41-year-old Michele Hart began feeling common symptoms of COVID-19 in late April. She tested positive for the disease. Pretty soon her symptoms began to change.

“Mine went neurological so it really started to affect my central nervous system quite a bit,” Hart said. “I started to have a lot of weakness, numbness, hard to stand.”

As well as shooting nerve pain. She was diagnosed with Guillain-Barre Syndrome, a condition in which the body’s immune system attacks the nerves. She then tested negative twice for COVID-19, only to have her blood pressure skyrocket with even more symptoms.

“Just horrid horrid nausea, like can’t move, can’t breathe, can’t blink nausea,” Hart said.

She was tested again. 

“Two days after that she calls me and said I don’t know what to tell you but your test came back positive,” Hart said.

“I know this coronavirus is different than any viruses we’ve dealt with in the past,” said Dr. Phil Stahel, Chief Medical Officer at Medical Center of Aurora, CO. 

Stahel is skeptical that this coronavirus can reinfect patients but said the way it attacks the body remains a mystery in many ways. Each patient and treatment is different. COVID-19 symptoms vary widely and can include mental fogginess, even delirium. They can be cyclical and linger for months, prompting the expression “long termer” or “long hauler.”

“Yes absolutely, I consider myself to be that,” Hart said.

The Survivor Corps Facebook group to which she belongs now has 65,000 members.

And medical experts are now focusing more of their attention on this phenomenon. Britain plans to put over $10 million into a new study to examine the long-term impact of COVID-19 on patients.

As Hart rides her COVID-19 roller-coaster, she said some doctors have regarded her condition skeptically. She’s also well aware that this disease is not at the forefront of many people’s minds, that many simply want to move on.”

“I get that, that makes a lot of sense but coming from my lens, my perspective, you know, it’s a nightmare,” Hart said.

She was quarantining when we spoke to her.

“The first thing that comes to mind is the isolation, being isolated from my family again,” she said when asked to describe the toughest part of her situation. “It’s hard after having been isolated for such a long time already… Worried that I’ve infected some of my family members now.”

Recovery from COVID-19 can also be long-term.

“Many of our patients, when they’re discharged here, they have to go to rehabilitation as in-patients for several weeks or even months to regain their strength, their function, and particularly their lung function,” Stahel said.

“Shooting nerve pain consistently,” Hart said when asked about her current symptoms. “I’m having it while I’m talking to you.”

She’s a psychotherapist who’s been unable to work and can barely get out of bed some days. She simply wants some answers.

“We really really want doctors to begin to take our symptoms and our experiences more seriously, that they’re real,” Hart said. “I would love to have any type of help possible at this point.”

This disease is sticking with us, much more than we ever could have imagined. 

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