‘Being alive is utterly exhausting’: How Covid forced people out of work and onto benefits

Kendal was deployed to look after patients dying of coronavirus at the start of the pandemic. Formerly a nurse working with children in palliative care, she joined the frontline as the virus spread, caring for desperately ill people while the NHS was short-staffed and failed to provide proper PPE.

After she caught coronavirus from a patient, Kendal never recovered. She is one of at least two million people in the UK with long Covid, suffering with debilitating symptoms which have forced many out of jobs and needing state support to survive.

“We nearly died doing our jobs. I was willing but I naively thought that when I got sick my employer would look after me. I thought the government would look after me,” Kendal says.

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The government wants people back to work and off disability benefits, pointing to a rising welfare bill and growing numbers of people off work due to long-term sickness in the UK. Around 2.8 million people are of working age but not in employment – an increase of 700,000 since the start of the pandemic.

Keir Starmer has said he believes that people claiming sickness benefits should be expected to look for work. Meanwhile, work and pensions secretary Liz Kendall said “we can’t have a situation where doing a day’s work is in itself seen as stressful”. 

But experts have highlighted delays in NHS treatments, poor mental health particularly among young people in the aftermath of lockdowns, and cuts to essential support services during the austerity years, which have all led to a surge in worklessness. And there is long Covid.

People with long Covid are three times more likely to leave work compared with those who do not have Covid symptoms, according to a study from the University of Birmingham. In 2022, just under a quarter of people with long Covid were out of work – that could now be as many as 500,000 people.

“Long Covid has left many people unable to work, despite wanting to,” says Meagan Levin, policy and public affairs manager at charity Turn2us. She explains these people should be able to claim benefits like universal credit and personal independence payment (PIP) as a safety net.

“But instead, people are forced to navigate a complex, exhausting system just to prove they need support. The fluctuating nature of long Covid isn’t always recognised, leading to unfair assessments, multiple rejections, and unnecessary stress. Recent rhetoric around disability benefits has only deepened anxiety, making people feel like a burden.”

This is the experience of four people with long Covid who have spoken to the Big Issue. Each describes the harrowing impact of illness, their struggle to stay in work, their dependence on benefits, and their fears about what might happen if the government takes that financial support away.

‘I probably have a year of life left’

Kendal lost her memory for nine months after contracting Covid-19 in April 2020 and her neurological behaviour changed. She was asked to resign from the job she had been in for a decade and she took an office role. 

Then her symptoms grew worse. She forgot her parents had died, her partner’s surname and her date of birth. She could no longer write with a pen or type. She developed a sleep disorder called hypersomnia where she could not be woken after 23 hours of sleep.

So she had to leave that job too. Kendal could no longer pay her mortgage and had to sell her house.

She now has poor mobility, severe pain, no appetite and has lost significant weight. She struggles to get downstairs or go to the bathroom. She cannot clean her home.

“I would love to go back to work, but I probably have a year left of life. I have organ failure. If I cut myself, I don’t heal anymore. I have such low immunity.”

Despite her symptoms, Kendal was denied PIP the first time. She appealed the decision, with the help of a DWP worker who helped her fill in the form, and she was awarded the full rate.

PIP is a lifeline – but it covers less than half the cost of her rent, and she is waiting for her local authority to decide if she will get housing support. She fears homelessness, with an average wait time of five and a half years for social housing in England.

Kendal says she has been accused of being a “scrounger” – whereas once people had stood outside their homes clapping for nurses like her who were trying to save people’s lives.

“Empathy is just gone, and people want us to go away because we remind them of Covid,” Kendal says. “People think Covid is over and it’s not. Many are getting infected, and it’s a long-term condition, with so many symptoms. 

“It slowly kills you, which is horrible. It’s not the Covid that killed everybody when it first arrived. But it’s long Covid which nobody knows anything about.”

Kendal describes her life as “miserable” and admits there are times she has felt suicidal. A survey showed that 45% of long Covid patients have contemplated suicide. But Kendal has fight left, and she wants to use her voice to ignite change.

“I want to raise awareness so it wasn’t for nothing all this suffering.”

‘Shame, stress and worry goes into it’

James was a rugby coach for more than two decades and had started working in a sixth form college when the pandemic hit. He and his wife had recently had twins, who are now seven, and were at an exciting stage of life. But he became extremely ill after the Covid-19 vaccine.

