It is the beginning of summer. It is hot but windy, as so many summer days are in London. It is that strange period between the first and second national lockdowns. COVID-19 cases are not as ubiquitous as they were in the spring, but they’re on the rise again, and no-one is paying any attention.
It is 6am and I wake up with a start at my partner’s house. I lurch forward in bed and try my best to catch all the vomit in my mouth before it escapes onto his duvet. I run to the bathroom, only I limp, because when I stand up I find there is a sharp pain in my stomach, sharper than normal, and deeper, creeping into my back and down my legs. My vision blurs and I fall over. This is the dreaded moment that my partner wakes up. I desperately don’t want him to see me like this.
In the bathroom, I vomit for hours. The intense retching, and then later, dry-retching, that makes you feel as though your body might turn inside out at any moment. The pain is worsening by the minute. It is searing through my body, and I feel completely helpless.
My partner begs for us to go to the hospital, but I keep saying no. I don’t deserve it, I say over and over again, it’s not a big deal, I don’t want to bother them. Eventually he just orders us an Uber and marches me toward it. I love him so much for this.
At the hospital, the pain becomes worse still. There is a line out the door of the emergency room, full of COVID patients and Saturday morning warriors. But when the administrative nurse spots me, she beckons me to the front of the line.
Wait here, she says, I’ll do get a doctor.
I don’t remember how I got there, but the next thing I know I am on the floor, writhing, crying, begging for someone to help me. The nurse comes back at tells me to get up, I can’t be near the floor, I’ll get COVID. A doctor arrives and says: take her to resus. I will learn later that day that this is short for the resuscitation ward.
They take one arm each and walk me through to a temporary bed, which they then wheel to resus. My partner has to stay behind—no-one is allowed anyone to accompany them in hospitals in 2020.
By the time I arrive in the resuscitation ward, I am barely conscious. A doctor orders someone to hook me up to two IV drips with fluid and vitamins.
She’s desperately dehydrated, the doctor says. She needs help immediately.
Someone hooks me up to the two IVs. The doctor says, inject some anti-nausea and morphine into the drip, then keep her on a fast-tracked bag of fluids for an hour. Its six hours’ worth of fluids that will enter my body in just one hour, he says.
This is the last thing I remember. I fall asleep as the morphine kicks in, and I wake up hours later, still in the same ward.
My white cell count is sky high, they say—something is really wrong. They keep me in for the weekend, then when my body has recovered I go home. We still don’t know what caused that attack, but it’s something I’m used to. I have lived with chronic auto-immune illnesses for ten years. I never know when the next hospital stay will be: tomorrow, next week, next month. Never much longer than that.
It strikes me now that the moment when I was on the floor of the hospital is the most honest I have ever been about my illness. Someone help me, please, I kept saying. I wanted so badly to escape my skin, but I couldn’t. I couldn’t get out and nobody could get in. The boundaries of the body are non-negotiable.
**
It’s been eleven years since I got sick. I’ve spent most of that time trying to deny the fact of it, trying to fight it off, trying to recover. I never once considered the toll that trying to recover might take on me.
It was 2009 when it started, and I was seventeen. I was admitted to hospital with excruciating pelvic pain as well as bleeding, vomiting, losses of consciousness. I have been in and out of hospital every few months ever since, and have been diagnosed with two serious illnesses.
I have thought so much about that first day, about what I might have done differently, had I known that everything was about to change. I’ve thought about what I would have decided to be, to love, what I would have dedicated myself to, if I’d have known I was living on borrowed time.
I think often about the fact that for so many of life’s worst tragedies, in the moment that everything changes, we aren’t aware of it. On that first day my mind was preoccupied only with the strange and immediate state my body was in, and how best to correct it so I could return to normal. I thought I would recover, but I never did. As the tectonic plates of my life shifted, I wasn’t even paying attention.
**
Some patients who are infected with the COVID-19 virus find they continue to have debilitating symptoms for months after the illness has left their bodies. They report crippling fatigue, pain all over the body, and particularly in the joints, inexplicable heart palpitations and a near-constant racing heart, diarrhoea, cramping, insomnia, and most of all, a terrifying brain fog. They report a loss of short-term memory, as if something has just disappeared.
For some patients, these symptoms appear with the acute phase of the illness and never go away. For others, they appear later, as the virus is leaving the body, as if the condition has morphed into something new.
Doctors don’t know exactly why some people experience long COVID, but they have a few theories. One is that the viral infection triggers an overactive response in the immune system—that the body keeps fighting and fighting even when there is nothing left to fight for. I know that feeling.
An overactive immune system can cause inflammation throughout the body—in the gut, in the brain, in the heart, in the lungs—and can cause all of the symptoms of long COVID.
