Brain fog and no cure in sight: Locals on what it's like to live with long COVID

A few weeks after contracting COVID-19 in March 2020, Maryland resident Signe Redfield thought she was getting better.

She no longer felt the exhaustion of her acute infection, a fatigue so extreme she said it was like taking muscle relaxants and, minutes later, "dribbling into your dinner plate." Her breathing improved and she even took up running for the first time in her life.

Then, about three months after her first symptoms, she experienced what she now calls a "COVID crash."

"I had a whole day that was just the acute stage all over again," says the 51-year-old engineer. "And that's when the long COVID symptoms started kicking in."

In the months that followed, a bevy of symptoms would flare up sporadically. Her "spaghetti legs" came back, so wobbly and uncertain that she couldn't hold herself up. Her exhaustion and headaches returned in full force. But she also started experiencing completely new symptoms, including a strange pain in her ribs and gastrointestinal issues. Redfield began tracking her symptoms and, at one point, she'd recorded over 50 different ones.

"Every time I had a reprieve and then the symptoms came back, it was like a new whole sequence of a new COVID happening again," she says.

Redfield is among millions of Americans living with long COVID — a still poorly understood condition with symptoms that range wildly: from exhaustion, to anxiety, to gastrointestinal issues, and cardiac symptoms. Research estimates that as many as 40% of COVID cases globally may lead to long COVID — in the U.S. alone, that could mean around 30 million people are or will be impacted.

For some, symptoms are so severe that they've had to quit their jobs: Too fatigued and exhausted to work, they're left to navigate debt and mounting medical bills without an income. Everyday tasks like showering, grocery shopping, or even completing a jigsaw puzzle can become laborious feats. And while the symptoms are unbearably real, many long COVID patients reported feeling gaslit, doubted, or misunderstood by providers who didn't believe them. Locals who spoke with DCist/WAMU say it's a challenge to reach providers who take their symptoms seriously; when they do, the answers are often unsatisfying.

Despite its prevalence, relatively little is known about long COVID. While epidemiologists and researchers have made progress in the past two years, there's still no standard set of symptoms, or confirmed answers for what causes it or cures it. (Just this week, Va. Senator Tim Kaine, a COVID long-hauler himself, introduced a bill that would expand research efforts into long COVID and work with the Centers for Disease Control and Prevention to better educate both the public and providers about symptoms and treatment.)

In February, Johns Hopkins University and Kaiser Permanente conducted a study to identify the most prevalent symptoms of the illness — a study they hope will serve as a launch pad for scientists and practitioners trying to better understand the condition, says one of the lead researchers, Dr. Michael Horberg.

The study looked at nearly 30,000 adults who contracted COVID in 2020, and identified more than a dozen potential symptoms, including loss of smell, anxiety disorders, and gastrointestinal issues.

"Long COVID is real," Horberg says. "What we're showing is that if you're a physician or clinician and you have a patient who has COVID, you really want to check on these things, 60 days out. Then you can treat it early."

But even if patients make it to a doctor's office for treatment, many say it's disappointing to hear that there really is no established recovery plan.

When Alexandra Simbana made it off the waitlist for an appointment at Medstar's COVID Recovery Program in the summer of 2020, she was beyond hopeful that relief was coming. The D.C. resident and mom of three (including then-six-month-old twins) spent nine days in the hospital after contracting COVID around Mother's Day. While her breathing improved after she was discharged, other symptoms persisted or worsened: She was constantly fatigued, joint stiffness made walking difficult, and sometimes bruising enveloped her entire leg. She had "all of her hopes" pinned to that appointment at Medstar's clinic, after months of visiting different specialists without getting any answers.

"I had my first visit with them and it was such a disappointment," says Simbana. "The doctor who I met with was like, 'I wish the doctors would stop telling people we have a magic bullet...there's no magic, no cure that we have.' It was like I could hear the air coming out of my hopeful tire."

More than a year later, still struggling with fatigue, digestive issues, and liver and kidney problems (just to name a few), Simbana has check-ups with specialists, but the frequency of her appointments has decreased — "not out of a necessity but out of a lack of solutions."

"It takes years, decades to find cures and treatments for things, I understand that," Simbana says. "But when you are constantly battling your body for just any amount of normalcy, it's like, why can't you give me an answer? Why can't you fix something?"

The lack of answers means that patients have turned to one another for support and validation. Online groups like Survivor Corps and the Slack group Body Politic have become a place where patients can find solidarity, compare symptoms, or crowdsource treatment methods.

Redfield was one of the early participants in the Body Politic Slack, particularly the channel for "First Wavers." Even now, she still keeps in touch with some of the folks she messaged with early on, asking things like "has anyone else had dry mouth recently?"

"[When I first joined the group] it was like this huge mountain of stress that I've been carrying around was suddenly about half as heavy," Redfield says. "Now I have somewhere to go, where I can say, this weird thing just happened to me, and 20 people would say, oh, yeah, I've had that for three weeks."

For Elizabeth Mitchell, who is still fairly green in her long COVID journey after contracting a breakthrough case during the Omicron surge in late December 2021, reading through articles and support groups online has been scary, but has also helped her piece together some of what's happening in her body

"You want to be scared? Go on one of the Survivor Corps lists and read everything that they're going through," the D.C. resident says. "I read that New York Times long COVID article and almost had a panic attack."

