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The Minds of COVID ‘Long-Haulers’

Kelsey Tyler

During her hospital stay, Heather-Elizabeth Brown received the same warning from one doctor after the next: Be prepared for mood swings. After spending 31 days on a ventilator to fight COVID-19, Brown, 35, was told she might become easily agitated or angered. “So many people mentioned it to me,” she says, “that I first thought, ‘Am I going to be that bad?’”

The changes Brown was warned about started to surface about two months after she left the hospital. One day, Brown recalls, she asked her mom, who was caring for her, for a popsicle. Popsicles had become Brown’s go-to treat when she first came off the ventilator and needed a feeding tube. “The only thing I could do was suck on ice,” she explains. When her mom told her there weren’t any popsicles left, Brown cried uncontrollably for 10 minutes. “Not being able to get it for myself — in addition to it not being available even if I could — kind of did it for me.”

Heightened emotional reactivity isn’t the only lingering mental-health effect of the coronavirus for Brown. She also has bouts of sadness and depression, and high levels of anxiety — especially about sleep: “I’m always worried I will slip into unconsciousness again and miss another month of life.”

“I’m different than I was before.”

Brown, an ordained minister, has gone back into the hospital three times since her initial stay for COVID. Because she’s still recovering from the illness, she can’t do many things that psychologists recommend to help manage her mental health. Her physical stamina is too low for exercise, for instance. “I don’t have full control over my own emotions,” says Brown. “I’m different than I was before.”

Marissa Oliver, a 36-year-old membership and event manager, can relate. She’s been “riding the COVID coaster” from home since March 11. “I’d start to feel OK for a few days and think I was getting better, so I’d go back to work. Then I’d have another horrific breathing attack and be back in bed for several days,” she says. At first, the physical symptoms — lung pain, extreme fatigue, nausea, chronic constipation, chest tightness — were so intense, she didn’t have time to focus on her mental health. But after about two months, “I started to realize my personality was changing,” she says. Since having a panic attack in May, she’s experienced uncontrollable anxiety about every two weeks, along with days-long periods of depression and grief.

Explainers

Have You Been Charged a 'COVID Fee'?

For several months, doctors told her just to rest. “One misdiagnosed me with anxiety and told me to go home and drink a glass of wine,” Oliver says. Finally, in July, she got an appointment at the post-COVID center at Mt. Sinai in New York City. “They took my symptoms seriously,” she says. After completing a pulmonary rehabilitation program, she’s now following a program to help regulate her autonomic nervous system and using an inhaler to reduce lung pain. 

But the mental anguish continues, so she’s working with a therapist who specializes in trauma care. “I only feel hopeful when I don’t have [physical] symptoms,” she says. “As soon as the symptoms come and worsen, my mood takes a turn for the worse.”

Long COVID research

Brown and Oliver are far from alone. In April, the COVID-19 Patient-Led Research Team surveyed 640 COVID “long-haulers.” Although the term “long-haulers” lacks a fixed definition, it’s become a label for people who have “long COVID,” meaning those who take more than two weeks to recover from the disease, says Dr. Natalie Lambert, an associate research professor at Indiana University School of Medicine. About 9 in 10 survey respondents said they experienced ongoing health issues after having COVID, and that their symptoms have changed over the course of their recovery. The most common mental symptoms were brain fog and concentration issues, reported by 70 percent of respondents.

Other research paints a similar picture: Over half of respondents in a survey of more than 1,500 long-haulers, run by Lambert and the support group Survivor Corps, said they had trouble concentrating or focusing, with about half reporting anxiety and one-quarter reporting sadness. And a recent study found that 32 percent of COVID patients had a condition, encephalopathy, marked by altered mental function. These patients were more likely to experience worse medical outcomes and struggle with everyday tasks like cooking and paying bills.

“I’ve forgotten to look both ways before crossing the street. It’s a very, very scary type of confusion.” 