Some evidence for this theory is that when these patients are tested, all of their test results seem to come back normal. Sometimes there are signs of mild inflammation here and there, but nothing entirely abnormal. An overactive immune system can do this, and can hide in plain sight. It’s doing what it was designed to do—it’s just doing far too much of it.
One thing doctors can be sure of is that these ongoing symptoms mimic a disease common to many people in the disabled community: myalgic encephalomyelitis, or M.E., formerly known as chronic fatigue syndrome. It’s a physical disorder that has, for too long, been dismissed as emotional or psychological. But it is not, it’s very real. And a lot of patients develop it after an acute illness or infection—one from which, it transpires, they never recover.
One theory behind what causes M.E. is that when patients get infected with a virus or other illness, cells in their brains called microglial cells, which control inflammation, can become permanently changed by the process of trying to fight the illness.
The illness leaves you, but the fact of having suffered through the illness never does. You survive the attack, but there is a cost to that survival. This is the case for all traumatic experiences, and will apply to all of us coming out of this pandemic, whether we get sick or not. So we have to face a question I have battled with for eleven years: what if we never get better?
The cells even change their shape, one doctor says. Jarred Younger, director of the Neuroinflammation, Pain and Fatigue Laboratory at the University of Alabama at Birmingham says that under a microscope, they become ‘spiky’. He believes they became an angrier version of themselves. Since I got sick, I’ve become an angrier version of myself, too.
**
Susan Sontag talks about those with lifelong illnesses as having a duel passport: one to the kingdom of the sick and one to the kingdom of the well. This year, we have all, I think, been given passports to the kingdom of the sick.
Whether we actually got the virus or not, whether we spent nights coughing and sweating or just bored and alone in lockdown, or whether we self-isolated in the best health of our lives but still found ourselves unable to go outside to exercise, we each got a small idea of what it means to be sick. But not sick in the way most people think about illness—something that will pass with enough fluids, enough rest, something that can be fixed. Something impermanent. Instead, we all learned what it’s like to be trapped inside a world of illness that we do not understand, that has no cure, no end point.
We all learned that to be sick, or to have a life controlled by sickness, is to be stuck forever in the moment that it happened. A still life of the moment of diagnosis, or the first symptom. That’s the feeling some of us had when we returned tentatively to offices in October and found leftover lunches, winter coats, to-do lists from March.
It is the moment when you’re staring at pictures of birthday parties or packed-out lectures theatres and think: what would I have done if I had known this day would be the last? How would I have squeezed more meaning out of it? What would I have told the people I love if I knew I wouldn’t hug them again for so long, wouldn’t feel truly connected to them in the way we were used to for so long, maybe ever?
It’s the moment when someone in another place, in an easier time, says something like: You’ll get through this. They say something like: Now’s the time to write that novel. Or something like: What doesn’t kill you makes you stronger. It’s a moment where you just want to scream: I don’t want to be stronger. I am strong enough. I just want to be free.
In her essay ‘On Being Ill’, Virginia Woolf writes:
‘”I am in bed with influenza,” he says, and actually complains that he gets no sympathy.
“I am in bed with influenza”—but what does that convey of the great experience; how the world has changed its shape.’
How the world has changed its shape.
That’s what it’s like every day in the kingdom of the sick. I’ve been here for eleven years, and I’ve never left. Sometimes I get day passes, but not often. This is where I live now.
I feel as though sometimes people think they can understand life-long illness by comparing them to a physical feeling they have experienced before. This is very human: yes, once I hurt there, too. That’s like when my chest felt like it might crack open. I remember that one time my heart raced and I didn’t know why.
But it’s rooted in a misunderstanding of what it’s like to be sick—it’s not the physical sensations that set us apart, it is their permanence, their unpredictability. It’s never knowing what might happen next. It’s the isolation that comes with a life-long loss of control.
I am not writing this to complain about my illness; I’ve made my peace with it. But others have not, and for them, I want to ask you if you will remember what it felt like to be here, with us, just for a moment. I don’t want you to stay here. I want you to move on as fast as you can—have parties and meals and make spontaneous plans and stay up all night just to talk to someone you love. I want you to do all the things I miss the most. I want you to do the things I would give anything to do again. I want you to have that feeling of getting something back after you were forced to miss it with all of your soul.
I don’t want you to stay; I would never ask you to do that. I just want you to pause here and look around. I just want you to remember the sounds and smells, how it changed you.
Woolf writes about realising, again and again, in illness, that there is a fundamental myth about the world that has been shattered.
That illusion of a world so shaped that it echoes every groan, of human beings so tied together by common needs and fears that a twitch at one wrist jerks another, where however strange your experience other people have had it too, where however far you travel in your own mind someone has been there before you—is all an illusion.
What you realise, in illness, is that sometimes there is a genuine chasm of understanding that emerges between you and those around you. That some experiences are so strange, so distinctive, that it is not the case that others have felt them too.