Despite being fully vaccinated and boosted, Mitchell was in bed for about 10 days after testing positive on Christmas Day, 2021. Like Redfield and Simbana, she says she's improved since the acute infection period but never fully returned to normal. Before, she was famous for pulling all-nighters. Now, she needs at least a few extra hours of sleep to function. She gets exhausted easily, and loses focus in a way she never used to.

"The brain fog is real," she says. "I have trouble with memory, I'm having trouble finding words, I've been really having trouble focusing on things."

So far she's had preliminary labs taken, and everything came back normal. Next, she's visiting a gastroenterologist to address the intense heartburn she's experienced since contracting COVID, and plans to check out George Washington University's COVID-19 Recovery Clinic – a specialized clinic established in the fall of 2020 to try and respond to the helplessness that many patients felt. Treating long COVID requires a much more holistic approach – in part due to the sheer number of symptoms that can occur at once – like memory loss and joint pain. At GW, doctors meet with patients for a lengthy consultation, and help build a treatment plan that connects them with different specialists attuned to the body systems that need attention – like a physical therapist for body aches, or a gastroenterologist for stomach pain.

"It's so important to understand what these people are going through, because these symptoms are life-changing," says Daniel Karel, a primary care physician at the clinic. "Our emphasis at the clinic is on education, because there's no cure, but with education, patients can feel empowered. They can feel like they're maybe more in control of the situation."

Karel says it's not uncommon for a patient to get emotional during their appointments after spending weeks or months testifying to their illness in other doctor's offices, only to be told it's not real. For some, it's the first time that their experience is met with validation, instead of doubt and disbelief.

"Even when I say 'hey, there is no definite treatment,' just hearing that you're not alone, that there's communities of people out there going through this, that we see patients every week that look and sound and are experiencing the same things you are...there's hope," Karel says.

The GW clinic has been a boon to Redfield's well being, she says, after months of going to doctors without getting any answers.

The clinic connected her to a physical therapist who helped her work up the strength to go from doing three wall push-ups, to five wall push-ups. Eventually, she could bend over and clean her counters again without immediately needing to lay down. A speech therapist helped her establish "scheduled boredom" breaks in the day – moments where Redfield will lay down without any screens or people and just stare at a bit of fuzz on her sweater or a run in a blanket, completely shutting her brain off.

"The things I'm doing are not typical medical care things," Redfield says. For example: "make sure to schedule your meetings so you have breaks between them, recognize that you need to stop and rest your brain occasionally. It's much more building a new lifestyle and recognizing how to adapt to that lifestyle than it is traditional medical care."

This kind of emerging, individualized treatment is a ray of hope for those like Redfield who have been suffering in isolation. But getting long COVID legitimized in a doctor's office is only the beginning of the battle. Across the country, those dealing with the condition are fighting with employers and insurance companies, asking them to take the condition seriously. Given the sheer number of people who may at some point deal with long COVID symptoms, infectious disease expert Claire Pomeroy has warned of a "tsunami of disability" in the U.S., one that would force employers, insurers, and the government to rethink disability accommodations and compensation.

Simbana wasn't working at the time of her COVID diagnosis in May 2020, but any plans to return to the workforce full-time have been put on pause as she manages her symptoms. Her husband works full-time, and she says her daughter, now 9 years old, has taken on additional responsibility for watching the twins, now toddlers. But she says this is not the reality for everyone living with long COVID.

As has been the throughline of the pandemic in D.C., Black and Latino residents may be most impacted by long COVID, as they outpace their white counterparts for rates of COVID infection. In D.C., 48% of all COVID positive cases occurred in Black residents, compared to 23% in white residents. (As a Latina woman, Simbana sometimes wonders if her white husband's COVID experience would be drastically different than hers.) A report released in February from the Michigan COVID-19 Recovery Surveillance Study found that nearly 30% of Black residents reported experiencing a mobility disability after contracting COVID, compared to 13% of white residents. Overall, the study found that mobility disabilities post-COVID were more likely to occur in Hispanic and non-white residents, and those with an income less than $75,000.

The condition will also have an unequal burden on employees in high-risk settings, undocumented residents, or those who are otherwise underinsured and whose employers don't have strong disability and sick leave protections.

Watching mask mandates lift and most COVID precautions fall away as case numbers drop, Simbana fears more and more people are going to share in her experience with long COVID.

"I think where we fail as a society and a community is when we look out for just our own interests and not those of our neighbor and those around us," Simbana says. "It's the unfortunate repercussion of folks who have an urgency to return to normal. Public safety doesn't mean just safe for you, it means safe for everybody, and that the cost to the individual is not such a heavy burden for the protection of someone else's life."

For Redfield, despite being fully vaccinated, boosted, getting COVID once, and limiting her exposures, she ended up contracting COVID again this past January. If it weren't for a routine test she took before heading into the office, she wouldn't have thought anything was up – which made her symptoms even more confusing, and threw her system of predicting how and why her symptoms appeared out the window.

Now, she's just trying to take it day by day.

"It's really hard to say I have felt better and worse," she says. "Right now, I am feeling a bit better today. I expect I will feel significantly worse tomorrow or the next day."

This story is from DCist.com, the local news site of WAMU.