“It’s not a fog. That’s life under an ice cap. The term brain fog everyone I meet expects me to get better any day.
This is what one of us (Ken) wrote in his journal about the periodic memory loss and inability to concentrate he suffered throughout 2022 as he battled the symptoms of a long COVID.
Long COVID is a neurological disease that occurs after people are no longer infected with SARS-CoV-2. It is prevalence appears be between 15 percent and 30 percent, according to numerous studies. About 46% of sufferers report some type of memory disturbance. People associate the term “brain fog” with confusion, difficulty concentrating, anxiety, forgetfulness and sometimes headaches. But the term has become a societal and medical issue tote for the vast and varied neurological, psychological and emotional aspects of the long COVID. When a person feels fuzzy, tired, and distracted, it’s called brain fog. However, when fatigue persists and memory disappears every 10 minutes, it is also called brain fog. By calling any long cognitive or psychological dysfunctions related to COVID brain fog, it diminishes what people like Ken have been through.
When the other of us (Emily) was sick, she would forget the occasional word or lose focus, which is common in mild cases of long COVID. It lasted about a month. But for Ken, the long COVID has been more than a year of inconsistent but extreme memory loss, extreme fatigue and immunosuppression that has led to multiple ER visits. According to current understanding, we both had brain fog, even though our symptoms were radically different.
This idea that brain fog is “fuzzy” and not serious predates the pandemic and makes it more difficult for people who need short- and long-term disability accommodation to obtain it. This was Ken’s experience, as two professors didn’t believe he had long COVID or needed accommodations to complete the academic year. Not All Brain Fogs Are The Same, And It’s Time For Society To Create Different Ways To Explain How People Live the cognitive symptoms of long COVID so that those with severe symptoms are taken more seriously and given the physical, financial, and professional or educational support they need to recover.
As a medical anthropologist, Emily was interested in learning more about how people experience long symptoms of COVID to disassociate them from how society views the disease. Ken’s experience was central to this project; he kept a diary for over a year of his symptoms, including what we believe to be severe brain fog. Ken interviewed 22 people living with long COVID to better understand how their experiences aligned or diverged from his.
We found that people described brain fog differently than mild forgetfulness which has become the popular definition.
A 44-year-old father described to Ken how becoming completely debilitated from long COVID transformed his daily life. He said: “When I have a brain fog day, I have to ask my wife to bring me a supply of essentials to bed before she leaves for work. I can’t get up, I can’t move, and I can’t function for hours, even days sometimes. He described headaches and pain five months after his initial infection and said he felt worse with long COVID than COVID itself. Nineteen of the 22 people we interviewed had difficulty performing routine tasks at some point during their illness.
Ken struggled for four months with classes at Georgetown University as he only remembered things at 10 minute intervals. Fifteen people we spoke to described similar memory loss. They also described chronic nerve pain, severe headaches, and episodes of dizziness, nausea, and fainting. This is alarming, as new research has shown that long COVID can lead to neurological damage and neurocognitive dysfunction that can lead to lifelong impairment.
Despite the specter of permanent impairment, many people we interviewed said people rarely take their symptoms seriously.
A 67-year-old woman with a history of epilepsy told Ken, “I feel like I’m living whole days and weeks of my life in this postictal epileptic fog. I’m sleepy and confused, usually with split migraines. But I had to start telling people I had epileptic episodes while I was battling brain fog because they thought epilepsy was 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 in the interest of accommodating people with long COVID. It’s 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 therefore forces us to group together symptoms that could be severe, for example, but still vary 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 feelings of disbelief. Nine of the 13 people we interviewed who were looking for disability accommodations faced significant barriers to access. In 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 the school’s academic resource center received a number of lengthy COVID accommodation requests. Ken is not an outlier, far from it.
In this project, we found a chasm between clinicians’ perceptions of the severity of brain fog and the perceptions of people who suffer from it. So many people feel alone and rejected – this is reinforced on message boards, blog posts and Twitter feeds. Categorizing the most severe symptoms is a way not only to legitimize people’s neurocognitive dysfunction, but also to increase their need for intervention. We plan to publish a more in-depth 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 sure that brain fog is real. And brain fog is multiple.
More than a year after his lengthy COVID diagnosis, Ken is still experiencing sporadic memory loss and difficulty processing information. He has come to accept his struggles with brain fog as an ongoing part of daily life, even though his physical health has returned to normal. He now wishes he had taken sick leave during the worst of his long COVID. Either way, identifying the complexity and diversity of symptoms that people manage with brain fog and creating better nomenclature around that diversity would provide a clearer pathway to legitimize medical leave and accommodations, and ultimately, hopefully, would help people lead productive lives as they navigate this new normal.
This is an opinion and analytical article, and the opinions expressed by the author or authors are not necessarily those of American scientist.