Grant Stewart: My experience of covid-19—not just another experience

I don’t have an angle.

What I mean is, when I was asked to write an article about my experience of covid, I wanted to come up with a fresh journalistic angle—I didn’t just want to write another My Experience of Covid piece.

An angle has eluded me, though. They’ve all been done for now. The new angles we find as we learn more will probably be scientific, sociological, political. Not really my areas.

But that’s not why I don’t have an angle. Angles are straight. I’m not thinking straight. I think it will be a long time before I can think straight about, well, My Experience of Covid.

So, no angle. More of a swerve. A sideswipe of covid so intense and disorientating that I don’t actually want to write about it. On the other hand, it won’t leave my head. So I might as well try to chase some of those thoughts out onto the page . . .

So I didn’t have an angle. I’m not entirely sure why I didn’t want to write My Experience of Covid. I think I just didn’t want to sound whiny: “listen to how I suffered.” But I’ve read a few of those stories and they don’t feel whiny. They resonate.

But they resonate because it happened to me, too—I had a pretty severe brush with covid. But there are many people out there with whom none of this really, viscerally resonates—just go to any public place where people are making no effort to keep apart; people who think they are invincible. Another Suffering piece? People won’t get it.

What would make people get it? I was pretty sure what wouldn’t work: the purely medical, scientific approach—trotting out a list of symptoms. On the other hand it’s the one thing I haven’t tried when trying to explain my experience to friends (I’m pretty sure none of them got it). So here goes. Symptoms. List of.

Now, by the age of, say, 30, most adults have had a seriously unpleasant (if not necessarily unpleasantly serious) illness. Maybe a persistent bad fever with hallucinations; a chest infection, with a painful cough, maybe with scary breathing problems; or severe systemic pain; vomiting and diarrhoea; dermatological problems; unusual bleeding; extreme weakness or fatigue; or something involving massive weight loss and muscle wasting; taste and smell disorders; frightening paraesthesia; joint pain.

We’ve all had one or two of those things. They’re in our lexicon of experience. On their own they’re not alien. What is alien is having them all at once over many weeks. That’s part of what severe covid is: it’s 5 or 10 illnesses at once.

Now throw into the mix that this is new and unknown, and that for most people there’s no meaningful treatment or cure; that you might suddenly get worse, and not recover. You’re facing death and there’s nothing anyone can do. That the other part of severe covid.

And that is my main abiding experience of covid: that it’s not in a hurry to leave my head.

That’s something else that people don’t get. We talk a lot about isolation these days. Being alone for weeks while severely ill is bad enough. But the isolation of experience is like suffering the whole thing a second time. Feeling alone because you’ve been through something that most people don’t and can’t get. Alone in your head.

Maybe that’s why I took photos when I was sick. Yes, that’s right, I took occasional selfies of my sick self. Why? Maybe I thought that they, more than words, might help people to “get it”. Maybe I wanted a record of this thing that seemed so huge in my experience, and that I wanted other people to get.

I’m also pretty sure that (alone in person and in my head) I somehow believed that the photos were keeping me alive. I even took a couple in hospital. Some kind of illogical proof of life. Who the hell does that?

Someone who is angry and scared, of course. Someone who is clinging onto anything, even his own image on his phone. Funny what seems real. What seems solid and alive. Your phone. Your selfies.

Am I any closer to an angle? To thinking straight? No, not in a coherent journalistic sense—this isn’t all going to knit together in the last paragraph: I can’t make myself focus on one aspect of all this and write about it. Of course, that’s probably my angle—that that’s what something like this does to you. It knocks all the sense out of you; all the acceptable perspective; all the stories.

And it leaves you, of course, with the one story you didn’t want to write. Your Suffering piece. Because you have to try to get it out of your head . . . 

Mid March 2020. Cough, fever. And no ordinary fever. Over 40 degrees for 9 days.  A call to NHS 111 on day 4. A doctor will call you back within an hour. (The call never came.)

Struggling to breathe, random vomiting, tasting chemicals in water, smelling nothing, loss of appetite, numbness and pain in my legs—pain everywhere, actually. By day 4 I could barely stand, let alone walk. By the morning of day 7, gasping for breath now and completely hollowed out (so I thought) by the fever, I called an ambulance.

