Few people in the UK feel reassured by the news that the Omicron variant causes only mild illness. Many patients say they only had a mild initial infection, but it went on to topple their health, social lives, and financial stability. More than a million COVID long-haulers in the UK and that number is expected to keep rising. Here are just a few of their stories.

The Yoga Teacher-in-Training

Jasmine Hayer, 32, was training to be a yoga teacher in London when she got COVID-19 last March. She recovered from her initial illness but was soon experiencing fatigue, heart pain and palpitations, tightness in her chest, and breathlessness. She moved back in with her parents when she found she couldn’t even make her bed without growing short of breath.

For nine months, doctors attributed her symptoms to anxiety, but Hayer knew they were wrong. She developed her own symptom tracker and learned that her main triggers were bending over, walking, and talking, with a delayed impact on her lungs.

Things began looking up when she began treatment at a long-COVID clinic at the Royal Brompton Hospital. There, doctors found multiple health issues:

• A 53% oxygen level in her lungs, the same as that of a lung disease patient
• Post-COVID heart inflammation
• Small blood clots in her lungs, only visible with a specialized ventilation-perfusion scan

Blood-thinning medication has gotten rid of the clots, and an anti-inflammatory drug called colchicine has helped her, but she still has abnormal blood and oxygen flow to her lungs. “Now I can walk slowly for five minutes once a week if I’m lucky, but I get chest pain afterwards,” she says. “I have to choose between using my voice and moving my body. I can’t do both in a day.”

Currently on sick pay, Hayer is eager to work again but says she’ll have to change course and reinvent herself. “My whole life has been pulled out from underneath me like so many others with long COVID. I can’t even lift my left arm up, let alone be a yoga teacher, which is heartbreaking.”

Since starting a blog about her journey, Hayer has received hundreds of communications from other long-haulers desperate for both answers and relief. She does what she can to help them as she seeks her own solutions.

“This illness is so baffling, and no one really knows how to treat it,” she says. “I honestly don’t know if I will ever get back to full health, but I’ll never stop trying.”

The Would-Be Music Label Manager

Emily Miller, 21, was studying for a music business degree when she got COVID last October.

After recovering from a mild illness from the initial infection, Miller started experiencing migraines, tinnitus, numbness, breathlessness, dizziness, nose bleeds, chest pain, and nausea. 

Her GP told her she had anxiety-related irritable bowel syndrome and suggested she “go home and sort [herself] out.” A blood test, however, showed she had a low white blood cell count, and she was referred to a long-COVID clinic to help her with fatigue management. 

Miller used to be an avid walker and enjoyed going out, often attending the theater. Now she only leaves the house for medical appointments and lessons. “By the end of my classes, I feel drunk and can’t remember what has been said. I don’t see my friends or have a social life,” she says. “My life has completely changed, and so has my career trajectory.”

Miller remains on pain medication and still suffers from fatigue, muscle spasms, and gastrointestinal problems. In addition to her health, she worries about paying her rent every month. “I applied for a disabled students’ allowance,” she says, “but they do not recognize long COVID as a disability.” Finally, she set up a fundraising page online. “I hate asking other people to support me,” she adds, “but I felt like I was running out of options.” 

The Former War Photographer 

Antony Loveless, 54, and his partner Claire Hooper, 52, were infected with COVID-19 while at their jobs (a lead investigator and a nurse, respectively). They have both since lost those positions and have spent most of 2021 in bed with debilitating fatigue and crippling pain, unable to look for work. 

Once active and fit, Loveless has been diagnosed with a loss of white blood cells and POTS, which hinders his ability to regulate blood pressure. He’s lost 56 lbs, walks with a cane, and sets timers to remind himself to eat, only to forget why he went to the kitchen. Hooper has lost 84 pounds and has been diagnosed with hypertension and diabetes. They both went to a long-COVID clinic, but were told they were too sick to start rehabilitation and were discharged. 

Though they recently qualified for benefits, they had already spent £10,000 of their savings to keep up with their mortgage and household bills. “We had an enjoyable middle-class lifestyle,” says Loveless. Now they’re living “on the bare minimum.” Financial struggles are only part of the larger picture, however. 

Loveless says that several months ago, their quality of life had deteriorated to a point where he and Hooper considered suicide. “We got to a point where we couldn’t go on with the pain…We had run out of money and options and were lying in bed, not even able to follow a plot on TV.”

Fortunately, they got past that crisis, but Loveless says they still feel as though the government has forgotten people like them. He’s frustrated that statistics are only collected on how many patients die and how many don’t. “The government never talks about long COVID,” he says, “you either die or recover, but what about us?”

What’s Next for Helping Long-Haulers?

Though it may feel that way, long-COVID patients are not completely invisible. Cardiologist Dr. Amitava Banerjee, a professor at University College London, is currently leading the two-year STIMULATE-ICP study, which will recruit 4,500 patients from six long-COVID clinics. Scientists will test existing drugs for effectiveness, including antihistamines such as loratadine, anti-clotting medications like rivaroxaban, and the anti-inflammatory drug colchicine.

Banerjee agrees with Loveless about the government’s relative silence concerning the plight of long-haulers. “I would love to see more consideration, debate, and acknowledgment of long COVID from our policy-makers,” he says. “If you only measure deaths, you miss out on the impact on peoples’ lives. We should know better than this.”

*Jones, C. (2021, Dec. 26). Long COVID: ‘I have to choose between walking and talking’. BBC News. https://www.bbc.com/news/uk-england-beds-bucks-herts-59584146