Isabela Pauer used to work out four or five times a week. Now, she struggles to brush her teeth and has fainted three times in the shower.

Pauer, 22, had been living in Barcelona for the last two years before returning to Northeast Ohio about four weeks ago.

She was healthy, prior to coming down with an illness about six months ago. Pauer said one of her friends, and that friend’s entire office, tested positive for COVID-19, about two weeks before Barcelona put a lockdown in place.

“All my friends, we had been with her like every single day, so I had assumed I was going to get it,” Pauer said.

Pauer wasn’t too worried about the symptoms she was getting, since most of the focus at the time was on how the virus affected older people. But then came weeks of persistent chest pain, breathing problems, headaches, and nausea, as well as issues with certain lights and sounds.

“I was really starting to freak out and I ended up going to the hospital,” Pauer said. “And they told me that since I was so young, I should be OK. They didn't really think that it could be COVID just because I had told them it had lasted about like three weeks now.”

The doctors there in Spain told her they weren’t going to test her and told her to come back in another two weeks if she wasn’t feeling better, according to Pauer, who said they did take her blood and gave her IV fluids.

But after another few weeks, Pauer said she “started getting way worse,” with persistent nausea, headaches, and stomach pain. She returned to the hospital, where a doctor again told her that they didn’t believe it was COVID because of how long her illness had lasted. They checked for issues with her lungs before sending her to a gastroenterologist, who told her that her stomach lining was swollen and gave her medicine, to which Pauer said she had what seemed like an allergic reaction.

After yet another hospital visit and dizziness that resulted in fainting, Pauer said the doctors still didn’t take her as seriously as she was hoping they would.

“I ended up like just kind of losing faith in getting any help at all, and I really was in denial, because since so many people are telling me that this couldn't be COVID, I had no idea like what this could have been or what was going on with me at all,” Pauer said.

She started searching online for information about her symptoms and stumbled upon an online support group in Slack called The Body Politic. There, she found thousands of other people who were experiencing similar symptoms with few answers from doctors.

“It was crazy, like the amount of faith that I regained back in getting better,” Pauer said. “I had thought that I was completely alone in the symptoms that I was feeling, since a lot of people that I knew in Barcelona, even if they did get COVID, they had gotten better, so I was worried that this was like completely unique to me.”

She began messaging with other young people, from Europe, Canada, and the U.S. It’s been helpful talking to other people in the same position, but Pauer said it’s still tough to be in pain with no answers, especially given the frustration she experienced in Spain.

“I honestly have never felt that way before, cause every year that's passed by and I got sick, I would go to the doctor, go to the hospital,” Pauer said. “They would give me medicine and help me. But this was different. This is different. Like, no one really knows what's going on. No one really knows how to help.”

Pauer returned to the Cleveland area about four weeks ago, where she’s still been experiencing pain and symptoms, including muscle and nerve pain in her legs.

“My whole body feels like very weighted down. I’m almost dragging myself around places,” Pauer said.

She noted that a gastroenterologist had diagnosed her with postviral IBS, but that medication wasn’t helping.

Pauer also met with an infectious disease doctor who told her getting a COVID test likely wouldn’t show an accurate representation of what she was dealing with, since it had been so long since she first became sick.

About two weeks after she returned to Northeast Ohio, Pauer met with Dr. Anjli Maroo, an interventional cardiologist at the Cleveland Clinic’s Fairview Hospital, who said Pauer described concerns including chest discomfort, heart palpitations, fainting and dizziness spells, and fatigue.

“She came to see me for a lot of those symptoms, but in the process of describing the cardiac stuff, there is all of [these] other symptoms that basically affect every single organ system of her body,” Maroo said. “So it's not one area in particular. She has symptoms coming from her entire body and they are all interconnected.”

Maroo said she had seen this with many of her other patients, both those who had officially tested positive for COVID and those who hadn’t been able to obtain a test.

“I have many patients who describe an illness that clinically sounds very much like COVID, starting from December, January, February, before testing was available or even known, and then starting in February and March, where testing was very restricted or limited,” Maroo said. “And then onwards and even to this point where testing in people who get exposed but are not necessarily yet exhibiting symptoms are having a hard time getting a test, that has been an issue.”

She said that while the traditional COVID symptoms may be enough to get someone a test, there are a lot of other symptoms “that we are only beginning to learn about and understand, which may not quite qualify them for a test at this moment in time.”

Among her patients who describe COVID-like symptoms going back six months, Maroo said a lot of them have described chronic fatigue that restricts their normal activities, brain fog, gastrointestinal symptoms, muscle- and nerve-related pains, and even blood clots and strokes.

Pauer tested negative for COVID-19 twice this past weekend, something Maroo said she had seen in other patients who have recovered from COVID and who have fluctuating test results.

“We've been seeing that in people who are four, five, six weeks out where tests turned positive, then turned negative, then turned positive,” Maroo said. “And we are still, as a health care group, trying to understand a lot of the tests that we get and follow over time.”

Maroo said the fact that Pauer experienced fear in trying to seek help from the health care system when doctors and nurses didn’t know how to treat her is “equally scary for us.”

“We go to work every day with the expectation that we are going to be able to help people and that we're going to recognize what we are telling them and what they are saying to us,” Maroo said. “So the level of uncertainty that we are dealing with every day in terms of listening to our patients, learning from them, trying to appreciate over time what happens to them and doing our best to try to think of what we can offer to try to alleviate their symptoms, it's a learning process for all of us, and it is scary as a doctor, a nurse or any health care provider to not be able to reassure someone that you know exactly how to help them.”

Both Pauer and Maroo expressed concern about the effects of COVID on other young people and on children.

“I know that older people obviously are aware that this is not going to be good if they get [COVID],” Pauer said. “But I know a lot of people that are my age and younger kids as well, they don't understand what this is and they don't understand that this could affect them as well. I was healthy before this. I did not expect this to happen and for it to be this long.”

She expressed concern over the fact that while the mortality rate for COVID-19 is low, she and many others have experienced symptoms for months. She said she wants to raise awareness about “COVID long-haulers,” as they’re being called, or those who get the virus and don’t recover quickly.

“I feel like so many people just take their health for granted right now, and I really hope that changes because it's going to be like really detrimental to a lot of people’s health,” Pauer said.

Maroo agreed, adding that it’s a concern especially for school-age or college-age children, who are in an “important formative period.”

“We have a responsibility to protect them. And we have a responsibility, I think, to protect each other, because as many people who've gone through the experience of what is COVID, either witnessing it or going through it themselves, I think they would tell you very easily, ‘You don't want to get this virus,’” Maroo said. “For all of those reasons, we have a responsibility to look out for each other and to figure out how we can best help each other to get through this with patience.”

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