Long Covid: “I wouldn’t wish this on my worst f**king enemy
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.”
Thank you for this, I thought the fatigue and other symptoms were just in my head, but it turns out there not. And via Long Covid SOS group you link to, I’ve found a local support group. Thank you for such an informative post and linking to the Long Covid group.
So sad this is happening to everyone especially Amanda, it’s so much more is this virus COVID-19 we had hardly ever heard of the word covid before this year although we all knew about the flu but how many of us knew what it was a form of covid, I think that what Amanda and you have done by informing us of how serious this virus is not just as a killer but a debilitating illness which by the way Amanda has described it if she was not as strong as she is would be thinking of giving up on life. This is a story that needs to be published in the wider press and media circles to inform those who are blasé about it and the extent of what can happen to them, Amanda I know not your real name I hope you carry on improving your health and hopefully as you strive to get better you’re exercises will pay off in the long run, I thank you Amanda & Shepway Vox for running your story and informing us I knew covid-long was bad but I didn’t realise it was as bad as you have been. Big Chris
I still have symptoms of COVID after 8 months. Early on I joined a Long Covid Support group on Facebook; being part of that community has helped me through the past months. After a lot of hard by campaigners Long Covid is starting to be recognised but there is still a lot of work to be done as there is still a lack of understanding from the public, employers and some members of the medical profession. For those suffering from this condition I wish you well in your recovery.
“I am low-key terrified I’ll never get better” – this sums up how I’m feeling pretty much every day at the moment. Thank you for bringing long-covid to the table, it needs to be talked about more, and everyone suffering with it needs to be supported.