Long COVID’s most misunderstood symptom

Long COVID’s most misunderstood symptom, On March 25th, 2020, while chatting with two pals, Hannah Davis suddenly realized she didn’t understand a single word of any of their messages. That should have been the first red flag that she was infected with COVID-19.

It was the turning point in her life when her previous existence shrank into the present one, and the first time she had experienced “brain fog.” Despite her background in artificial intelligence and her ability to understand complicated systems with ease, she now “falls into a mental wall” when asked to do anything as routine as filling out a form. Her once-sharp memory now seems hazy and transitory.

Typical day-to-day tasks like grocery shopping, cooking, and cleaning can become excruciating challenges. She no longer has access to her mind, or what she terms “the extras of thinking,” which include things like fantasizing, planning, and imagining. She explained to me that the fog “is so engulfing,” meaning that it permeates all aspects of her existence. Though her other long-term COVID symptoms have come and gone over the past 900 days, her mental fog has remained constant.

Primary care specialist Emma Ladds from the University of Oxford informed me that brain fog is “by far one of the most devastating and destructive” symptoms of chronic COVID. It’s also one of the least well-understood. When the initial coronavirus pandemic started, this symptom wasn’t even considered to be a possibility. However, 65%-88% of those who remain ill for an extended period of time report experiencing mental cloudiness three months after their initial infection.

People who have never been seriously ill enough to require a ventilator or medical care at all are not immune to the disease. The disease can strike even at the peak of a person’s cognitive development in adolescence or early adulthood.

Drivers who have experienced brain fog for extended periods of time say it’s nothing like the things that others, including many doctors, mockingly equate it to. It goes deeper than the foggy brain that comes with hangovers, stress, or exhaustion.

Davis feels it is different and worse than her experience with ADHD. It’s not in your head; it causes true physical and chemical changes in your brain. No mood disorders are involved: “If somebody is arguing that this is related to despair and anxiety, they have no basis for that, and facts suggest it might be the other direction,” neurologist Joanna Hellmuth from UC San Francisco told me.

Also, despite its vague name, brain fog is not a catchall for all forms of mental distress. Focusing, remembering, and filtering out distractions are all components of “executive function,” which is impaired in the vast majority of cases, according to Hellmuth.

When a person loses these abilities, it is like watching the basis of their mind disintegrate. Things that need focus, organization, or forethought become impossibly difficult to accomplish. “It lifts what are unconscious processes for healthy people to the level of conscious decision making,” Fiona Robertson, a writer living in Aberdeen, Scotland, explained to me.

Robertson, for one, suffers from what she facetiously dubs “so-yeah syndrome,” in which she “forgets what I’m saying, tails off, and goes, ‘So, yeah…'” Kristen Tjaden couldn’t drive since she often got lost due to brain fog and couldn’t remember where she was going.

Because it had been too difficult to make sense of a string of words, she had been unable to read for over a year. It took Angela Meriquez Vázquez two hours, she said, to arrange a meeting with me over email once. She would look at her schedule, but the news would be lost in the time it took to open her inbox. At her most impaired, she was unable to unload a dishwasher because the process of locating an item, recalling its proper location, and placing it there was too time-consuming and difficult.

Degenerative diseases like Alzheimer’s also have an adverse effect on memory, albeit in a different way. The memories are present, but a dysfunctional executive system prevents the brain from prioritizing what to store or how to access it.

Davis, a member of the Patient-Led Research Collaborative, has a good memory for information found in scientific studies but not for personal experiences. Her memories of her family and her previous existence are vague and far away. Moments that affected me don’t feel like they’re a part of me anymore,” she added. A person may say, “I feel like a void, and like I am a void.”

The symptoms of brain fog usually aren’t too severe, and most people feel better over time. But even after becoming better enough to go back to work, people’s minds may not be as sharp as they once were. “We’re used to driving a sports car, and now we are left with a jalopy,” Vázquez complained.

There are industries where driving around in an old beater just isn’t acceptable. Monica Verduzco-Gutierrez, a rehabilitation expert at UT Health San Antonio, told me, “I’ve seen surgeons who can’t go back to surgery because they require their executive function.”

Robertson, meanwhile, was a college student majoring in theoretical physics when she fell ill, and her illness obscured a once-clear path to success. She reminisced, “I used to glitter like I could pull these things together and start to grasp how the universe worked.”

It’s a daily ache that I can never get over the fact that I can never feel that way again. This identity crisis was just as upsetting as the physical symptoms of Robertson’s illness, which he had previously believed he could manage “if I could just think properly.” This has been the single most disorienting factor in my life.

Robertson hypothesized that a wave of cognitive impairment will be brought on by the pandemic in March of 2020. She had been experiencing mental fog for about two decades before being diagnosed with COVID last year, most likely due to a separate viral disease. She eventually developed the same executive-function abnormalities that long-haulers do.

Many persons with HIV, epileptics following seizures, cancer patients with so-called chemo brain, and people with several complicated chronic conditions like fibromyalgia also suffer from that cluster of symptoms. It’s used as a part of the diagnostic criteria for myalgic encephalomyelitis, often known as chronic fatigue syndrome (ME/CFS), which Davis and many other long-haulers now have.

Many people have suffered from brain fog for a long time, long before the emergence of COVID, but their conditions have been ignored, misunderstood, or even ostracised. Robertson explained to me, “For all those years, they basically disregarded it like it’s not worth researching.” Lots of us were told, “Oh, it’s just a bit of a depression.”

Brain fog, according to some doctors I spoke with, downplays the severity of the ailment and denies patients the respect due them by using more medicalized terms like cognitive impairment.

Disability historian Aparna Nair from the University of Oklahoma pointed out, however, that the phrase has been in use by the disabled community for decades, and that there are numerous more grounds beyond terminology for dismissing brain fog. (The severity of fibromyalgia and myalgic encephalomyelitis was minimized despite the abundance of syllables in their names.)

No matter where they wind up, patients have a hard time accepting how much they’ve changed and the stigma that comes with it. The cultural traditions of powering through difficulties and post-exertional malaise (in which all symptoms intensify after even mild physical or mental activity) make it riskier for them to try to get back to normal as quickly as possible.

Robertson told me that many long-haul drivers “push themselves into a wreck” when they try to force themselves back to work. For an entire year, she was confined to her house and required round-the-clock care because she tried to fight her way back to normalcy. Now, “I end up with a physical reaction of tiredness and pain like I’ve run a marathon,” she said if she tries to focus in the midst of a terrible day.

Given the prevalence of post-exercise malaise among long-haul drivers, Putrino argues that “exercise as a treatment is inappropriate for those with lengthy COVID.”

Because mental exertion is physical exertion, even brain-training activities, which have dubious effectiveness yet are commonly suggested as prospective remedies for brain fog, must be properly rationed. Those who suffer from ME/CFS learned this the hard way, and they pushed to have exercise therapy, which was formerly recommended for the condition, removed from official recommendations in the United States and the United Kingdom. In order to minimize mishaps, they have also learned the importance of pacing themselves.

Vogel monitors her energy levels with a wearable device that records her heart rate, sleep, exercise, and stress; if her energy levels drop too low, she gives herself a mental and physical respite. It’s not productive to waste time browsing social media or answering emails. There are times when “the best thing you can do is simply nothing,” as she put it, since “you have to recognize that you have this medical issue.” Sometimes you just have to stop moving when you’re in a fog.