I used to be Ms Covid Casual. But with a sick sister, thats changed – The Guardian

Five months ago, I wrote about my sister, a junior doctor at a large hospital, and my fears for her as she worked on what is frequently described as the frontline of the Covid-19 crisis, as if she were a soldier at war, as opposed to someone who just wanted to make people feel better.

Well, grab me a turban and call me Mystic Meg, because youll never guess what happened next. She got coronavirus. Pretty badly, actually, since you ask, around the end of March. While death is obviously the worst possible outcome of Covid-19, there are, it is increasingly clear, other bad ones. My sister is now suffering from long-term Covid, known to doctors like her as post-acute Covid-19. According to the British Medical Journal, about 10% of people who are infected still feel the effects more than three weeks later. In my sisters case, its been six months. When she first got sick and tried to maintain that always-encouraged attitude positivity she would think ahead to the autumn, being back at work in the hospital, going for long cycle rides. Instead, she cant walk to the end of her road without becoming breathless. It doesnt improve. It just is.

Last week, the BMJ published a letter from a group of doctors, all with post-acute Covid-19. I talked to a few who had signed it, and they spoke about their frustration that so much of the focus has been on the numbers of positive tests, the hospital admissions and deaths, while the aftermath of the illness has been relatively overlooked.

Partly this is because its hard to track: many who suffer from it were never admitted to hospital; or they became ill before testing was available; or they got a false negative. But its also because no one knows what the hell to do. Its like HIV or syphilis, in that it presents one way but can manifest in many, one doctor told me. As well as the lungs, it can damage the heart, the kidneys, the nervous system, the brain. Another doctor spoke of his fear that Covid-19 will fall into that basket of hard-to-treat conditions, like ME and chronic fatigue syndrome. Others described long waits to be seen at a post-Covid clinic, only to be told to rest and wait because well, what else can anyone suggest? It is known that certain factors exacerbate risk of death from Covid age, underlying health conditions, ethnicity but long-term Covid, as far as we know, follows no such pattern. Anyone can get it, and that, the doctors all said, needs to be clearer in the public messaging.

I have to admit, I was initially a little blithe about the virus. Oh sure, I wore my mask Im not Ian Brown but all my efforts felt like they were for someone else: my parents or elderly friends. If I got it, I quietly thought, would it really be so bad? Two weeks in bed without seeing anyone actually sounded a tiny bit awesome? Lord knows I could do with the rest. Since then, Ive had to mentally reframe the risk factors and the way the future could play out. Will I still be able to walk my kids to school in two months time? Will they even be at school?

The whole of the past four years have been an arduous exercise in staying upright on constantly shifting sands. The Brexit referendum and the ensuing chaos, followed by the election of President Trump, changed the way many of us in the UK or US or (hi!) both feel about the places we live. No one can predict the outcome of a US election with any certainty, but previously, we have always known that the loser will accept his or her loss. With Trump, that is very much not the case. One friend recently told me she turned down a work trip to the US this November because she feared post-election national chaos, and this does not feel alarmist even to me, formerly Ms Covid Casual.

The cheerful euphemism the new normal is grating and a lie: there is no normal when seemingly every day brings big changes. Not being able to envisage the future is both exhausting and disorienting. I briefly crazily considered taking my kids somewhere for October half-term, then the localised lockdowns began. A friend invited a few of us around for dinner, then the rule of six kicked in. Will we see our families for Christmas? Our friends for new year? Who knows? The rules scrabble to keep pace with the viruss progress, and not even doctors can predict that. Anyone puzzling over why rates of anxiety and insomnia are soaring is welcome to ask me at 4.30am, my new-normal wake-up time.

Meanwhile, my sister is still sick, still trying to stay positive. But, as she knows better than most, there are no guarantees that she will ever be back to the way she was. Were all realising that, I think, relinquishing the expectations that well entirely return to our old ways, which we had previously just thought of as life. It is hard, that letting go in the dark. The weeks slip past, and we keep optimistically making plans and then pragmatically breaking them, undoing the stitches as fast as we sew them, trying to go forward, but somehow standing still .

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I used to be Ms Covid Casual. But with a sick sister, thats changed - The Guardian