COVID Long-Haulers Share Their Roads to Recovery

Most people recover from COVID-19 within two weeks. Not these survivors.

Covid long-haulersAt the beginning of 2021, the United States finds itself at an inflection point of the COVID-19 pandemic. Over 400,000 people have died. The vaccine is rolling out, if in an uncoordinated manner. Researchers say we have reached the peak of the surge. But for many survivors, the battle is far from over.

Coronavirus long-haulers experience a range of symptoms, most commonly fatigue, brain fog, shortness of breath, joint pain, and chest pain.

Most people recover from COVID-19 within two weeks. Yet a smaller cohort of survivors, about 10 percent according to recent estimates, experience long-term health issues for four weeks or longer. These Coronavirus long-haulers experience a range of symptoms, most commonly fatigue (especially following bouts of physical activity), brain fog, shortness of breath, joint pain, and chest pain. Other reported symptoms include everything from depression to hair loss to renal disease to the onset of type 2 diabetes.

As you might imagine, long-term COVID-19 is incredibly disruptive to a person’s life. Months after their initial recovery from the Coronavirus, many long-haulers still require reduced work schedules, or are no longer working. To get a clearer picture of what life is like for Coronavirus long-haulers on a personal level, we spoke with two survivors with very different stories.

Heather-Elizabeth Brown, a 36-year-old corporate trainer in Detroit, MichiganHeather-Elizabeth Brown

Nine months after falling ill with COVID-19, Heather-Elizabeth Brown, a 36-year-old corporate trainer in Detroit, Michigan is still recovering. Like many other people who were infected early in the pandemic, she was caught in the tangle of overwhelmed hospitals, inaccurate testing, and inexperience treating a new and terrifying virus.

In early April, Brown came down with a fever and was feeling fatigued. As a volunteer chaplain for the police who was fortunate enough to qualify as a first responder, she was able to get tested for the Coronavirus. It came back negative. She was relieved, at first. But her symptoms worsened over the next four or five days, so she got another test. Again, it came back negative.

"I knew I was sick, and it wasn't just the flu. I didn't understand why I was getting these negative test results.”

“At that point, I knew that I was sick, and it wasn't just the flu. I didn't understand why I was getting these negative test results,” Brown says. A telehealth nurse practitioner told her she had all the symptoms of COVID-19, but that some of the tests had up to a 33 percent rate of false results. Brown was advised to continue self isolating. Her fever rose, and she started having gastrointestinal issues.

As her symptoms became even more severe, Brown went to the emergency room, or to be more accurate, she arrived at the drive-through screening. That’s how things were in Detroit, New York, and other cities around the country by mid-April. Hospitals were beyond capacity and emergency rooms did not have the space to keep potentially infected patients far enough apart.

Brown was told that as ill as she was, she did not meet the criteria to be admitted, and was sent home. She returned to the emergency room a second time and could not get a test but was given a positive diagnosis based on her symptoms in the absence of an available test. As she wasn’t in obvious respiratory distress and her oxygen levels weren’t dangerously low, doctors prescribed hydroxychloroquine and told her to get a pulse oximeter. She was sent home yet again.

“I remember being at home that evening and telling my mom that I felt like if I went to sleep, I wouldn't wake up.”

“I remember being at home that evening and telling my mom that I felt like if I went to sleep, I wouldn't wake up,” Brown recalls. Her fever spiked to 103, she was having trouble breathing, and now her oxygen levels had dipped dangerously low. It hurt to breathe. A third time she went to the emergency room. A third time she took a COVID test. Finally, it came out positive. A chest x-ray revealed she already had advanced COVID-induced pneumonia, and she was told that she finally was sick enough to be admitted to the hospital to receive treatment.

Black, Latinx, and Indigenous people are four times as likely to be hospitalized from COVID-19, according to the CDC

At this point in the story, it’s hard not to speculate how things might have been different if Brown had received the kind of care she needed at the earliest signs of symptoms. She is Black, which puts her at an elevated risk for becoming infected with COVID-19 in the first place, suffering more complications, and dying.

Black, Latinx, and Indigenous people are four times as likely to be hospitalized from the virus, according to the CDC. On social media, stories of inadequate care for BIPOC have been circulating, such as a video from Indianapolis doctor Susan Moore, who later died. Another woman, whose entire family was infected, spoke out recently via Twitter that her mother was told by her white doctor not to go to the hospital unless her or her children's lips turned blue. "She's Black. Her lips will not turn blue," @DaniAtomicus tweeted.