You can’t have an ambulance, the voice said, because you can still breathe. I could breathe, yes. But my breath was valuable, rationed, not enough spare to explain that, if I couldn’t breathe, an ambulance would not be my required vehicle. You can’t have an ambulance. Take paracetamol. Call ended. Hope drifted away.

A doctor from the London Ambulance Service called me back an hour later. He asked a few questions and did something that doctors don’t always do: he listened. I could barely talk, just squeezing out a syllable on every third or fourth pant. Which made my point.

The doctor told me there were still no ambulances—the crisis had devoured them—but that I should get myself to A&E urgently. I called my ex-wife (we’re still great friends, so you needn’t feel awkward) and she had me there fast.

The nurse didn’t waste time. Front of the queue, room in Major Injuries, central line, ECG, bloods, x-ray, painkillers, and most important, the feeling that I was in the right place, and getting help. I relaxed. I almost breathed easily, so to speak. Finally. It didn’t last.

That evening a doctor told me that I didn’t have pneumonia and didn’t need intubating, so I could go. There was nothing they could do until I got worse. He added that testing “wasn’t needed” unless I was being admitted overnight.

Well, knowing what we know now about false negatives, he might have more accurately said that testing wasn’t useful. But even so.

The doctor added, that I should come back when my breathing got worse or I started to cough up blood.

My ex-wife answered the call again and drove me home in silent disbelief. There are stairs up to my flat. I don’t know how long it took me to get up those stairs, but I can still hear the animal noises from my lungs as I tried to climb them.

My ex-wife stayed until I’d stabilised a little. Then she went back to our teenage son, who lived with her exclusively during my illness. The next time he saw me, weeks later, he was clearly shocked by my condition and didn’t want to be near me. I tried to understand. But I was crushed.

What my ex-wife didn’t tell me at the time was that, after leaving me that night, she cried for a long time. And then she began to plan how she would raise our son alone. She didn’t think I’d survive the night.

The fever abated on day 9. That should have been a huge relief. But other symptoms were just warming up. The first visitor was diarrhoea. It was weeks before I could eat. When my weight loss hit 30 pounds I stopped weighing myself. After the diarrhoea, my first experiments with food brought, in a lightning-fast U-turn, a week of cripplingly painful constipation.

That pain had company. There was the simple pain of turning over in bed, which made the lungs shift and scream. There was the pain of my skin, which seemed to feel every thread of seat cushion and bed sheet as if it were heated metal. There was the ever-present pain of coughing, and the pain on a whole new level of breaking a rib from coughing, and the all-over blanket of pain from sleeping upright in a chair for a week because I couldn’t lie down because of the broken rib. Put it all together and you have, well . . . I hadn’t known they made suffering that pure.

As the doctor had predicted, my breathing got worse, and I coughed up blood every day for 10 days. But I didn’t return to A&E.

I took a risk, partly based on the hunch that the blood I was spitting into my hand wasn’t enough to impress the doctor, and therefore probably not too serious; but mostly based on my unscientific, qualitative assessment that, if rejected by battlefield triage a second time, I would not be able to hold it together. I didn’t go back because I couldn’t face being sent home again.

After what seemed like an age, my symptoms began to abate. I started to eat more than soup. Over about 3 months I gradually “recovered”.

But as the physical symptoms moved out, the mental ones took over; what I can only describe as flashbacks. The suffering replayed on an endless reel every time I tried to sleep. Around week 7 or 8 I made my first foray outside my flat, hobbling to my local shop. 

Four months have passed since my first symptoms. I’m back at work (from home), but I still have painful joints in my fingers and toes, paraesthesia in my legs, and lungs that punish me if I do too much. My head is often . . . unclear. And that’s My Experience of Covid, for what it’s worth.

As a writer, you’re primed that your one guiding principle is story. Stories are how people make sense of their lives. They need to think there’s a narrative thread; that there is any sense. 

It’s a comforting approach, and it makes for coherent copy, but it’s cobblers. Our lives are not stories. They don’t contain stories besides the ones we add and mould to suit our angle. Never let the truth get in the way of a good story, they say. My covid experience is not a story. It made no sense. It isn’t over, either. I still have covid in my head. And I still don’t have an angle. And I wonder how many people really get it. Does this help?

Grant Stewart, Consumer Health and Multimedia Manager, Knowledge Centre, BMJ.

Competing interests: None declared.