Getting better from this chronic disease is much easier for those with a safety net

In early March I suddenly fell sick: a fever, breathlessness and muscle aches. I followed the advice at the time, which was to stay at home and call 111 if needed. It wasn’t possible to get tested, but I rested and tried not to panic about feeling unable to breathe. I started getting better, but then I stopped getting better and began feeling worse. Within a few weeks I was mentally and physically frayed, unable to do any more than sit up in bed.

While most people recover from Covid-19 in the expected two-week period, there are many for whom the ill health brought on by the virus persists. According to the Covid Symptom Study, which was carried out by American and British doctors and scientists, of those who develop Covid, about one in seven will be ill for at least four weeks, one in 20 for eight weeks, and a further 2.2% of cases will persist for 12 weeks or more.

When “long Covid” is discussed, including in first-person accounts, it is often as a kind of body horror: the quantity, variety and oddness of its symptoms, the damage it does to the young and healthy. This was the kind of thing people asked me about too. And even though I wasn’t as spectacularly healthy before as many of my fellow sufferers (who include marathon runners, ballet dancers and healthcare workers), the decline in my health – from pretty much fine to seriously unwell – was stark.

The physical effects of long Covid were scary: at my lowest point I wasn’t able to stand up for the time it took for the kettle to boil, and a brief spot of vacuuming sent me straight back to bed. I couldn’t even carry cups of tea. The cognitive effects were nightmarish: I wasn’t able to recall basic words, and every thought felt out of reach.

Suddenly becoming chronically ill is terrifying. The things you once thought certain disintegrate. You worry if and how you’ll be able to work; if your loved ones will stick around to help; if your employer will be supportive. This worry can get in the way of a particularly precious and falsely scarce resource: time for rest.

When people ask me about long Covid, all I want to talk about is rest. We don’t yet know everything about this disease, but if its symptoms overlap with post-viral illnesses and with chronic fatigue syndrome (CFS/ME), which they appear to, we can assume that rest will play a significant role in its treatment.

The ME association stresses the importance of rest, of pacing yourself and returning flexibly to everyday activities, rather than pushing yourself to return to previous activity levels. But rather than giving people time rest and recuperate, the dominant medical treatments for illnesses such as chronic fatigue syndrome and ME are graded exercise therapy and cognitive behavioural therapy to challenge patients’ allegedly irrational beliefs about their health.

Rest is not something that everyone who becomes sick can afford. I was only able to rest because of the generous sick pay that my PhD scholarship offered – and, crucially, because I had a partner who was willing and able to do all the cleaning and cooking.

Those suffering with long Covid, as with other energy limiting impairments, will not have equal access to rest. First of all, the minimum level of statutory sick pay (£95.85 per week, for up to 28 weeks) is insufficient for the 26% of UK employees who rely on it. They either face not being able to cover basic costs or an early, dangerous return to work. And those on insecure and precarious contracts have even less bargaining power, making it harder to ask for paid time off. There’s a gendered aspect in all of this, too: women are more likely to have caring responsibilities, and therefore less control over their time.

The question of who gets to rest – which means who can afford to take time off, whose time is interrupted and interruptible, whose is their own – is a political one. Taking time off depends upon having a safety net; a sympathetic employer, people who can care for you or savings to tide you over.

In Britain, many of the safety nets that would have allowed people to rest have been dismantled. The ideology of austerity that was based on a false binary of shirkers and strivers, of “alarm clock Britain” and Benefits Street, entrenched an assumption that remains common today: that those out of work and on disability benefits are malingering. This legitimised the reduction of financial support for those who needed it, with capability assessments for benefits such as personal independence payment and employment support allowance often found to have failed sick and disabled people.

In my case, I only began to feel better once I had committed myself to rest. I had to train myself to rest, to accept how thick time feels when you’ve forbidden yourself from doing very much at all. Fatigue made everyday activities nearly impossible. To return to a semblance of normality, I had to become a household Taylorist, measuring the precise gestures and the effort each movement required to make tasks like going to the toilet or making tea or washing my hair safe and less exhausting.

In the early days of these new times, it was said that because everyone could get sick, there was some sort of egalitarian potential in the pandemic, however gruesome its effects. This was and has always been nonsense. Anyone can become sick, but inequalities of race, of class, of disability, gender and region means their likelihood of becoming sick and their prognoses are different. Risk is not shared equally, and the question of who gets time to rest and recover from long Covid is not a natural phenomenon, but a matter of politics.

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