Doctors put Brown into a medically-induced coma and on a ventilator. She would stay on that ventilator, in that coma, for 31 days, from April 18th to May 19th.

“It was a completely surreal experience,” Brown says. Her brain was still active, and she had vivid dreams. Waking was also surreal. “I remember opening my eyes and people coaching me to breathe,” she says. The first few days were a confusing, disorienting blur. “Everything had to be explained to me, because I had been out for so long. Nothing made sense. When they were telling me what day it was, and they turned on the TV, I was like, what’s going on?”

Brown remained in the ICU for another week and was released from the hospital on June 1st. But she has had to return numerous times. She was treated for blood clots in her leg, and complications from those clots. During her month in the coma, she suffered a stroke while on the ventilator, lost the ability to walk, and the left side of her body became weak. Between that and the painful blood clots, she had to re-learn how to walk through inpatient rehab, working her way out of a wheelchair into a walker until she would walk unassisted.

“I still had the expectation that my body was going to bounce back, especially when it came to the physical therapy part and walking again.”

Doctors prepared Brown for a long recovery. There is no standard timeline, of course, but she was told to expect at least three days of recovery for every one day her body was inactive. “I didn’t have any grandiose dreams of running a marathon after I got off the ventilator,” Brown says. But she was 35 when she fell ill, and in that younger demographic of people who tend to recover faster than older survivors.

“I still had the expectation that my body was going to bounce back, especially when it came to the physical therapy part and walking again,” Brown says. She was frustrated with how long it took her to stand and walk. Doctors told her it could be six to nine months. “Some of us have that Superman complex, like they said it’ll be this long for me, but I can do it a little bit faster. That hasn’t happened," she says.

Brown is aware of the possibility of medical bias, but she doesn’t like to look back and wonder, “What if?” First of all, it makes her sad. Secondly, she points out that she benefited from her education, having health insurance, and her first responder status. She emphasizes that she knows firsthand how overwhelmed hospitals were at that time. “I think everyone was trying their very, very best,” she says. “I truly believe that.”

Several months later Brown is still dealing with a chronic lung condition that may stay with her for the rest of her life. She’s still in pulmonary rehab, and she struggles with fatigue and brain fog. In November she was diagnosed with type 2 diabetes. This came as a surprise, especially since she had not been prediabetic before COVID-19. 

In addition to her recovery, Brown now has to learn how to manage diabetes, which for her includes injecting insulin multiple times a day. “On top of the adjustment of having to deal with diabetes as a health concern, there’s also the emotional and psychological part of giving myself injections because I absolutely hate needles.” She’s hoping that her glucose levels will stabilize, she’ll be able to drop insulin, and she’s grateful for the use of a continuous glucose monitor.

Even Brown’s eyesight has changed, probably because of the diabetes. Her eyeglass prescription has shifted by five points, the biggest shift her optometrist had ever seen. She was prescribed temporary contact lenses because her prescription changes every other week.

Another stressful aspect of long-haul COVID is how little we still know about it, and how dramatically it disrupts our sense of security

Another stressful aspect of long-haul COVID is how little we still know about it, and how dramatically it disrupts our sense of security. “This is something that's new and there's not a lot of information about what to do and how to do it,” Brown says. “Everyone's just kind of playing it by ear and learning as we go.” Clear answers are hard to come by, and that’s difficult to face if you’ve always expected that the medical world will be there to cure you, no matter what happens. 

“We take for granted the idea that if something goes wrong, doctors will be able to fix us. We assume there will always be ample space in hospitals for our treatment. What we’re seeing is that there are serious limits to how many people hospitals can treat at one time," she says.

Given all of this, it’s a good thing Brown has a strong support network, starting with her family. Her parents, who are in their 70s, live in Mississippi, but her mother and an uncle came to Michigan to be with Brown while she was in the hospital. They stayed with her for another three and a half months to help with her recovery. Brown also has a large “church family” from Citadel of Praise in Detroit who have brought her meals, made deliveries, and provided other kinds of everyday support.

Meanwhile, Brown’s employer has also been a source of relief. She had just started working for Quicken Loans in March, on the job for all of three weeks before she fell ill. “My company was really supportive,” she says. They held her position for her and stayed in contact with her mother for updates.

