This is ENTHUSIASM. It’s like a hug, only it’s an email. Here we like the things we like and we’re not afraid who knows it. Brought to you by journalist, author and former professional fairy, Kate Leaver.
Oh, hey. This feels like necessary context for anyone signing up to read my things at the moment. I’m recovering from Long Covid. It sucks big time, I nap a lot, sometimes I want to scream into the sky… but I’m also having a day where I’m at peace with it. I send my biggest, greatest love to anyone else with chronic illness + the people who love them. xx
The chicest way to get Covid is at a Harry Styles concert.
Marching on the spot in puddles of cheap rose, screeching lyrics into the grey London sky: “I could cook an egg on you,” “I know that you’re scared because hearts get broken.”
Looking at my photos from that night, I guess at who might’ve breathed in my direction. Much like you know which meal gave you food poisoning, I have my theory. It wasn’t during the trip there, on the tube with countless girls and gays in feather boas and cowboy boots, that I inhaled the particles that would change my life. It wasn’t waiting in the line for overpriced popcorn.
It wasn’t even dancing out the fear and frustration I’d been holding onto since the world changed while a 183cm-tall Manchurian pop star in overalls sang his little heart out in the pelting rain to 90,000 admirers at Wembley Stadium.
It was after that. When we were funnelled from the exit to the tube, in a stampede of sticky, sweaty pop music fans. I just know it. We were in that queue longer than Harry had been on stage. It rained, we sang songs, we admired a young woman’s sign that read “I sold foot pics for these tickets”. We were packed in so tightly against other people’s bodies it was impossible not to think of sardines.
As a rule, I do not like crowds. By nature I’m a dormouse of a person; I stay inside where it’s safe, only to dart out for the essentials. In this case, Harry Edward Styles was, yes, essential.
Seeing him live in 2022 was one of the only major risks I had taken since some guy allegedly ate a bat in Wuhan. I’d reached the brief, thrilling “fuck it” stage of my risk fatigue and decided to allow myself one huge, joyous, loud, wet night out.
And I don’t have the heart to regret it, even now, after all that’s happened since.
Recently, my boyfriend called me out for stomping around the house like a little storm cloud. “It’s my anniversary,” I said. “Oh,” he said. I cried, which I don’t do often enough for myself (usually, I need an external prompt, like Bill Nigh in the film About Time, or the thought of my small nieces ever experiencing anything bad at all).
I’d been sick a year by then. [Editor’s note: it’s now been 18 months]
My body is still fighting to recover. I read once that traces of the virus can hide where the immune system won’t think to check for them. In the tips of our toes, in the swinging sanctuary of a scrotum. In a detached sort of way, I think, “wow, science” but it frightens me to know so little about what’s going on in my body, this body, the one I sit around in all day.
What disturbs me most is not what we know about how chronic illness works; it’s the astonishing number of things we just do not know. Doctors and nurses and scientists are so brilliant. When I broke my arm, when I got a kidney infection, when I stepped on a fish hook as a kid and it got lodged into the soft underneath of my foot, I knew that medical professionals would know what to do. But the closer you’re forced to look at medicine, and the longer you spend in doctor surgeries, the more you realise how much there is left to know.
Our brains are like outer space, or deep sea; we know so much, and yet there are just so many mysteries. Chronic illness, inflammation, post-viral infection, how a body stores trauma, the way individual bodies respond to illness, and injury, and treatment. These are all things we do not fully understand. And I don’t just mean me, who barely understands what a molecule is. The brightest and best scientists in the world are scrambling to decipher the maddening behaviour of the human body. And while they do that (thank you, for doing that), those of us who have stubborn illnesses have no choice but to wait.
Two days after the Harry concert, I was walking my perfect dog in the park. “I need to stop and sit down,” I said to Bert, my dog, to whom I often talk out loud. I sat down beneath a tree - urgently, more like a tumble I had chosen to take. I was sweaty in a way that had nothing to do with the summer sun on my skin. I was dizzy, unsteady on my feet, and disgustingly nauseated. I was shaking and I needed to get horizontal.
