I Want To Scream

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.

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37 Responses to I Want To Scream

  1. Lisa Zaret says:

    Thanks for putting into words what most of us are probably feeling!
    Please do not watch the questioning of the supreme court’s new (maybe) nominee! All I keep hearing is about losing my insurance! It is so scary! Take good care!

  2. Anne says:

    Thank you for this post. This is exactly the way I have been feeling. Exactly. I too am a lawyer. Getting ME/CFS much further along in my career- trying to manage after a long illness still not well- with doctors telling me “some people just can’t do that kind of work”. Well, I wasn’t “some people”. I was me. And why could I suddenly no longer “do that kind of work”. Other doctors told me it was depression or anxiety because I must have been overdoing it for years. I should push myself to “get over it”. So I did. And so I got much worse. My empathy goes out to COVID long haulers. I’m glad they (at least for now) seem to be being believed. I hope, for all of us, major research attention is paid to our post-viral illnesses.

  3. Pat Radcliff says:

    Thanks, Jennie, again for putting into words what so many of us have been
    Thinking for a long, long time.
    Peace

  4. My experience was the same as yours, except it was research physics at Princeton, not law.

    Before that moment, I could keep cross-connections among 200 subroutines in my head. After, the one would fall out before I could load the next. I couldn’t stay awake in meetings. I wasn’t even safe driving to work. Short term disability did nothing – and I had to abandon my dream job.

    And now the newbies are so needy – and the medical establishment has NOTHING to offer them. They could have been ready.

  5. Pat S says:

    We all want to scream with you, Jennie. Indeed, we have been collectively screaming for decades already, to little avail. The new numbers of additional post covid patients joining the cognitive brain drain will be astounding. Surely someone, somewhere, will somehow recognize the urgency and find some answers by studying the post covid patients.

    Many of us seem to be experiencing a more rapid decline in cognitive brain function and general mental health over the last six months. The general population, even those who do not have underlying physical or mental health issues, seem to be experiencing the same things. We have all been exposed to covid and political fatigue possibly causing a form of PTSD. We shouldn’t panic about this decline, at least not yet. Hopefully, we’ll see some improvement after the political circus is over and civility restored and when a standard treatment and possible vaccine are developed for covid. In the meantime, offer encouragement at every opportunity. I always appreciate yours, Jennie.

  6. Anonymous says:

    As others have said, this is (sadly) so familiar!
    The abject failure to heed the canaries (PwME) and now the failure to meaningfully help those with long-COVID are morally reprehensible and very damaging to society!

    HUGS to you!

  7. KATHLEEN A HOUSTON says:

    I’m six years into having ME/CFS. After seeing all kinds of specialists and having all kinds of tests I was “lucky” enough to get my diagnosis after 18 months. An Infectious Disease doctor walked into the exam room and said, “I’ve reviewed your file. You have CFS and you don’t need to come back because we can’t help you.” I’ve felt lost and invisible since then. I am hoping that Dr. Fauci and others publicizing that COVID brain fog is much like ME/CFS brain fog will finally get someone to pay attention to us. I am so sorry to hear that you have been dealing with this disease for so many years.

  8. Lynn P. says:

    I’m screaming with you, Jennie.

    I also get what I call body fog, where I can’t even get out of bed. Not because of pain, but because I have no energy of any kind. It’s different than my “normal” PEM, so maybe it’s extreme PEM.

    Do you think we’ll finally get some answers because of the focus and research into long-COVID?

    Sending gentle hugs.

    Lynn

    • Jennie Spotila says:

      I sincerely hope so. Right now the focus is on vaccines and treatments, and not so much basic science. I think it will take some time before we see an increased investment in Long Covid research, and longer to see anything that applies to us.

  9. Tina S. says:

    Could not agree more!

  10. Janet Dafoe says:

    Your writing is so compelling, Jennie! I want to scream! It seems to me that the Abilify is helping this symptom in Whitney so that he can write those fb posts. It all just makes me so sad. Hearing about peoples lives and how they have been totally messed up. Thank you for your beautiful writing.

  11. Kirsti S says:

    I am also screaming with you, Jennie.

    I got much much worse after being tested. Deep concentration is toxic. Be aware.

    Thank you, thank you, thank you for your words.

    All these comments.. wish someone will listen.. they have to if we scream loud enough together

  12. Amy says:

    I hear your screams and I echo them.

    I was a visiting assistant professor with a brand new PhD when my brain stopped working. For three years in grad school I wrote 3-4 essays a semester for courses, none of which took me more than a few days; then I researched and wrote a 250 pp dissertation that my advisor said was one of the best he’d ever read in 18 months.

    Six months after I graduated, following a virus, I literally could neither write nor could I give a coherent lecture. I withdrew from the application process for a permanent position at the university where I was visiting (and where I’d been assured that virtually all the faculty in my department supported hiring me) because I couldn’t put my thoughts together to deliver a “job talk” – a lecture about the research I’d been doing for the past 3 years.