When Brown wanted to start working again part time just to regain a sense of normalcy in her life, Quicken made accommodations for her, enabling her to work around her numerous doctors appointments. Between physical and pulmonary therapy, blood tests, and other check-ins, Brown has four to five appointments a week. “We know you want to come back, and we’ll figure out a way to make it work,” her employers keep telling her. Not feeling pressured to get back to full-time hours makes a huge difference in helping her recovery.

Brown’s COVID-19 ordeal has forced her to acknowledge her fragility as a human being, and to confront her mortality “in a very real and tangible way.” Faith plays a large role in dealing with the ups and downs of her now chronic illness. “I’ve had to lean heavily on my faith to get me through some of some of the more challenging diagnoses and painful moments,” she says.

Then there is the COVID-19 support group Brown found with Body Politic, a queer, feminist wellness collective. “Before I found Body Politic, I was actually in a different community. It was a Facebook group for people with COVID. "I kind of felt a little out of place," she says diplomatically. Other members were talking about having a slight fever and body aches, or cabin fever on day three of quarantine. “It felt weird. I’m supposed to be like, ‘I just got out of 31-day coma’?”

When she came across an article about Body Politic, she felt like she’d finally found people with the same depth of experience she had. The group shares information about testing, recovery, news, and even the terms associated with COVID-19. “It was really helpful, being able to read and realize that there was a larger community I could identify with. Just knowing that you're not the only one out there.”

"Even in the midst of what happened, the fact is that I survived, and I now have the opportunity to have these conversations and to be an advocate for other COVID long-haulers."

Through all her ordeals, Brown now finds herself in a place of gratitude for her life, of grace and acceptance. She is also buoyed by a greater sense of purpose. “I am where I am. Even in the midst of what happened, the fact is that I survived, and I now have the opportunity to have these conversations and to be an advocate for other COVID long-haulers,” she says.

“I hope that people will continue to realize that this virus is real, that it's dangerous, and that they do what they need to do to protect not only themselves, but other people in our communities who are most vulnerable. It's important to continue to adhere to the guidelines, even if it's a killjoy. We have to be community-minded. We have to realize that one person may get it and it may not affect them severely. But if they transmit it to someone else, they may not be as lucky. They may not have the same presentation. That's what's most important, is not only protecting ourselves, but protecting everyone else.”

A "moderate" case of the Coronavirus that stretched on for 17 weeks

Amanda Thebe, a 50-year-old fitness expert and menopause educator in Houston, TexasAmanda Thebe

When Amanda Thebe, a 50-year-old fitness expert and menopause educator in Houston, Texas, developed itchy eyes and a sore throat towards the end of March, she thought she had allergies. Antihistamines didn’t help. She picked up a bad cough and started wheezing, and still she thought it might be allergies, maybe combined with a cold. Three weeks later, she was feeling worse and came down with a fever that wouldn’t go away. When she started having trouble breathing, she went to a hospital for a COVID-19 test.

“I started going out for these little walks, but they were just so difficult. When I’d come home, I’d have to go back to bed for two or three days to recover."

The test confirmed that Thebe had the Coronavirus, but her case was relatively moderate at the time. She was able to convalesce at home without hospitalization. Three weeks later, she started “feeling human” again, except for a tenaciously severe fatigue she couldn’t shake. “I started going out for these little walks, but they were just so difficult. When I’d come home, I’d have to go back to bed for two or three days to recover,” she says.

At first Thebe thought she was pushing herself too hard, too soon. But as the weeks slipped by, and her fatigue persisted (especially after any physical activity, such as walking), and she knew this was no ordinary recovery. It would be another 17 weeks from the time she emerged from the worst of the virus before she started feeling close to the way she had before.

“It was crazy,” she recalls. “I just couldn't do everyday things. I couldn't walk up the stairs. I had terrible shortness of breath, chronic fatigue, the type of stuff you can't sleep off.” It reminded her of her battle with perimenopause (which she documented in her book, Menopocalypse), when she had severe and confusing symptoms. This time, she felt desperate and isolated.

Fortunately, Thebe’s thoughtful primary physician saw similarities between her symptoms and those of post-viral syndrome, a disease that can follow a viral infection, and which causes chronic fatigue. He told Thebe that it could take her four to six months before she turned a corner. He admitted doctors still had much to learn about this post-COVID-19 condition, but that he would try to do what he could to help her feel better.