Bert does not like to have his morning walk cut short. We have a small standoff, Bert making himself as heavy as he can, me tugging desperately on his lead whispering, “please Bertie, I need to go home, we can come out again later.” Afraid I might collapse, I put one hand under his butt, one on his chest, scoop him into my arms, apologise into his floppy caramel-coloured ears and speed-walk home. He looks at me with profound disappointment and begins the work of yelling at a comically small tennis ball he finds on the living room floor (it’s been designed for the diameter of a dog mouth his size and this makes him absolutely feral with excitement).
I, meanwhile, make it to the bathroom to shove the stick from an at-home lateral flow test up each nostril, scrape it against the back of my throat, push it into the clear liquid of a small test tube and daintily squeeze four droplets of the mixture onto a white plastic rectangle. Twenty minutes later, my timer goes off and I stare at the two very clear lines that have appeared on my test.
What follows are ten days of strange, hot, uncomfortable illness. My boyfriend and I huddled on the bed like speech marks.
This time immediately after Covid was not without joy. I went on a Merry-Go-Round, saw my niece eat her first ice cream, and finger-painted penguins in the back garden. I was happy. A cough hung around, sometimes I felt I couldn’t get enough oxygen, and despite declaring myself recovered, I passed out most afternoons for two, three, four hours.
Even as I felt myself struggling with basic activities, I held the mental picture of that negative Covid test in my head as proof that things were fine.
They were not fine. They are yet to be fine.
When I was referred to a Long Covid clinic, a kindly physiotherapist explained that most patients plateau at a certain depth of the illness and then, in his experience, about half of that cohort improve and the other half get worse.
I reached that plateau, I had accepted my depleted ration of energy, I had adapted as well as I could. And then I went much, much further into the illness.
I could not walk my dog. I could not speak to my mum and dad on the phone for five minutes. I could not answer a single email. I could not make it up the stairs without a rest halfway up. Things like listening, and talking, and eating, and sitting up, and thinking, exhausted me unfairly, dramatically, disproportionately. I would wake in the night with joint pain. I would wake in the morning with a desperate feeling like I’d forgotten how to breathe. The brain fog (a gentle term for what feels more like I’m wearing a helmet full of butter) was, is, can still be debilitating.
And the other symptoms that come and go as they please: splitting headaches, heart palpitations, gut pain, dizziness, flu-like wooziness, weakness, and something particularly punishing called Post Exertion Malaise, which means that any small expenditure of energy can send you to bed for days, weeks, even months.
A lot of this was new to me. Baffling, frightening, and alien. But the hibernation it demanded of me? The shrinking of my life. The withdrawal. The loneliness. The feeling of rage that sometimes makes me wish I could stand in a field at dusk and scream into the sky? That was familiar.
I’ve been here before. Time and time again in the three and a half decades of my life, I’ve had to retreat. I’ve missed parts of my childhood, school, university, career. When the pandemic first hit and we were told to stay at home, part of me thought: yes, okay, I’ve been in training for this all my life, if there’s one thing I know how to do, it’s stay indoors.
I joke that I have the constitution of a sickly Victorian child. A tarot reader told me I would continue to get sick all the time until I learned the lessons the universe wanted to teach me. My psychiatrist taps his notes and reminds me of past mental health diagnoses to explain everything. My childhood GP, who’s treated three generations of my family on my mum’s side, brings up my long record of infection on her desktop computer every time I visit. A reiki specialist says it’s trapped energy. An acupuncturist says it’s poor digestion. A lifestyle coach makes baseless accusations about peanut butter toast.
I just don’t know, and I’m sick of not knowing, but I’m also exhausted by the act of trying to find out. I’m tired of trying to understand why this is happening to me and to so many millions of others (last I read, there were 100 million of us around the world living like this).
