them too long.

My temples throb.

And I’m tired. Not just tired, but dragging-my-feet-tired, struggling-to-keep-my-head-up-tired, snapping-at-my-partner-if-I-can’t-crawl-away-to-my-bedroom-tired. Anyone who calls that a ‘nap’ would be rightly ashamed were they to experience the difference firsthand. Naps are restorative. Sleep attacks are terrifying.

If I take a walk, even a short one around my immediate area, I return home as if I’ve come back from a two-hour hike. Ridiculously, I was hiking for a while, telling myself this was something I could still do. I couldn’t. Playing pretend left me sleeping for the rest of the day.

My own recalcitrant nature has probably made all of this much worse by refusing to concede that any of it is real. A friend who works in public health told me some weeks ago that I’ll end up bed-ridden completely if I don’t “get my stubborn butt into gear and stop pushing through this”.

My butt is very, very stubborn. The rest of me is keeping it company.

I’m no outlier though, because we’ve all decided not to believe in Long COVID, just as we spent decades refusing to believe in ME/CFS (chronic fatigue), which – again, I’m told – may be a related condition, or part of the same underlying mistake a body can make. I don’t know.

What I do know is that it’s hard to fight something you can’t see or even confidently name. I’ll happily outwill an enemy into submission, but this is an invisible beast that lives inside me now.

And it’s winning.

Other people can’t see it either, of course. I don’t let them. Or I didn’t let them, until it became impossible to act my way through it. Even friends trying to understand will offer quick denials: “Maybe it’s something you ate”; “Try a glucose drink”; “Anxiety?”; “Just keep going and it’ll get better”; “Well, we’ve all been tired at work lately, Alex.”

Maybe it’s the hallucinations, but beneath that bad advice I think I can hear what they’re really saying to me, and to themselves: this can’t be real, this can’t be real, this can’t be real, this can’t be real, this can’t be real….

Denial has been one of the most disappointing parts of the COVID pandemic, and one of the most frightening. When the world should’ve been pulling together, we had negligent leaders cheering a lethargic vaccine rollout (thanks ScoMo), idiots openly lying to their people about the severity of the disease (thanks Trump), and antivaxxers screaming in the streets because they refused to accept empirical reality. Many still do.

Look, we all missed house parties and coffee dates, but the street morgues should’ve given us pause.

Not being able to work has hit surprisingly hard. You think getting time off would be cause for relaxation, and initially it felt a bit like that. I was reminded of being a sniffly kid sent home from school with a sick certificate to watch Phil Donahue (God, I was old before my time), Trapdoor and SuperTed to my heart’s content.

But then….

Shouldn’t I be strong enough to hold onto my job? Am I letting others down? If I concentrate with all my internal reserves, surely I can get up to the carpark without stopping at several base camps along the way….

When talking about work, one colleague honed in on the real injustice: “We don’t have the excuse of being sick.” That was uplifting. I’d gladly swap places, if he was interested in collapsing in public on a bad day, or struggling to stroll around the block on a good one.

You can’t get angry. It’s hard for people to empathise with an experience that seems so sudden, so alien, and – still now, even to me – a bit made up.

All of it, of course, feeds back into one’s own doubts about what is happening. Some days I wake up and declare, “This is stupid! I can outthink this!”, only to end up foetal or fast asleep by midday. Other times I worry that ‘people are getting shitty’ and push myself to complete tasks that, really, someone else could pick up.

Student emails are especially difficult for me to ignore. I found myself working hard to help a student complete her resubmission in order to process her visa in time, while I was supposedly on sick leave. I don’t regret doing that, and I don’t pity myself, but I paid the price for my butt-stubbornness a few days later when I had to pull my car into a side street and curl up by the side of the road.

I’ll spare you the forensic details, but I will say it’s possible to be half-asleep and violently ill in the same moment. It’s also possible to be physically and emotionally shattered, while also being outside yourself and finding it bizarrely hilarious….

Well, you just had to pass out by a children’s playground, didn’t you, Alex?!

I’d witnessed a former teacher struggling with Long COVID, prior to my own condition, and his change in personality, while short-term, was marked enough to convince me that this disease is as crafty as it is shocking. I’m not a spiritual person, so I’ve never really bought into the idea that there’s a deeper part of ourselves removed from the meat and bone, but these changes cut to the core of a human being. They mess with one’s sense of an essential self. I’m not weak. I’m not lazy. Except, now, I am.

You definitely learn who your real friends are. Some have flooded me with concern; people I haven’t seen in years reaching out every day, calling from overseas or interstate, or coming down to meet me at the café opposite my apartment. Others have disappeared completely – the weather no longer so fair – perhaps unable to stomach the stark sickness of a friend they don’t quite recognise, or unwilling to concede that COVID isn’t as make-believe as they may wish it to be.