Thebe went on a course of steroids and other medications to reduce inflammation. She started seeing a pulmonologist for her shortness of breath and chest pain. Surprisingly, that doctor started treating her for acid reflux. Gastrointestinal problems like GERD (gastroesophageal acid reflux) are a less-known, but fairly common symptoms among COVID-19 patients. Apparently, acid was aspirating into Thebe’s lungs, and that’s what was causing the shortness of breath. Bingo! Once her acid reflux was treated, Thebe saw her breathing issues dissipate.

As a former fitness trainer who loves lifting weights, swimming, and all manner of exercise, taking a break from physical activity was disappointing but necessary. Thanks to her experience with perimenopause, Thebe already knew how to scale back to accommodate her energy levels. Still, she admits feeling demoralized at times as she gradually began introducing movement back into her life. 

“Even when it went on for months and months, I kept saying ‘I’m sorry, I feel like a failure.’”

“At home, I didn’t want to admit that I was sick, so I was trying to push through,” Thebe says. “My family was amazing. They could clearly see that I still wasn’t well.” Her husband and two teenage sons kept making her sit down and rest every time she attempted household tasks. “Even when it went on for months and months, I kept saying ‘I’m sorry, I feel like a failure.’” Thebe admits she was harder on herself than anyone else. She felt especially bad because she’d had such a difficult time with perimenopause years earlier, and now here she was, struggling with post-COVID fatigue as well.

She also felt guilty about contracting COVID-19 in the first place, as if she’d done something wrong, even though she’d been very careful about wearing a mask and social distancing. It helped when one of Thebe’s friends texted her, “You have to quit talking like this. There’s so much we don’t know about this disease, and you’ve been hit so hard. Please stop apologizing for it.”

Fortunately, Thebe joined Survivor Corps, a support group founded by COVID long-hauler Diane Berrent. It was through this group that she found out how common gastrointestinal issues were, and how many other survivors have been left with seemingly permanent conditions. Fortunately, CT scans show no permanent damage to Thebe’s lungs and heart. “But there are people with lung scarring, and they’re simply not recovering,” she says.

Thanks to the support of family, friends, and Survivor Corps, Thebe had the courage to start talking about her long recovery on her Instagram. “It garnered so much attention because people were like, ‘I've got it too, and I'm not recovering. Thank you, it’s really helpful to know how you’re doing.’”

Now, all these months later, Thebe is happy to report that she’s feeling “super-fit and healthy” again. She does have some residual gastrointestinal issues, but they're manageable. She’s aware that other long-haulers are still struggling and trying to solve the mysteries behind their protracted recovery.

“The way we talk about health sometimes, we add a kind of layer of morality on it, like if you’re not healthy it’s your fault. There’s so much we still don’t understand about this Coronavirus, and there are so many factors outside of our control."

That’s why Thebe wants to give her fellow Coronavirus long-haulers a glimmer of hope that they can recover at least some of their energy and vitality. More than that, she thinks it’s important that people not feel shame. “The way we talk about health sometimes, we add a kind of layer of morality on it, like if you’re not healthy, it’s your fault,” Thebe says. "There’s so much we still don’t understand about this virus, and there are so many factors outside of our control."

At first, Thebe wanted to know why her recovery was taking so long. She followed her natural curiosity, and started reading all of the research she could find. She tried alternative treatments. She wondered if there was some underlying cause. Was it because she had an uncommon blood type? “I needed answers so that I could stop blaming myself,” Thebe says. It was her primary care physician who finally told her, “We may never know why, and you need to accept that.” This acceptance of the unknown has been an important piece of Thebe’s emotional recovery from long-haul COVID-19.

Another turning point for Thebe was finding a guide to managing post-viral fatigue from the National Health Service in the UK. As an athlete, Thebe’s practice had always been to push her physical limits. But she learned that when it comes to long-haul COVID-19, this was the exact opposite of what she needed. In this case, exercise was not necessarily her friend. The post-viral fatigue guide “spoke about fatigue, and it talked about working within an energy envelope,” she says. In other words, doing a little bit less than what you think you can (or should) do is the most helpful strategy. When Thebe wanted to take a walk, she would go out for only five minutes, even if she felt she could last for ten.

Thebe’s practice became what she calls “fitness snacking,” tiny bits of exercise that made her feel better, but that didn’t push her energy levels at all. Working within that energy envelope was another pivotal moment for Thebe. Along with a commitment to eating the most nutrient-dense food she could and staying hydrated, this approach helped her both physically and mentally. Even better, sharing her approach has helped other COVID long-haulers following Thebe’s social media. “It makes them feel like they’re getting small wins as well,” she says. "Overtime, those small wins can make a huge difference."

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