Scientists are valiantly working on a cure and I very much doubt they’re wishing I could help by Googling “long Covid symptoms treatment” from my sofa. I cannot contribute much, beyond providing data on my symptoms and crossing my fingers from afar.
What I can do, though, is something I’ve always done. Especially when I’m in pain. Write things down about my experience, send them out like messages in a bottle on the waves, in the hope that they reach someone who is thinking to themselves, am I the only one who feels like way?
The thing that helps most is hearing about other people who’ve been through something like this. I scavenge for stories from people who’ve recovered, or know someone who has, or know someone who hasn’t. Less because I want to copy all their get-well tactics and more because I need proof that what I am going through is real. That this is not a fever dream.
My friend Dolly puts me in touch with her friend Jane, who tells me an actor from Succession struggled to learn one of their monologues because of brain fog. Someone I have saved in my phone under “Nice Tom” messages to compare notes on nap strategy. My friend Carlye puts me in touch with a friend of hers, who tells me that having a network of other clinically tired people makes all the difference.
One of the great challenges of illness like this is that empathy has its limits. Our brains forget what pain really feels like once we’re no longer in it, just as it’s difficult to remember what heat feels like in the middle of winter. Healthy, fit, able-bodied people can only imagine so far, what it might be like to feel altered, like this. There are certain things only people who know, know.
Every time someone tells me about someone they know who has had a long-term, relentless illness that’s taken them out of the usual momentum of their life, I add it to a cute, desperate log in my head. I think, there’s another person who gets it. There’s another person who knows. And if they know what it is to live with an illness that long outstays its welcome, in a sense, they know me. I am not alone.
I do not know when I will get better. If I had a deadline, or I knew how long this would last, it would be more manageable. I could plan and I could ration my hope and my fear. As it is, I get excited every time I feel the smallest bit better, and suffer a devastating optimism crash when I realize I’m not fully healed. More than the fatigue, and the listlessness, and the nausea, the not knowing is debilitating. And so all I can think to do is to work on finding peace in that uncertainty.
Spotify, play my Harry Styles playlist.
If you’d like to hear me speak more about my experience with Long Covid, check out this interview I did with legend on her terrific podcast, Rethinking Wellness. xx
ENTHUSIASM is a free newsletter by Kate Leaver. Kate is a journalist who has been published by British Vogue, The Guardian, Glamour and elsewhere. She’s the author of two non-fiction books and is working on her first novel. She’s represented by Jemima Forrester at David Higham Associates and she really, really loves her dog.
I’m so glad (also sad!!!) that it resonated with you. It’s why I wrote it.... hoping to reach some other people who get it. I’d love you to share it, thank you x
And yeah, it’s a very difficult one isn’t it, the constant risk analysis. Exhausting and confusing and isolating and boring and scary. I find I need to know so much detail about any outing or interaction. And miss out on a lot.
I’m also aware how much being out of the house and seeing people and sometimes being able to do fun things is like medicine to me, so I do gently take risks, ones that feel worth what it does for my heart ❤️
What if....? Or only if....?
I find it helps me to end that line of questioning with...then I wouldn't be the person that I am today.
I've spent decades mourning the loss of who I was in 1994.
And then, in significant measure due to what I was forced to endure, I landed on what I think of as the other side of ME (I promise, there is another side) and I'm not the same and while there was a lot of loss, I think I like the me that I am now more that I would have liked the me I was on track to become.
And yes, this is very real. It's not us. And this isn't punishment for going to a concert. Few people really knew what post infectious syndromes entail.
As a patient diagnosed with ME 26 years before COVID, I had nightmares about the legions of people that would join the ranks of other post infectious patients as the number of cases of COVID exploded. I talked with ME specialist who had the same concerns but no one had paid much attention to ME before COVID.
I'm not glad you're here but I am impressed with who you are and I'm glad you're doing what you're doing to give people hope. Personally, I know that hope is essential and my experience would argue that it isn't unwarranted.