Until March this year, Jane* was an active and healthy 39-year-old who cycled everywhere and had a busy work and social life. Now walking for half a mile makes her throat and lungs ache for days. She doesn’t see friends and family because if she spends her energy on those interactions, she won’t have any left to work the next day. Some weekends she spends entirely in bed.
“I wouldn’t wish this on my worst fucking enemy.”
Jane and her husband both got coronavirus in March within two weeks of each other and have been suffering the effects ever since. Doing too much leaves them exhausted, breathless for hours, and with aching lungs for days. “I am low-key terrified I’ll never get better,” she tells me.
They’re among the estimated 60,000 people in the UK with Long-Covid, where symptoms last longer than 12 weeks. NHS England have said that long-lasting symptoms include “breathing difficulties, enduring tiredness, reduced muscle function, impaired ability to perform vital everyday tasks, and mental health problems such as post-traumatic stress disorder, anxiety, and depression”. Jane describes it as being “bone numbingly tired, like you haven’t slept in six weeks, and none of your muscles work properly”.
But despite the debilitating effects of the illness, there’s little about them in the media coverage of coronavirus. At the start of the pandemic, when there was nothing substantial about Long-Covid, Jane “felt so invisible”.
It’s why she wants to share her story. Jane says she normally doesn’t like to make a fuss about illness, but says that it’s “really important that people understand this”.
“It’s terrifying how blasé we are”.
“People aren’t aware that this is an option. [They think that] either it’ll kill us or I’ll cough three times and then I’ll be fine.” In fact, eight and a half months later she’s still carefully rationing her time, knowing that to do one simple activity she has to sacrifice another.
“Other people don’t seem to care about getting sick or making other people sick.”
What we know about Long-Covid
One of the most frustrating – and scary – things about Long-Covid is that it’s such an unknown. “Nobody knows how to treat this,” Jane tells me.
But research is increasingly being dedicated to this, including a study on patients discharged from Southmead Hospital in August which found that three-quarters still had symptoms three months later. Like Jane, they reported breathlessness, fatigue and muscle pain, and had difficulty doing daily tasks.
It wasn’t until September that Long-Covid was officially recognised by the government but Long-Covid now exists as a diagnosis and has been categorised into four distinct syndromes: post intensive care syndrome, post viral fatigue syndrome, permanent organ damage and long-term COVID syndrome.
NICE has developed guidance on managing the long-term effects of coronavirus. The NHS is set to open 40 Long–Covid clinics across the country, eight in the south west, and the Your Covid Recovery website offers support to people with long-term symptoms. We now know that the people most susceptible to it are women, older people, and people who have more symptoms in the first week of illness.
More recently, two separate studies have found damage to organs months after patients first contracted coronavirus. Data from 200 young and previously healthy people found impairment to an organ in 78% of patients four months after originally getting coronavirus. One in four of the participants had two or more organs affected.
Lobbying the government
Long Covid SOS, a volunteer campaign group set up to lobby the government into providing more support and recognition for Long-Covid sufferers, has been putting pressure on the government to commission research into the condition, raise awareness among practitioners and employers so sufferers are not discriminated against, and recognise the economic impact on sufferers.
Fran Simpson, a Long-Covid sufferer since she contracted the virus in March, is a founding member of the group. She couldn’t find any reference to Long-Covid at first. “It felt like we didn’t exist – medical gaslighting, being told it was just anxiety. No treatment or diagnosis.” She says that having the condition recognised is “validating”.
The campaign group hopes that the pressure they’re putting on the government will lead to more research into what it is, how it works and how we can treat it, with sufferers having an opportunity to be seen at a clinic and get the financial support needed when unable to work. Many sufferers, Jane included, have to use their annual leave or take unpaid days off when they can’t work because of it.
Getting better slowly
Jane’s recovery has been painfully slow. After two weeks of dry coughing, sore lungs and shortness of breath, exhaustion, fever symptoms, bad brain fog, a sore throat, streaming eyes, no sense of smell and insomnia, she felt a little better and thought she just had to wait it out.
“At this point, I thought I was having post-viral fatigue and the tail end of bad flu, and would be fine after a week or so of taking it easy.”
Instead, during the first two months after contracting, two attempts at light exercise – a 15 minute walk, left her with whited out vision and feeling like she might pass out. She was too exhausted to move the rest of that day and the next day. Her brain was “like cottage cheese” until May, and then she woke up one day and could think clearly again.
Jane’s fitness note ran out in May and she didn’t ask to extend it, instead taking a day’s leave each week to make up for the lost hours because she was too weak to work full days. Now, at eight-and-a-half months, she can cycle on flat ground for a mile and a half or walk for half a mile.
“But my lungs and throat will hurt for days afterwards,” she says, adding that she “will feel very wobbly for the rest of the day and need total rest for an hour or two immediately afterwards.” She gets exhausted easily and has to ration her time, prioritising work, because she doesn’t have enough energy for everything. “I used to be fit before this,” Jane says wonderingly.
She has started to see some improvement in her energy levels recently, but it’s slow. “The biggest difference now compared to three to four months in is that I can push myself harder with a quicker recovery time. But it still costs.”
She’s wary of how long she talks in a day, it can leave her wheezing for hours later and her lungs aching for days.
“I don’t want to live out the rest of my life having to ration out my energy expenditure like this.”
*Name has been changed