At the same time, strangers – including nurses, all of whom have been kind, many of whom have been funny – have been perhaps the most helpful. The specialists with their academic interest have been oddly comforting too, reassuring me in their lengthy letters to my GP that this is not only real, but chronic.

People at work who I didn’t know so well before have proven to be an enormous source of support, offering to do anything they can. Managers who should be the most annoyed at my unreliability have made it clear that they understand and want me to put my health first. It’s a curious quirk of the human condition that those who call themselves ‘empaths’ fade into the ether when shit gets real, and those who seem superficially aloof or stalwartly professional can provide the greater security.

The kindest stranger of all was the random guy who saw me from his window, lying on the roadside, and came charging up with a towel and a water bottle. Between my heaves – yes, yes, I promised to spare the details – I was at pains to assure him that I wasn’t drunk or high. He assured me in return. Sometimes, all you want is for someone to say ‘I see what’s happening to you. It’s not in your head.’

I offered to give the towel back. I don’t blame him for not wanting it.

My GP has been outstanding. She has forbidden me from going near my car, at least until we’ve run more tests, and she has given my partner – who is also outstanding, never to be taken for granted – an imaginary ‘red card’ as a way to stop me from talking myself back into overworking, or denying the obvious downhill slide I’m on.

My own nature keeps fighting back. This is sometimes a blessing, as surrendering completely doesn’t feel right either, but can slip into a curse. Until recently, I was still going to the gym, still planting palms, still playing down every new symptom… and thinking that if I ignore it, I’ve beaten it.

Perhaps more than any, the most confused people in my life are those who say, ‘Alex, how do you find the energy to write?’ From my point of view, that’s a crazy question.

Writing is who I am. As my body lets me down, the strongest weapon I still have is my ability to communicate. I do this partly to remind myself that I’m still me, partly because Trump is still out there and exposing his dishonesties has become a compulsion, partly because I’m hoping to connect with a wider world beyond the confines of my bedroom walls and… mostly because I’m running out of things I can still do well. Of course I’m writing.

In the context of Long COVID, those of us who know it for what it is, who carry it every day and feel its weight inside us, need to speak out – as clearly and firmly, even obnoxiously, as we can – to remind everyone else that it really does exist, and it can affect whomever it chooses. We are still in the early stages of this phenomenon and we’re blind enough without deliberately applying blinkers.

Photographer and long-term ME/CFS sufferer Whitney Dafoe has created a blog to raise awareness about these issues. I’m not, for a millisecond, likening my comparatively mild condition to what Whitney has endured over several debilitating years, but I am applauding his bravery in putting himself out there. Just as I applaud my editor, Chris Graham, who has his own post-COVID story. Just as I applaud my friend as she writes on the subject, and I applaud all who’ve come forward to put their hand up to speak the truth. I don’t mean ‘your truth’ or ‘my truth’ – spare me that limp expression – but actual, objective truth that can be measured in medical and scientific terms. The rejection of that truth is the embrace of ignorance.

Spreading the word that there is something real to discuss feels like a contribution worth making, even if I’m still unsure to what extent my own symptoms connect with this overarching narrative… but there’s that denial again, right? It’s a tic I can’t shake off. Damn my stubborn butt.

We have historical precedent for this. Our popular understanding of the Black Death may be that it was a single, sweeping event… but it was, in fact, a reoccurring disaster, cascading in waves across Europe. In addition to the lingering sickness, there was the economic upheaval.

The initial outbreak of COVID-19, likewise, disproportionately targeted those from low-income demographics made vulnerable physically, by lies and viral conspiracy theories, and socially, by a system that has long divided the population along class lines. The continued denial of this new threat – the hidden pandemic of Long COVID – poses a much greater challenge to us all, as it infects a global population who have once again embraced the myth that plagues rise and fade quickly. This is exactly the ignorant nonsense that Trump and others peddled during the infection’s early days.

It is a simple fact that pandemics, unlike what we see in the movies, do not have a neat three-act structure. They tend to stay long after we tell ourselves the credits have rolled.

Time will give us the final insight. Time and research. Governments the world over need to invest some funding in this area. If the language of science is distrusted, the language of medicine too opaque, the language of empathy holding little pragmatic value… then let’s try the language of capitalism: there will be a tangible economic impact if more and more of us are conclusively and irrefutably unable to work. Nobody wants to see the economy crash. Not even Trump, assuming he knows what the economy is (sorry, I had to get one solid dig in).

For me, the most important part of all this is staying attached to the world, if only remotely.

I may be shutting down, but I won’t be shutting up anytime soon.