{"id":48073,"date":"2020-07-20T17:04:03","date_gmt":"2020-07-20T16:04:03","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=48073"},"modified":"2020-07-22T18:23:39","modified_gmt":"2020-07-22T17:23:39","slug":"grant-stewart-my-experience-of-covid-19-not-just-another-experience","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2020\/07\/20\/grant-stewart-my-experience-of-covid-19-not-just-another-experience\/","title":{"rendered":"Grant Stewart: My experience of covid-19\u2014not just another experience"},"content":{"rendered":"

I don\u2019t have an angle.<\/span><\/p>\n

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\u2014I didn\u2019t just want to write another My Experience of Covid piece.<\/span><\/p>\n

An angle has eluded me, though. They\u2019ve all been done for now. The new angles we find as we learn more will probably be scientific, sociological, political. Not really my areas.<\/span><\/p>\n

But that\u2019s not why I don\u2019t have an angle. Angles are straight. I\u2019m not thinking straight. I think it will be a long time before I can think straight about, well, My Experience of Covid.<\/span><\/p>\n

So, no angle. More of a swerve. A sideswipe of covid so intense and disorientating that I don\u2019t actually want to write about it. On the other hand, it won\u2019t leave my head. So I might as well try to chase some of those thoughts out onto the page . . .<\/span><\/p>\n

So I didn\u2019t have an angle. I\u2019m not entirely sure why I didn\u2019t want to write My Experience of Covid. I think I just didn\u2019t want to sound whiny: “listen to how I suffered.” But I\u2019ve read a few of those stories and they don\u2019t feel whiny. They resonate.<\/span><\/p>\n

But they resonate because it happened to me, too\u2014I had a pretty severe brush with covid. But there are many people out there with whom none of this really, viscerally resonates\u2014just 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\u2019t get it.<\/span><\/p>\n

What would make people get it? I was pretty sure what <\/span>wouldn\u2019t<\/span><\/i> work: the purely medical, scientific approach\u2014trotting out a list of symptoms. On the other hand it\u2019s the one thing I haven\u2019t tried when trying to explain my experience to friends (I\u2019m pretty sure none of them got it). So here goes. Symptoms. List of.<\/span><\/p>\n

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.<\/span><\/p>\n

We\u2019ve all had one or two of those things. They\u2019re in our lexicon of experience. On their own they\u2019re not alien. What <\/span>is<\/span><\/i> alien is having them all at once over many weeks. That\u2019s part of what severe covid is: it\u2019s 5 or 10 illnesses at once.<\/span><\/p>\n

Now throw into the mix that this is new and unknown, and that for most people there\u2019s no meaningful treatment or cure; that you might suddenly get worse, and not recover. You\u2019re facing death and there\u2019s nothing anyone can do. That the other part of severe covid.<\/span><\/p>\n

And that is my main abiding experience of covid: that it\u2019s not in a hurry to leave my head.<\/span><\/p>\n

That\u2019s something else that people don\u2019t get. We talk a lot about isolation these days. Being alone for weeks while severely ill is bad enough. But the isolation of <\/span>experience<\/span><\/i> is like suffering the whole thing a second time. Feeling alone because you\u2019ve been through something that most people don\u2019t and can\u2019t <\/span>get<\/span><\/i>. Alone in your head.<\/span><\/p>\n

Maybe that\u2019s why I took photos when I was sick. Yes, that\u2019s right, I took occasional selfies of my sick self. Why? Maybe I thought that they, more than words, might help people to \u201cget it\u201d. Maybe I wanted a record of this thing that seemed so huge in my experience, and that I wanted other people to <\/span>get<\/span><\/i>.<\/span><\/p>\n

I\u2019m 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?<\/span><\/p>\n

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.<\/span><\/p>\n

Am I any closer to an angle? To thinking straight? No, not in a coherent journalistic sense\u2014this isn\u2019t all going to knit together in the last paragraph: I can\u2019t make myself focus on one aspect of all this and write about it. Of course, that\u2019s probably my angle\u2014that that\u2019s what something like this does to you. It knocks all the sense out of you; all the acceptable perspective; all the stories.<\/span><\/p>\n