Maybe, in giving us this cruel year so defined by illness, we were offered a way to bridge that gap, a way to understand the lives of those in the kingdom of the sick, and maybe that’s a gift.
**
I am still realising, again and again, that losing control of my life is the hardest part of getting sick.
When I told my therapist about my time on the resus ward, she asked: Why didn’t you go to hospital sooner?
I said: Because I didn’t feel like I deserved to be helped. Because I have been here before, and I have survived, and I don’t want to burden anyone.
She said: Why do you think you don’t deserve it?
I said: Because I know I caused this somehow. Maybe I ate the wrong thing, maybe I exercised too much, had too much wine. I know I did something wrong.
She said: Okay, let’s say you caused it. Why should that mean you don’t deserve help?
I said: It’s about punishment. If I suffer through this, I’ll be better at avoiding those things next time.
I need to keep learning what it feels like to be alone inside yourself, saying: I’ll do anything. I’ll give up anything. Just make it stop.
I paused for a beat.
I said: I have to keep doing that until I learn.
Her eyes softened, saddened.
She said: Is it possible that you are choosing a narrative that involves self-punishment because it’s familiar to you—because even though it’s painful, you know how it works. You know how to suffer.
I replied: What do you mean?
She said: The story you are telling me is about how you want things to be, but I’m sorry to say that it’s not how they are. The story you are telling me is one where you are in control.
If you change your behaviour, the attacks will stop. If you just learn to be better, the hospital visits will stop. You have the power to change your circumstance.
Then she said: The story you are telling me is one you are holding on to in order to protect yourself from the one that frightens you even more. The story you are hiding from is the one you are most afraid of, the one that says: this is not my fault. Nothing I do will change this.
The story that says: today my body broke down so completely that I needed resuscitation and I don’t know why. The story that says: I don’t know what’s happening, and I don’t know what will happen next.
And she’s right. Every time I reach for it’s not my fault I also come face to face with and that means I can’t change it. That’s the loneliest feeling in the world. We all know that now.
What I learned from my therapist that day is that even here, even now, after eleven years of practice, I am still trying to wrest back the control I have lost. I am choosing to tell myself a story that turns me into a villain just because a villain has autonomy. A villain is the subject, not the object, of the story. A villain has free will, has a plan, a timeline, an understanding of the rules that govern the world and how to manipulate them. I blame myself because then at least there is someone to blame, at least there is order.
And that’s what I want to be understood about illness. It’s not the pain that defines the sufferer, although the pain is certainly important. It is the feeling of wrestling between one story and another, slipping between worlds, battling to create meaning out of total chaos, staring into emptiness and knowing that nothing and no-one will be there to stare back at us.
**
Assigning control is, at its heart, about meaning. It’s about praying to a god who ensures that everything means something. That everything is somehow generative, somehow orderly, somehow important. But some things don’t mean anything, and illness is often one of those things. Sometimes suffering is not profound, and sometimes pain and sadness are not interesting. Sometimes pain is just pain, and illness is just illness, and it is truly as empty and suffocating as that.
I have come to believe that it is because illness has no meaning that we are so frightened of it, that we cannot bare to look at it directly. Because we can’t make something out of it, because we can’t make it mean something.
Susan Sontag says that ‘death is the obscene mystery, the ultimate affront, the thing that cannot be controlled. It can only be denied.’ As a result, she says, we force illness to become metaphor. We make it un-real, something that only exists to signify something else. We turn it into something that is related purely to the human mind—metaphor—because we cannot bear to accept that it lives outside meaning, in the human body.
This is why it’s so hard to catch a glimpse into the kingdom of the sick. Because until something happens, until you get that passport, it’s almost intolerable to look at. Like looking directly into the sun, we are afraid it will blind us.
I used to blame people around me for not understanding how lonely it is to be sick, how isolating, but I don’t anymore. It is the most human thing in the world to turn away from illness, to baulk at this most profound and permanent loss of control.
But that changed this year, the year when so many of us were thrown into chaos. Just for a moment, everyone felt what it is like to experience illness not as metaphor, but as something tangible. Everyone has been forced to see things differently, and maybe there is something transformative in that.
**
Since I got sick, I have been reluctant to commit to anything because I am deeply afraid of letting people down and I know my body cannot be trusted. But this year, that changed. When everything moved online, I found myself able to overcome my fear of new experiences because I knew that I could engage with them from my bed; even from a hospital bed if I needed to. I started a weekly fiction writing workshop for the first time in my life. I started doing regular exercise classes on Zoom from my bedroom floor.
I make a living as a writer, which means that one of my favourite things to do in all the world is attend book events and listen to my heroes talk about their work. But so often, too often, I can’t make it. I can’t sit up for an hour at a time, I can’t get out of bed, I don’t trust my legs to carry me. So time and again, I buy tickets and then let them go to waste, watch the clock strike 7.30 and think about all the people sitting in a room, reflecting together, that truly magical act of intimacy, without me.
