Up until February of this year, Amanda* was an active and healthy 35-year-old who cycled everywhere and had a busy work and social life. Now the simple act of walking to the shops and back (about half a mile) makes her throat and lungs ache for days. She doesn’t socialise with friends and family because if he does, she simply won’t have any left to work the next day. Some weekends are now spent entirely in bed.
“I wouldn’t wish this on my worst fucking enemy.”
Amanda and her husband both caught coronavirus in February 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,” Amanda tells our public face during a recent Zoom meeting.
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”. Amanda 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, she and her husband both “felt so invisible”.
It’s why they want to share their story. Neither of them normally like to make a fuss about illness, but both of them say 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 a dozen times and then I’ll be fine.” In fact, ten months later Amanda and her husband still carefully ration their time, knowing that to do one simple activity they have to sacrifice another.
“Other people don’t seem to care about getting sick or making other people sick.”
One of the most frustrating – and scary – things about Long-Covid is that it’s such an unknown. “Nobody knows how to treat this,” they say.
More than two-thirds of patients hospitalised due to coronavirus continue to suffer from debilitating symptoms more than seven weeks after being discharged, a new study suggests.
Researchers found that 54 days after discharge, 69% of patients were still experiencing fatigue, and 53% were suffering from persistent breathlessness.
They also found that 34% still had a cough and 15% reported depression.
“Long Covid” is a real phenomenon and that further research is needed to understand how the symptoms of Covid-19 can be treated in the long-term.
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, six in the south east, 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.
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.
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, Amanda included, have to use their annual leave or take unpaid days off when they can’t work because of it.
Amanda’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.
Amanda’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 ten 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,” Amanda says while staring out of the window to a grey overcast sky.
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