“It’s long, ongoing, confusing and incredibly demoralizing,” says Hannah Davis, 32, who’s been sick since March 25. “I lost all my executive functioning overnight. I started a fire because I was cooking something and forgot. I’ve forgotten to look both ways before crossing the street. It’s a very, very scary type of confusion.” 

Davis joined the Patient-Led Research Team, a self-organized group of long-haulers conducting their own research on COVID. The group is currently conducting a second survey focusing on mental health and the neuropsychiatric effects of long COVID with results expected in late October. “I’m having a tangible impact on the world,” she says of her decision to join the team. “Although I would consider myself a mild COVID case, I don’t feel like myself at all.”

Working on the “why”

While it’s clear that neuropsychiatric symptoms are common among long-haulers, the “why” remains a mystery. “We need more data on how exactly SARS-CoV-2 enters the brain and whether the virus can infect neurons and other cells in the central nervous system,” says Dr. Suzi Hong, associate professor of psychiatry and family medicine and public health at the University of California San Diego. In a paper published in July, Hong and other UCSD researchers proposed several ways the coronavirus might lead to mental changes.

One possibility is that the virus invades the central nervous system, either via the olfactory system or by crossing the blood-brain barrier. “A virus in the brain would lead to neuronal damage even without directly infecting the neurons themselves,” Hong says.

The effects could also be connected to the “cytokine storm” seen in some severe COVID cases. Cytokines are proteins that help regulate the body’s immune response. It’s good for a COVID patient to mount a “swift and robust” immune response to the virus, Hong says, as long as the reaction is temporary. If the immune system overreacts, either the inflammatory cytokines or the activation of cells in the brain — or both — may have detrimental effects on the brain, she explains. 

Plus, inflammatory cytokines outside the brain are associated with brain changes also seen in people with mood disorders, explains Mario Gennaro Mazza, of Italy’s Vita-Salute San Raffaele University. When Mazza and other researchers in Italy screened 402 adults a month after being treated for COVID in a hospital, 42 percent and 31 percent reported symptoms of anxiety and depression, which were each linked to higher inflammation.

There’s also evidence that the coronavirus infects gastrointestinal cells. Research supports a connection between gut and brain health, so some COVID researchers believe that SARS-CoV-2 first disrupts the microbiome, which then triggers changes in mood and cognition, Hong says.

Lastly, immunosuppressive medications such as steroids are being used in some cases to control hyperinflammatory reactions to the coronavirus. There’s some evidence that these drugs can cause changes in mood, cognition and psychopathology. 

Most likely, several things are at play, including the fact that anyone with COVID is facing a new disease with unknown short- and long-term consequences. “Significant psychological stressors such as fear of severe and unknown disease, loneliness, stigma and denial will undoubtedly contribute to widespread emotional distress and increased risk for psychiatric illness in COVID-19 patients,” Mazza says.

“Some people don’t believe you or they don’t check in. Others aren’t ready to accept the disability I have now.”

As with everything coronavirus-related, more clinical research is needed to understand why this virus leaves its mark not only on the body but also on the mind. But amassing research takes time and money. Long-haulers struggling to regulate their emotions and perform cognitive tasks can’t wait for study results to roll in. They need help, or at least acknowledgement, now.

Even if researchers can’t prove these neuropsychological changes are biologically based, Lambert says we still need to take them, and any other lingering effects of COVID, seriously. Based on CDC data, Lambert believes at least tens of thousands of Americans will be long-haulers. “The fact that so many people are experiencing distress indicates that we need to see this as a legitimate side effect of the virus and something that’s deserving of treatment,” she says. Shifting the public’s mindset will help these long-haulers get treatment and non-medical support. “The disbelief they encounter from their employers and family members has financial and mental wellness impacts,” Lambert says. 

For now, most patients are finding support through therapy, as well as in online groups like Survivor Corps and Body Politic. “One thing that’s really hard is losing family and friends. Some people don’t believe you or they don’t check in. Others aren’t ready to accept the disability I have now,” Davis says. “There’s so much love in the community and complete acceptance of who you are and what you’re capable of at any time.”

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