But not this year. This year, as literary events transferred to Instagram live and Zoom, I found myself able to attend every single one that I wanted to. Suddenly I was able to access so many ideas and conversations that I would have otherwise been locked out of.
These practical accommodations made a huge difference to my life as someone with an intractable illness. But something else changed, too. As the world shifted and became more accessible to me, our language and shared understandings of that world became more accessible to me, too. Suddenly, writers and exercise class leaders and podcast hosts were talking about the things I spend so much of my time thinking about: loneliness, isolation, immunity, fatigue, sickness, recovery. I felt welcomed into every conversation in a new way, like for the first time since I got sick, we were all speaking the same language, just for a moment.
**
When you are admitted to a hospital, something strange happens. You enter through one door— usually, in my case, through the emergency department—and from that moment on all the fundamental parts of the universe change their shape. Gravity feels different when your only mode of travel is lying flat on a bed, wheeling between rooms that all look the same but also indicate some important shift in your circumstances. Up and down cease to matter, left and right, everything falls away. Corridors are endless when all you can see is the ceiling. Lifts transport you to different worlds, conversations happen upside-down. Clattering sounds take on the comfort of silence and actual silence becomes deafening.
It is a transition between worlds. Hospitals doors are slippery portals into another existence, another self. Friends on the outside become far away, unreachable. They come with flowers and even then, you have a strange moment of realisation that they walked in here, on human feet, up stairs through corridors, following signs, checking watches, emailing bosses. Different creatures, not the same as those who came in on wheels.
In hospital, there is no pain. No physical pain, anyway. There is morphine and numbness. There is relief. But there is no joy, either. No contours, no surprises. A regimented existence of eating and describing symptoms and sleeping and swallowing tablets in the same order, again and again and again and again.
In hospital, each day bleeds into the next. There is nothing to mark one week from another. Narrative arcs crumble and disappear. Everything recognisable disintegrates, the world, the body, the mind.
When you leave a hospital, you look inquisitively at the things you hastily packed, before you knew you wouldn’t be home again for days or weeks, before you knew that the person you were then would never come home at all. You look at the things you had thought you mind need and think to yourself: how different I was back then, how everything about me has changed.
I think this is what lockdown felt like for so many of us: monotony, boredom, disintegration. I think in this way, we were all initiated into the kingdom of the sick.
**
I know this is a paradox—I am writing about something that I claim to be meaningless and seemingly asking you to draw meaning from it. But maybe I’m not asking you to understand it, maybe I’m just asking you to ponder to, to confront it. To stare squarely into the void with us. It doesn’t need to be transformed into something better than it is, it just needs to be given a place to exist, to rest, to be. A place where it can be honoured instead of avoided.
In 2020 there was untold and unnecessary suffering. Nothing will bring the dead back. I am not saying we should find a way to see something good in that—there is nothing. No meaning, no sense.
But there are elements of it we might be able to learn from. Because here is something beautiful: perhaps when the universe cruelly crafted a year in which you were all forced to spend time in our world, we all might have learned how to better allow us to spend more time in yours. Perhaps those boundaries have become more fluid, perhaps we have learned a new language with which to send dispatches between the kingdom of the sick and the kingdom of the well. Perhaps we have found a way to connect, a liminal space in which to exist together. There has to be something meaningful in this.
It’s not just good for us, but for you, too. Because visiting our kingdom gives new clarity to your own. It’s a perspective that will change you, if you let it. It will make everything matter more, except the things which matter little, which will cease to matter altogether.
Sontag is right, it is violent to force illness to be a metaphor, to turn it into the least tangible thing. To force it to have no earthly existence outside of what it means. Perhaps 2020 can teach us to see illness instead as the most corporeal thing, as the body itself. Something that is there whether you wish it to be or not, something that exists independent of human thought. Something fleshy and complicated, something that cannot be denied or obligated through the sheer force of human will. Just like the kingdom of the sick, it exists whether we think about it or not. Let’s give it a break from meaning, and let it just be real. Invite it in. Make it comfortable. Let it just sit there with us, without demanding that it put on a performance or become something other than it is.
Looking squarely at illness is terrifying, but it is also clarifying. And it’s honest. It’s where empathy and connection live, because it’s the only way to travel between worlds. If there’s anything we can learn from all of this, let it be that.
In some ways, we will learn, like I did many years ago, that we may never recover from this. Sometimes the fight changes you. But that’s okay, as long as we let ourselves acknowledge it. Give it life. Give it a body and not just a meaning. Only then will we find peace.
Lucia Osborne-Crowley is a writer and journalist. She is the author ofI Choose Elena (Allen & Unwin, 2020) and My Body Keeps Your Secrets (Allen & Unwin, 2021).
