‘It’s not in my head’: They survived the coronavirus, but they never got well

They caught the coronavirus months ago and survived it, but they are still stuck at home, gasping for breath. They are no longer contagious, but some feel so ill that they can barely walk around the block, and others grow dizzy trying to cook dinner. Month after month, they rush to the hospital with new symptoms, pleading with doctors for answers.

As the coronavirus has spread through the United States over seven months, infecting at least 7 million people, some subset of them are now suffering from serious, debilitating and mysterious effects of COVID-19 that last far longer than a few days or weeks.

This group of patients wrestling with an array of alarming symptoms many months after first getting ill — they have come to call themselves “long-haulers” — are believed to number in the thousands. Their circumstances, still little understood by the medical community, may play a significant role in shaping the country’s ability to recover from the pandemic.

By some estimates, as many as 1 in 3 COVID-19 patients will develop symptoms that linger. The symptoms can span a wide range — piercing chest pain, deep exhaustion, a racing heart. Those affected include young and otherwise healthy people. One theory is that an overzealous immune system plays a role.

Some are unable to work. Many may need long-term medical care.

Still, many say their biggest challenge is getting other people simply to believe them.

“There is just a lot of misunderstanding,” said Marissa Oliver, 36, who, long after she experienced classic virus symptoms, dragged herself to an urgent care clinic in New York because she was still struggling to breathe. The medical professional’s advice? Go home and have a glass of wine.

“I started sobbing in the lobby,” Oliver said, adding that she was misdiagnosed as having anxiety. “I’ve never been this sick in my life.”

In interviews, four people struggling with lingering conditions long after they had the coronavirus described their experiences. Their words have been edited and condensed for clarity.

199 DAYS SINCE SYMPTOMS BEGAN

‘I was a weight lifter, kayaker, hiker, white-water rafter. I can’t do anything right now.’

Karla Monterroso, 39, of Los Angeles, leads an organization that advocates for the representation of Black and Latinx people in tech, but has not been able to work full time since March. She could not get tested until about a month after she first fell ill, and only recently tested positive for coronavirus antibodies.

Before this, I was a weight lifter, kayaker, hiker, white-water rafter. I can’t do anything right now, physically, without harming myself. It’s like someone cut your battery pack in half and doubled the charging time. I have to prep myself mentally for a shower.

The first few months, I didn’t believe myself. Is this in my head? When I got the antibody test a few weeks ago saying I had a positive antibody test, I sobbed for like an hour. I was like, it is written on paper that this is what happened to me. Before then, you’re sitting there constantly questioning your own body, and no one in the medical community believes you.

There has been no public health campaign about this. I have relatives that believe if you have hot water and lemon, this will cure COVID. I have relatives that believe that I am sick because I work too much.

I could have just as easily been exposed to this thing and not have had symptoms and be fine today. There is no control over this. It is all Russian roulette, and you can minimize your times up at bat, but you can’t zero them out. That is a very uncomfortable truth.

Manuella Fehertoi, who has been unable to work her banking job and now needs oxygen around the clock, at her home in Middletown, NJ, Sept 1, 2020. (Celeste Sloman/The New York Times)

189 DAYS SINCE SYMPTOMS BEGAN

‘At one point, I was thinking about a will. I was thinking I wasn’t going to make it.’

Candace Taylor, 38, was working in the billing and collections department of an Atlanta hospital when she tested positive for the virus in March. She described long-term coronavirus symptoms and a worsening of a previous chronic pain condition.

I’ve had chest pain every day since March. I’ve developed internal shaking. I get the dizzy spells. I’ve developed tachycardia. Tiny blood clots. Ear popping. I’ve lost my voice. There are days I go without talking. I kept asking, when is this going to stop? I couldn’t lay flat. I had to sleep in a recliner for over 2 1/2 months. At one point, I was thinking about a will. I was thinking I wasn’t going to make it.

I have not been able to work. My job consists of speaking eight to 12 hours. With me being hoarse, I can’t even talk 15 minutes.

I have not gotten paid from my employer since May. My disability was denied. It’s like this disbelief. They don’t believe me and thousands of us COVID long-haulers that have these symptoms.

76 DAYS SINCE SYMPTOMS BEGAN

‘It’s not in my head.’

Tony Pinero, 57, owned a rideshare business in Las Vegas before testing positive for the virus in July.

They say you don’t have COVID anymore, you are COVID-free, but that is not true. Now I have post-COVID, and post-COVID seems like it’s worse. I still have the headaches. I still feel dizzy. The thing that worries me the most is me being winded all the time. It’s hard for me to walk up the stairs.

This has been such a detriment to my business that my business is virtually closed. I can’t drive.

My doctor is saying, ‘Hey, Tony, it’s just in your head.’ No it’s not. It’s not in my head. I don’t want to sit here and not be able to breathe. I don’t want to sit here and stay and do nothing. I want to go to work. I have to pay my car payments. I’ve got to pay my credit cards. I’ve got to pay my bills. Why would I want to sit at home?

188 DAYS SINCE SYMPTOMS BEGAN

Candace Taylor, who has been unable to work since contracting the coronavirus in March, in Rosewell, Ga on Sept 25, 2020. (Lynsey Weatherspoon/The New York Times)

‘It’s like one big cocktail to make you anxious, frustrated, depressed.’

Manuella Fehertoi, a bank worker in Middletown, New Jersey, tested positive for the virus in March. At 61, she had a history of asthma, and was hospitalized for seven days. Since then, she has been on oxygen at home and unable to work.

It’s depressing. I am still as sick as I was back then. I still have spikes of my fever. I still have spikes of chest pain or difficulty breathing. There are days I can barely come out of bed. I had a minor stroke at the end of May. Still, today, the upper right side of my face is numb.

Don’t get me started on my hair loss. I try not to look in the mirror too much, because it is just devastating. I used to colour my hair and get all makeup going. I look like I have aged 20 years. There is no shame, but it’s not me.

When people are for so long feeling this bad, constantly in pain, constantly in such anxiety of the unknown, they turn to the doctor, and the doctors don’t know either. That starts to bring you down, that starts to be part of your life. It’s like one big cocktail to make you anxious, frustrated, depressed. I just want to get back to being me. Lively, funny. I loved my job. I loved the people I worked with. Doing things with my children. Going to the beach, swimming, playing tennis. I can’t do anything. I can’t even walk around my backyard.

© 2020 The New York Times Company