I'm in My Twenties and Long COVID Has Destroyed Me

This article was originally published on VICE Romania.

As anyone who’s had it will tell you, “Long COVID” can be worse than the initial bout of coronavirus itself. Clinically diagnosed as “post-COVID-19 syndrome” if it persists for more than three months after infection, symptoms vary from the seemingly small things – such as an ongoing loss of smell and taste – to nerve and organ damage. They can also occur in people who only suffered a mild case of the virus.

Bogdan Mincu, a pneumologist from Cluj, Romania, said he has managed dozens of cases of long COVID in the past year, and has noticed younger patients finding it harder to reckon with ongoing health issues: “Young people, as a rule, are not used to being left with symptoms after a mild illness.”

We spoke to young Romanians about how long COVID has affected their lives. 

When Robert, 30, got COVID in January of 2020, his taste and smell went first. Then came the vomiting – every morning for nine days – body aches and fever. On the worst days, he only got out of bed to go to the toilet – but needed assistance doing just that. 

On top of all of this was an extreme case of insomnia: Robert was sleeping a maximum of three hours a night. A negative test confirmed the virus had left his body as of the 21st of January, but the insomnia has remained. He’s tried taking melatonin pills, but they’ve not done the job. His smell and taste aren’t back, either.

Mincu said insomnia after COVID could potentially indicate post-traumatic stress disorder (PTSD) – identified in both COVID survivors and medical staff in the UK during the pandemic. 

“Before I got sick, I didn't really believe in the virus,” admitted Robert. “I didn’t always follow the rules, and I sometimes just wore my mask on my chin, because I hadn’t known anyone who had got the virus. I'm 30 years old and I’ve never felt so sick in my life.”

Two weeks after recovering from COVID in 2020, Alexandra, 26, found herself with chronic, debilitating headaches. It became difficult for her to do anything, let alone work. The headaches continued for about a month, and still return whenever she doesn’t get enough sleep.

"I’m young, so I was shocked that I felt so bad. I’d never had migraines before in my life. I was also tired all the time. The dizziness and the fatigue also persisted for about a month. It’s hard to figure out what’s causing it after a while. Is it long COVID? Is it burnout?” she said.

It became harder and harder for Alexandra to explain to her boss why she wasn’t back to full capacity. Her colleagues avoided the subject, and she didn’t know how to communicate that she wasn’t better yet.

“It was hard for me to concentrate. I was looking at tasks and they seemed impossible, although it was actually super easy, routine stuff,” she said. “After I recovered, I finished them in ten minutes. My mind was affected for a month-and-a-half.”

Eventually, Alexandra underwent tests to see if she’d been left with neurological issues. Brain scans didn’t show anything, nor did blood tests or CT scans of her lungs. Specialists concluded that she just needed to rest as much as possible. She did, and reports feeling much better now.

Dragoș, 32, suffered a mild-to-moderate case of COVID, and didn’t need to go to hospital. While infected, he was even able to take care of his girlfriend, who also contracted the virus. Everything seemed fine until the pair came out of quarantine and underwent blood analysis. Dragoș found out he had severe liver problems, with values twice as high as the average, even though he doesn't smoke, rarely drinks and doesn’t have a history of liver disease. His girlfriend, on the other hand, had no problems, despite suffering a more serious bout of COVID.

Nevertheless, Dragoș went back to work. He began to feel more and more tired, especially after eating. He had more tests on his liver, with worse results: his values were three times higher than the average. Alarmed, he booked himself in for X-rays, ultrasounds and visits to a specialist, who diagnosed him with chronic hepatitis. He started suffering liver pain so severe it prevented him from sleeping, and had to take medical leave from work again.

This was all despite the virus having left his body. His doctor told him the adverse effects could be related to a few things, including the antibiotic both he and his girlfriend were prescribed while they were infected. Azithromycin is used to treat chest and sinus infections, but its efficacy in treating COVID has been questioned by recent medical studies. His doctor suggested it could also be related to another, unidentified infection in the body, or it could simply be a yet-to-be-confirmed side effect of COVID.

Doctor Mincu said liver damage as a result of COVID – or in fact damage to any organ but the lungs – was difficult to explain: “This is not at all common for the viruses we were used to. Probably the most similar phenomenon occurs in patients who have survived Ebola.”

Andreea, 41, has battled COVID twice. The first time was in March of 2020, when she mainly had respiratory and gastrointestinal symptoms. Two months later, her hair started falling out in chunks. In November, she got the virus for the second time. For the first two weeks after recovering, she reported feeling really good. 

“I cleaned the house, I took care of my two children, who were also infected, I vacuumed, I cooked,” she said. So Andreea was surprised to discover, on day 15, that she had vitiligo, a condition affecting skin pigment, and autoimmune thyroiditis, or Hashimoto’s disease. “I went to a neurologist at Monza Hospital [in Bucharest], and he told me that lots of patients are left with these symptoms, and that I was lucky I hadn't come to him in a wheelchair, like others have.”

Andreea’s conditions are both neuropathies – diseases of the peripheral nerves that cause a variety of symptoms, from hair loss to memory loss and burning sensations. There are already studies investigating the correlation between COVID-19 and disorders associated with the nervous system, but it’s still unclear whether they are a direct consequence of the virus, or connected to other chronic or autoimmune diseases in patients.

Andreea’s hair stopped falling out in January of 2021 after she underwent treatment recommended by a neurologist, but other symptoms have persisted. Memory loss, headaches, body aches and vision problems make her daily life difficult. “I often hide my children's phones because they spend too much time on them,” she said. “But then I forget where I’ve put them. I feel like I'm 20 years older.”

In March of 2020, Ionuț, 38, contracted COVID. In addition to the classic symptoms, such as a cough, chills and loss of smell and taste, he also had back pain that ended up persisting for nearly six months.

Ionuț described the pain as feeling like he’d been run over by a car. At the end of April, after multiple medical appointments, he was diagnosed with heart problems and told he had to undergo surgery. Doctors told him that it was a problem he’d had since birth, but Ionuț is skeptical: “Before March, I was fit as a fiddle, now I’m a vegetable.”

Ionuț followed the advice and had the heart surgery. But despite the back pain disappearing, he’s since started experiencing headaches and leg pains, and his eyesight has deteriorated. He’s also had panic attacks, although anti-anxiety medication has made them a rarer occurrence.

According to Mincu, in the last year, about 30 percent of his patients have suffered ongoing problems after recovering from COVID. The doctor said the expectation that symptoms will clear up straight away is unrealistic.

He cited the UK’s NICE guide as the “most complete” manual for handling persistent COVID side effects. The guide recommends waiting four weeks from the date of infection before consulting a doctor about ongoing symptoms.

Mincu also cited UK data collected by the NHS that showed, 14 days after the onset of the disease, 50 percent of people still have symptoms. That percentage drops to 4 percent after three months. “I’ve had only one patient whose symptoms persisted for more than six months, and even then they disappeared after seven or eight months,” he said.

In an ideal world, Mincu said doctors with different specialities would be collaborating toward an official guide on long COVID. The problem is, most are busy dealing with the most pressing COVID cases. In the meantime, the British government has announced it will invest more than €20 million towards long COVID research.

“It will probably be a few more years before we really understand the disease and its consequences,” warned Mincu.