The vaccines have saved millions of lives, and studies suggest they can prevent people developing long Covid. But medical professionals have also reported rare instances where people have developed symptoms of long Covid including brain fog, fatigue, muscle weakness and swings in heart pressure, according to Science Adviser.

James felt cold, achy and fatigued and never got better. He could not concentrate and struggled to get up stairs he had used to bound up. He was so tired that he started resting on his desk at work without being conscious of it. He could not remember his students’ names.

“It was like being shut down, physically and mentally,” the 47-year-old from London recalls. But he pushed through until he had a “massive crash”.

James attempted a phased approach to getting back to work but says he “completely broke down”. He cannot read books. He cannot watch rugby because he finds himself drifting off and staring at the wall. 

“I’ve lost so many of the things that used to make me me,” he says. “In a room with friends, I can’t catch the conversation. I’ve got two wonderful little boys – it was my dream for all these years to kick a ball around with them. I can last a few minutes, and then I’m sitting down. And they say: ‘Daddy, why are you sitting down?’”

James explains he has had to take multiple naps throughout the day in order to speak to Big Issue, and he has ensured someone is home to look after his children.

“The things I was good at were being with students and engaging with people. I can’t do that anymore. What the heck can I do if I can’t do that?”

He applied for universal credit and PIP with the support of his wife. “I was someone who never even considered I’d have to do that, so there’s an amount of shame, stress and worry that goes into it. I didn’t want to research it, because a part of my brain was telling me I was going to get better. I had to get counselling to get my head around that things had changed.”

James says he was in tears on the phone for the majority of his PIP assessment, and he did not expect to get the support, because he had read how difficult it can be to get disability benefits. Just over half of people get it the first time, but he was awarded PIP.

He then applied for universal credit, which he describes as a “dehumanising process”, “dragging yourself into the Jobcentre” and being “passed from desk to desk”. 

“It’s such a difficult experience, and these are people who are the most vulnerable in society. I’m a calm, level-headed person. I’ve been incredibly lucky in my life, and I feel like I know how to deal with stressful situations. But I went in there and it took every ounce of everything I had to get through it. I understand why people get angry or can’t cope.”

A person can get statutory sick pay of £116.75 a week, but only for up to 28 weeks of illness. But long Covid can last months and has lasted years for many people. 

As it is still a new illness, there is little understanding as to whether people will get better after long Covid, and there is no known cure or proven treatment. Long Covid clinics intended to support people with rehabilitation are being shut across the country.

A government spokesperson said: “Long Covid can have a debilitating impact on people’s physical and mental health and we are committed to ensuring there are quality services for people suffering with it in every part of the country.

“No single treatment currently exists for long COVID, which is why we have funded research into the condition, including clinical trials to test and compare different treatments.”

Some people have made a full recovery from long Covid, but others face worsening health. Research is ongoing to understand the illness, but there are fears funding will dwindle as interest wanes, with a collective amnesia around the pandemic as people seek to move on. Meanwhile, lives have been irrevocably changed.

‘I’m just too ill, and that’s been proven’

Darren Parkinson had been a community learning nurse for the NHS, supporting disabled children and their families, for 20 years before he got Covid in September 2021. It felt like bad flu, although nothing he had not experienced before. And then he never recovered.

He was off work for around a year before he managed to get back to it – and then in September 2023, his health deteriorated. He looked at working from home, fewer hours, alternative jobs, but he was unable to do any of it.

“Just being alive is just utterly exhausting. From the moment I wake up to the moment that I go to bed, I am constantly exhausted. It’s like the worst hangover you have ever had, coupled with the exhaustion you’d feel from running a marathon.”

Darren, 49, lost his job in December, and he had to resign from as a Green Party town councillor in January. But he adds that the “biggest and most upsetting part of all this” is that he feels he has lost his ability to be a dad to his children, who are 13 and 14.

“At the moment, I can’t see how I will be able to work, unless there’s some treatment around the corner, and there isn’t treatment for long Covid. The government absolutely must invest in research to get treatments.

“The scale of investment that the government’s put in so far into research is nowhere near the scale needed to get the research carried out, to try to properly understand this disease, and then get some treatments.”

