“This isn’t a fog. This is life under an ice sheet. The term brain fog has everyone I meet expecting I’ll be better any day now.”
This is what one of us (Ken) wrote in his journal about the periodic memory loss and inability to concentrate that he experienced throughout 2022, when he struggled with symptoms of long COVID.
Long COVID is a neurological disease that happens after people are no longer infected with SARS-CoV-2. Its prevalence appears to be between 15 percent and 30 percent, according to numerous studies. About 46 percent of people who have it report some type of memory disruption. People associate the term “brain fog” with confusion, trouble concentrating, anxiety, forgetting and sometimes headaches. But the term has become a societal and medical catch-all for the vast and varied neurological, psychological and emotional aspects of long COVID. When someone feels hazy, tired and distracted, it’s called brain fog. Yet, when the fatigue remains and memory goes every 10 minutes, it’s also called brain fog. By calling all long COVID-related cognitive or psychological dysfunctions brain fog, it diminishes what people like Ken have experienced.
When the other of us (Emily) was sick, she would forget the occasional word or lose her focus, which are common in mild cases of long COVID. This lasted around a month. But for Ken, long COVID was more than a year of inconsistent but extreme memory loss, extreme fatigue and immunosuppression that led to several emergency department visits. Under the current understanding, we both had brain fog, even though our symptoms were radically different.
This idea that brain fog is “fuzziness” and not serious predates the pandemic and makes it harder for people who need short and long-term disability accommodations to get them. This was Ken’s experience, as two professors did not believe he had long COVID or needed accommodations to finish the academic year. All brain fog is not the same, and it’s time society creates different ways of explaining how people experience the cognitive symptoms of long COVID so that those with severe symptoms are taken more seriously and receive the physical, financial and workplace or academic support they need to recover.
As a medical anthropologist, Emily was interested in learning more about how people experience long COVID symptoms to disentangle them from how society perceives the condition. Ken’s experience was at the center of this project; he journaled for more than a year about his symptoms, including what we believe was severe brain fog. Ken interviewed 22 people living with long COVID to better understand how their experiences aligned with or diverged from his own.
We found people described brain fog differently from the mild forgetfulness that has become the popular definition.
A 44-year-old father described to Ken how becoming completely debilitated by long COVID transformed his everyday life. He said, “When I’m having a brain fog day, I have to ask my wife to bring me a stockpile of daily necessities in bed before she leaves for work. I can’t stand up, I can’t move, and I can’t function for hours, even days sometimes.” He described headaches and pain at five months after his initial infection and said that he felt worse having long COVID than COVID itself. Nineteen of the 22 people we interviewed struggled to complete routine tasks at some point during their illness.
Ken struggled for four months with coursework at Georgetown University as he only remembered things in 10-minute intervals. Fifteen people we spoke to described experiencing similar memory loss. They also described chronic nerve pain, severe headaches, and episodes of dizziness, nausea and fainting. This is alarming, because new research has shown that long COVID can result in neurological damage and neurocognitive dysfunction that may cause lifelong impairment.
Despite the specter of lifelong impairment, many of the people we interviewed said that people rarely took their symptoms seriously.
A 67-year-old woman with a history of epilepsy told Ken: “I feel like I’m living entire days and weeks of my life in that postictal epileptic haze. I’m drowsy and confused, usually with splitting migraines. But I’ve had to start telling people I’m having epileptic episodes when I’m struggling with brain fog because they believe epilepsy is real. Telling the truth and saying I’m dealing with brain fog is more work than it’s worth.”
We need to understand the different types of brain fog to help classify them for practical purposes, but also to legitimize these cognitive differences for the sake of accommodating people with long COVID. This is not easy to do because there is so much variability in this disease; the virus affects multiple parts of the body, and researchers and clinicians have identified hundreds of symptoms. Creating different classes of brain fog, then, requires us to lump together symptoms that could be severe, for example, but still variable from person to person.
Long COVID is a federally recognized disability. Yet, 16 of the 17 people who reported brain fog in our study described feeling disbelieved. Nine of the 13 people we interviewed who sought disability accommodations faced significant barriers to access. At Georgetown, Brittney Klein, who manages disability accommodations and worked with Ken to help him get through the spring and fall semesters in 2022, told us that the school’s academic resource center has had a number of long COVID accommodation requests. Ken is not an outlier, by any stretch.
In this project we found a gulf between clinicians’ perceptions of the severity of brain fog and the perceptions of the people who have it. So many people feel alone and dismissed—this is reinforced on message boards, blog posts and Twitter feeds. Categorization of the most severe symptoms is a way not only to legitimize people’s neurocognitive dysfunction but also to elevate their need for intervention. We plan to publish a more extensive analysis of our findings in a medical journal.
We still don’t know much about brain fog, and there are major gaps in how we think about long COVID. However, we know for certain that brain fog is real. And brain fog is multiple things.
More than one year after his long COVID diagnosis, Ken still experiences sporadic memory loss and difficulty processing information. He has come to accept his struggles with brain fog as a continuing part of daily life, even as his physical health has mostly returned to normal. He now wishes he had taken medical leave during the worst of his long COVID. Regardless, identifying the complexity and diversity of symptoms people manage with brain fog, and creating a better nomenclature around that diversity would provide a clearer path for legitimizing medical leave and accommodations, and in the end, hopefully, help people lead productive lives as they manage this new normal.
This is an opinion and analysis article, and the views expressed by the author or authors are not necessarily those of Scientific American.