I feel like screaming a lot these days. I’ve been following distancing/isolation guidelines for 217 days and counting, and it’s hard. Reading the news usually leads to doomscrolling on social media. Honestly, there are so many distressing and maddening things about America’s response to the Covid-19 pandemic that I think we are all entitled to a daily scream.
But this week, I want to scream because of an article in the New York Times. “How Brain Fog Plagues Covid Survivors” describes the suffering of five people with cognitive problems and Long Covid. Among them is a nurse who can’t remember what her patients have told her as soon as she leaves the exam room, and an attorney who can’t understand emails or recognize her own car.
I want to scream because this happened to me.
When I got sick twenty-six years ago, my ability to concentrate was immediately affected. I was an attorney at a large firm, and everything at work took me longer than it had before. A memo that I could have written in two hours now took me six or eight hours stretched over multiple days. I couldn’t maintain cognitive effort for more than a couple hours at a time, and my work during those few hours was nowhere near as good as before. I started forgetting things and had periods of confusion.
Early one morning, about three months after I got sick, I was sitting in a partner’s office discussing an assignment. He had asked me to identify the key documents out of a closet full of file boxes and summarize them for the client. I had turned in the memo the day before. Now we were reviewing the list, and he was telling me which documents he wanted to forward to the client.
I had no idea what he was talking about. He held the small stack in his hands–a stack that I had pulled together–and he was naming the documents he wanted to include. I didn’t recognize any of them. I didn’t know what to do, so I pretended that I understood. I wrote down everything he said, hoping I could figure it out in my office. When I got to my desk, I looked at my list and looked at the documents, and I thought, “I am going to commit malpractice.” I was terrified, and the incident convinced me to take a leave of absence from work. I was never well enough to go back.
Reading that article in the New York Times put me right back in that moment, sitting at my desk and knowing that something was terribly wrong with my brain. My story from twenty-six years ago could fit into that article, and the stories from the article sound like stories I have heard from people with ME for decades.
I want to scream because this is not news. It was completely predictable that a percentage of people with Covid-19 would remain sick because it is well-established that this happens after infections. It was completely predictable that cognitive problems would be a big component of Long Covid.
I want to scream because no one believed us. I told my doctors that I got lost while driving less than a mile from my house, and that I couldn’t think because my head was full of static. None of them bothered to order cognitive testing or send me to occupational therapy. People with ME have described these symptoms to doctors and families and co-workers and teachers and policy makers, and we have not been believed.
I want to scream because there has been very little research on cognitive dysfunction and brain fog in ME. I want to scream because the lack of research means there has been no help for us, and now there is no help for people with Long Covid. What causes these symptoms? Are there any treatments that can help? What are we supposed to do–sit quietly as our brains fail?
I want to scream at NIH. No, I want to grab NIH by the lapels and shake them. We told you. We warned you. You did not believe us, and now there are many thousands more sick and frightened people who you cannot help. We were the canaries, and no one listened. I want to scream.