According to the CDC, 1 in 13 adults in the U.S. (7.5%) have “long COVID” symptoms, defined as symptoms lasting three or more months after first contracting the virus and that they didn’t have before their COVID-19 infection. In addition, the Brookings Institute estimated that 1.6 million full-time equivalent workers could be out of work due to long-COVID. So, though I have not discussed long-COVID in detail, count me as just another traveler on COVID’s road.
My symptoms are relatively standard: Difficulty thinking or concentrating (sometimes referred to as “brain fog”), some insomnia, dizziness when standing up (lightheadedness), lack of smell or taste, and waves of fatigue. Yet, I worked through them all. And though some days were better than other days, I made it through each day without causing undue injury to either myself, a patient, or a clinician.
Don’t get me wrong; I am not macho. But, wishing I could cash out on disability and watch The Weather Channel, I felt an obligation that since I awoke, I should try to do something productive. (I am nearly 63 and two years from retirement, so I did not want to give management the excuse to lay me off.) So, like many uncounted long-COVID sufferers, I worked through affliction.
Let me say this, long-COVID is bitch. And September was the worst month. Between long-COVID symptoms and Ménière’s disease, there were several days when I wished I could have died. Brain fog and nausea combined with having a devastating one-two punch. I barely remember half of September and deferred many regular duties to other staff so patient care would not be impacted. A mind, once vivid, feels frayed and fleeting. Former mundanities—buying food, making meals, cleaning up—can be agonizingly difficult. Add Ménière’s, and it felt like God was spitting in my face. It is not psychosomatic. COVID brain fog involves fundamental changes to the brain structure. Until October 4th, the mental ability to focus attention, mentally hold information, and blocking out distractions was impaired.
Yet October 4th, something significant changed. I awoke that Tuesday morning expecting the usual mundaneness only to find clarity. Instead, my head was unusually connected, as though it had somehow rewired itself. I was able to calculate, hold a conversation and retain the information. I did not have to read emails or industry white papers repetitively. Almost five months post-COVID, the brain reengaged. What’s scary is that I don’t know why and am uneasy about the future.
Researchers reported in a study published in the Lancet Psychiatry that up to two years after Covid-19 infection, the risk of developing conditions such as psychosis, dementia, brain fog, and seizures remains higher than in other diseases. Relapse is always present.
I know surgeons who can’t go back to surgery because they have no executive function—some experienced brief moments of clarity, then relapse. One whispered to me, “I lost my identity. I no longer know who I am.” Unfortunately, that specific constellation of problems also befalls many of those living with HIV, epilepsy (post-seizure), cancer patients experiencing chemobrain, and complex chronic illnesses such as fibromyalgia and chronic fatigue syndrome. Let me tell you, it sucks.
One problem is the term brain fog itself. The term makes brain fog sounds like a temporary inconvenience. People often blame patients instead of looking for answers. “You look good” or “You appear fine’ are just a sample of statements I’ve seen others endure. Long-COVID sufferers’ fear of stigmatization motivates them to present themselves as ‘normal’ in social situations. This fear compounds the false sense that they’re less impaired than they claim—and can be debilitatingly draining. The severity can change from hour to hour. And there aren’t any medications or treatments that will correct it. The only hope is time.
Clinical experts say most long-COVID symptoms will dissipate between six and twelve months. Trust me; there are days when I wish I could rip an ear for the tinnitus I am experiencing. I do think about a nice unseasoned six-ounce steak. I am dying to feel the taste of cooked Italian sausage in tomato sauce, but I can’t taste anything. Thus, I am stuck in a perpetual, never-ending wait-and-see mode, hoping that one day, the rest of my body will feel like my now-clear brain.