And it leaves you, of course, with the one story you didn\u2019t want to write. Your Suffering piece. Because you have to try to get it out of your head . . .\u00a0<\/span><\/p>\n

Mid March 2020. Cough, fever. And no ordinary fever. Over 40 degrees for 9 days.\u00a0 A call to NHS 111 on day 4. A doctor will call you back within an hour. (The call never came.)<\/span><\/p>\n

Struggling to breathe, random vomiting, tasting chemicals in water, smelling nothing, loss of appetite, numbness and pain in my legs\u2014pain 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.<\/span><\/p>\n

You can\u2019t 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\u2019t breathe, an ambulance would not be my required vehicle. You can\u2019t have an ambulance. Take paracetamol. Call ended. Hope drifted away.<\/span><\/p>\n

A doctor from the London Ambulance Service called me back an hour later. He asked a few questions and did something that doctors don\u2019t always do: he listened. I could barely talk, just squeezing out a syllable on every third or fourth pant. Which made my point.<\/span><\/p>\n

The doctor told me there were still no ambulances\u2014the crisis had devoured them\u2014but that I should get myself to A&E urgently. I called my ex-wife (we\u2019re still great friends, so you needn\u2019t feel awkward) and she had me there fast.<\/span><\/p>\n

The nurse didn\u2019t 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\u2019t last.<\/span><\/p>\n

That evening a doctor told me that I didn\u2019t have pneumonia and didn\u2019t need intubating, so I could go. There was nothing they could do until I got worse. He added that testing \u201cwasn\u2019t needed\u201d unless I was being admitted overnight.<\/span><\/p>\n

Well, knowing what we know now about false negatives, he might have more accurately said that testing wasn\u2019t useful. But even so.<\/span><\/p>\n

The doctor added, that I should come back when my breathing got worse or I started to cough up blood.<\/span><\/p>\n

My ex-wife answered the call again and drove me home in silent disbelief. There are stairs up to my flat. I don\u2019t 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.<\/span><\/p>\n

My ex-wife stayed until I\u2019d 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\u2019t want to be near me. I tried to understand. But I was crushed.<\/span><\/p>\n

What my ex-wife didn\u2019t 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\u2019t think I\u2019d survive the night.<\/span><\/p>\n

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.<\/span><\/p>\n

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\u2019t lie down because of the broken rib. Put it all together and you have, well . . . I hadn\u2019t known they made suffering that pure.<\/span><\/p>\n

As the doctor had predicted, my breathing got worse, and I coughed up blood every day for 10 days. But I didn\u2019t return to A&E.<\/span><\/p>\n

I took a risk, partly based on the hunch that the blood I was spitting into my hand wasn\u2019t 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\u2019t go back because I couldn\u2019t face being sent home again.<\/span><\/p>\n

After what seemed like an age, my symptoms began to abate. I started to eat more than soup. Over about 3 months I gradually \u201crecovered\u201d.<\/span><\/p>\n

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.\u00a0<\/span><\/p>\n

Four months have passed since my first symptoms. I\u2019m 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\u2019s My Experience of Covid, for what it\u2019s worth.<\/span><\/p>\n

As a writer, you\u2019re primed that your one guiding principle is <\/span>story<\/span><\/i>. Stories are how people make sense of their lives. They need to think there\u2019s a narrative thread; that there <\/span>is<\/span><\/i> any sense.\u00a0<\/span><\/p>\n

It\u2019s a comforting approach, and it makes for coherent copy, but it\u2019s cobblers. Our lives are not stories. They don\u2019t contain stories besides the ones we add and mould to suit our <\/span>angle<\/span><\/i>. 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\u2019t over, either. I still have covid in my head. And I still don\u2019t have an angle. And I wonder how many people really get it. Does this help?<\/span><\/p>\n

Grant Stewart<\/strong>,\u00a0Consumer Health and Multimedia Manager, Knowledge Centre, BMJ.<\/p>\n

Competing interests<\/strong>: None declared.<\/p>\n","protected":false},"excerpt":{"rendered":"

I don\u2019t 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 […]<\/p>\n

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