Darren is claiming PIP but he needed help to apply. He says there is a lack of understanding of fatigue in assessing people for disability benefits, and he had to push to be given a chance to rest halfway through his assessment.

As the government threatens to slash welfare, Darren says he is “greatly concerned”. He wants ministers to work with disabled people to support them back to work – but he believes that will only happen with proper treatment.

“I’m just too ill, and that’s been proven. I’ve been trying for the last year to get back into my job, and I was dismissed on ill health grounds,” Darren says.

“They always talk of helping people with Jobcentres, trying to get people back into working. There’s a place for that. But they have to recognise that there are people who are just too ill to work and need support from the state. Sadly, I’m one of those.”

The rate of long Covid among the most deprived fifth of the UK population (3.2%) is more than twice as high as that in the least deprived fifth (1.5%), research shows. These are people who may have already been claiming some form of benefit. Women are also more likely than men to be affected.

‘I want to have my life back’

Lisa, a 49-year-old from the West Midlands, has suffered from long Covid since she was hospitalised with the virus in 2020. She struggles with fatigue, memory issues, brain fog, joint pain, muscle weakness and dizzy spells.

She previously worked as a learning assistant – a role she says she thrived in. After contracting Covid, she had to take almost a year off. Through rehabilitation at a long Covid clinic, she was able to return part-time with specialist equipment to manage her pain.

Then Lisa contracted pneumonia in 2022 which meant she was hospitalised. Long Covid had weakened her lungs and immune system, and her symptoms returned and worse. She has never recovered and has not been able to return to work. 

She had to apply for benefits for the first time in her life, but she claims it took three months before she was granted universal credit. “There was a lot of anxiety for that period, because at that point, I didn’t know if we would get help or not. And we could lose our home. If I’m not paying that rent, I’m on the street.”

She was later told she may be eligible for personal PIP, and she was awarded it on the first attempt. It meant she could afford a mobility scooter and was given a mobility car.

“I’m so grateful for what I’m getting,” she says. “But I’m really anxious about changes to PIP. Everyone I speak to is anxious because we don’t know if we’re going to keep it.

“They keep harping on about disabled people: ‘We need to get them back to work. We need to cut the benefits.’ However, you’re closing long Covid clinics all over the UK. You’re not ensuring that the NHS is educating professionals to treat us. If we’re not getting treated, how are we going to get off benefits? How are we going to get back to work?”

The government is set to publish a green paper with its plans for disability benefit reforms in spring, which will consider how to tackle barriers to employment, with initial announcements focused on people with mental health conditions.

A spokesperson said the government “will be bringing forward proposals for reforming the health and disability benefits system within weeks, so it provides people with the support they need in a way that’s fairer on the taxpayer”.

Long Covid was not mentioned in the Get Britain Working white paper published last year.

The Mental Health Foundation carried out a project in Wales which highlighted “significant challenges” faced by people with long Covid returning to work.

Alexa Knight, its director, says that “while the new government is beginning to turn its attention to younger people whose mental health has caused them to have fallen out of the workforce, we’re still waiting to see the kind of comprehensive response that is needed after a generation-altering pandemic”.

People with long Covid and other health conditions say they have been made to feel ashamed for giving up work and claiming state support. Social security is intended to protect people if life does not go to plan – to support the most vulnerable people in society. Instead, many of these people say they are living in fear that their benefits could be taken away.

Lisa adds: “There seems to be an uprising in society, where people on benefits and particularly disability benefits are getting slated. It is really upsetting because I want to have my life back. I think society is changing in a negative way with its attitudes towards people with disabilities, and that worries me. I feel like people see me as a burden.”

Long Covid Support provides information, advice and community to people suffering with long Covid.Turn2Ushas a benefits calculators to help you find out what financial support you might be entitled to claim.Citizens Advice offers advice and can refer you to support which may help.

If you are struggling with your mental health, call Samaritans for free on 116 123, email jo@samaritans.org or visit samaritans.org for useful resources and advice on coping.

Mind’s welfare benefits helpline supports anyone with mental health problems who is navigating the benefits and welfare system. Call them on 0300 222 5782. Mind also has a general helpline if you are struggling with your mental health, which you can reach on 0300 123 3393.

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