As COVID-19 raged around the world five years ago, London community nurse Beverly Summers found herself on the frontline of the pandemic, caring for patients in their homes as hospitals rapidly ran out of beds.
Passionate about her job, she did back-to-back shifts for eight weeks, but then caught the virus herself.
She has not worked since.
Summers is among an estimated 2 million people in Britain – and possibly 230 million worldwide – living with long COVID. While some have mild symptoms and recover, others have had to quit work or cut their hours due to a deluge of debilitating conditions that have ravaged their health, lives and finances.
"I doubt I'll ever return to work, and that's devastating because I loved my job," Summers told the Thomson Reuters Foundation. "I'm effectively homeless and in a totally precarious position financially."
Economists say long COVID is costing countries billions of dollars a year in lost productivity and increased health and social welfare spending.
"Governments don't appear to understand how serious this is," said Manuel Gomes, a health economist at University College London (UCL). "They've completely underestimated the impact long COVID has on people's ability to work."
One analysis of eight countries by the Economist media group suggested long COVID could have cut their GDP by between 0.5% and 2.3% last year.
Academics have described it as "a mass disabling event", but a dearth of robust data makes it hard to gauge the economic impact and estimates vary wildly.
Compounding the problem is the lack of an agreed global definition of long COVID.
Patients have reported more than 200 symptoms affecting every part of the body. They include cognitive dysfunction, debilitating fatigue, breathlessness, heart problems and joint pain. The causes are unknown and there is no cure.
NO HOME, NO SAVINGS
Long COVID remains hidden, partly because those worst impacted are so exhausted they cannot advocate for their needs. Unable to work or socialize, many are housebound and isolated.
"I've gone from being someone who never wanted to retire and had a full-on social life to living as a virtual recluse," said Summers, one of a dozen people with long COVID interviewed by the Thomson Reuters Foundation.
Self-employed, Summers could not claim sickness leave and quickly exhausted her savings, shelling out thousands of pounds on tests and treatments.
A year after becoming sick in her mid-50s, she took the painful decision to rent out her home so she could generate a small income. Her medication alone costs about 200 pounds ($246) a month.
Summers has moved 16 times since becoming ill, compromising her recovery. She doubts she will ever live in her own home again, which is a source of grief.
At her sickest, Summers was in "unimaginable pain". Her head and lungs felt like they were on fire and one of her vertebrae shattered from inflammation in her chest.
She has had to learn to walk again and has crushing fatigue, respiratory and cardiac issues, joint pain and brain fog - a condition the American actor Matt McGorry recently described as a euphemism for brain damage when he spoke about his own long COVID.
Gregarious by nature, Summers used to love trips abroad, meals with friends, dancing and pilates. All that is gone.
"I live very frugally," she said. "My life is unrecognizable."
EXPERTISE LOST
Official estimates in Britain indicated 3.3% of the population was affected in early 2024 - with one in five people with long COVID reporting a severe impact on their daily life. It affects women more than men.
Health economists said it was astonishing so little attention was being paid to a condition that had removed so many people from the workforce.
Unlike other chronic diseases, long COVID often takes people out of work at the peak of their productivity.
"I know so many people in their 40s who aren't working because of long COVID. A lot of expertise will ultimately go to waste," said Anna, a doctor who was forced to quit work at 41.
Anna, who asked to use a pseudonym due to ongoing negotiations with her employer, estimated she would lose 2.5 million pounds in salary over her lifetime, and predicted her pension would be less than a third of what it would have been if she had been able to work until retirement.
The mother-of-two has spent 20,000 pounds on medication, private consultations, tests and treatments including oxygen therapy and physiotherapy.
Further expenses include a stair lift, wheelchair and wheelchair accessible van. Her mother-in-law helps with childcare, the school run, laundry and cooking.
One recent study suggested the unpaid care provided by family and friends could be worth 4.8 billion pounds a year.
HEALTH COSTS
Long COVID not only impacts the economy through lost work hours, but also because of the greater burden on health services.
Research is emerging that suggests the cost per patient could be comparable to some common chronic conditions, but experts said support for long COVID patients appeared to be fading.
"Long COVID is unlikely to go away any time soon," UCL's Gomes said. "Governments must prioritize funding for prevention, treatment and research to reduce the massive economic burden."
Most people interviewed said they had been forced to pay for private consultations, tests and therapies because of a lack of expertise in the National Health Service.
Many reported being disbelieved and their symptoms treated as psychosomatic.
"Some people don't seek medical help because there's so much gaslighting," said Pooja Mistry, 44, a doctor who has severe heart problems and damage to multiple organ systems.
"It's an invisible illness. It's decimated my whole body, but even as a doctor I've sometimes been made to feel like an imposter."
The mother-of-two, who used to be the main breadwinner in the family, is often bed-ridden and relies on a wheelchair.
Mistry described long COVID as "a living nightmare". But like many others, she has struggled to navigate Britain's complex social welfare system.
Ironically, she said she was not entitled to a key sickness benefit as she missed the application deadline because she was too ill.
"I think a lot of people are falling through the cracks," Mistry said.
Ondine Sherwood, co-founder of patient advocacy group Long Covid SOS, said many people were turned down for benefits and had to go to tribunals to fight for them.
A government spokesperson said benefits were provided to those who met the criteria, but did not address any of the concerns raised by people with long COVID.
Sherwood, who has given evidence to Britain's ongoing COVID inquiry, called for greater investment in long COVID research, improved multidisciplinary specialist healthcare and better access to financial support.
With Britain no longer testing for COVID, she also warned that many more people will develop long COVID symptoms, but may not get diagnosed.
"Long COVID is significantly impacting the economy - and we don't even know the full extent of it," Sherwood said.
"But the government is still burying its head in the sand."