    That was in 2004. No one took me seriously, not my psychiatrist, not my therapist, not my internist, not my second psychiatrist; my second therapist took me seriously and couldn’t offer me any help.

    I’ve had one job for 9 months since 2004. I tried working freelance & I could never count on my brain on any given day so I don’t even do volunteer work that requires mental concentration.

    Maybe as a result of Covid-19, there will finally be research. Think of all our productive lives lost. I know, I could have been just as miserable in an academic career as many of the people all of us know are, and at least I wanted to give it a try. I’ve adjusted to a different life & I’m not miserable now & haven’t been for years, & I do miss having a functional brain.

    • Jennie Spotila says:

      Oh Amy, I feel your loss. I know what it’s like to have worked so hard for a career and then lose it.

    • Bob says:

      I know it’s not much of a consolation, but at least you finished your PhD. I got ill before I’d written mine up. That was twenty years ago, and I’ve not been able to work since. I’ve not adjusted to it – not having a functioning brain is misery.

  13. Barbara McMullen says:

    I also get so tired of doctors, etc. acting as if this is so unusual and mysterious when this happens after every viral illness. I even remember reading, in the 1970’s, that something similar happened after the Spanish flu. The knowledge has been around for a long time.

  14. Melinda Lipscomb says:

    This is me, 10 years ago with H1N1. I’m screaming with you.

  15. Jo katsiaris says:

    I am screaming with you and have been screaming for the past 20 years.
    My story is similar to yours. I was also a lawyer in a top tier Law firm, a couple of years out of university. My whole life ahead of me – full of ambition, dreams and aspirations. ME/CFS destroyed my life and continues to define it on a daily basis.
    Let’s hope that now, finally, the world will sit up and take notice!

  16. Rivka says:

    Yup, yup, yup. I was a cross-cultural conflict resolution trainer. In front of a roomful of workshop participants. Suddenly, mid-sentence, I had no idea why I was there, who I was talking to and what I was talking about. Got lost driving home from work, even tho I made the same trek 5 days a week. Terrifying. And that same brain fog has gripped me for 3 decades now.

    • Jennie Spotila says:

      Wow Rivka, that must have been so awful for you. I still have that sudden brainlock, but at least I know what it is now. At the beginning, it is absolutely terrifying.

  17. patricia fero says:

    I remember the exact moment when I knew that I could not go on teaching. I was making an announcement before the bell. The teens looked, really looked oddly at me. My at-risk kids were all chancy and risky and goofy, but the room was silent. My colleague nudged me. He had finished saying the same thing not minutes before.

    A person cannot go on being incompetent with other people’s kids. I would stand in front of a classroom and stare. It was bad. I lost my ability to write on a chalkboard. I could not form letters or make sentences. I only started to scream when I was denied d disability because an independent consultant thought I was looking for secondary gain. It was a 7-page letter and a long day of screaming that caused me to feel horrid. SO we cannot be too angry or too sad or upset because it makes the symptoms worse. NO luxuries allowed for these emotions. Go stare at the wall and he happy.

  18. Jill says:

    Oh yeah I’ve been screaming this whole time, inside my head/heart. Screaming, emailing my primary doctor with URGENT WATCH FOR POST VIRAL SYNDROMES stuff, but hey, I’m a layperson, wtf do I know?

    Thank you for writing it so eloquently,
    Peace and calm to you and all
    ME/CFS/Epstein-Barre/POTS/ and more alphabet soup for the anguished. – since 1983 or 1991
    Jill in CA

  19. Colleen Nuzzo says:

    Thanks for the post. I had the measles when I was 30 and developed encephalitis and pneumonia. I had 106 fever. It took years to be able to function enough to go back to college, although I was never able to finish my degree. I too had a job that required attention to detail.
    I was a top notch, in demand mortgage underwriter and loan auditor. My specialty was taking poorly packaged loans( not bad loans,) and making them salable or weeding out bad originators with fraudulent documentation. Some of those people went to jail.
    After the brain damage I tried to go back to my work. I could recognize the papers, but didn’t know what the information meant, let alone see the big picture to make any sense out of whether it was a good loan or not.
    I eventually was able to work here and there in related fields but not at the same capacity. My body started turning on me and I eventually had to stop working. I was no longer able to keep a status quo with cognitive functioning and I am mourning the decline. I may or may not have ME. I have been diagnosed with “severe fibromyalgia “ although I don’t have the trigger points. But I have serious muskoskeletal degeneration and brain fog. I have difficulty doing the Monday Times crossword, when I could do Sunday in ink.
    I just forgot most of what I was responding to, so I’ll stop now.

  20. JT says:

    You may already know this, but if you’re up to viewing (and maybe critiquing or giving your insights), there’s a webinar titled, “Webinar on Scientific Research on ME/CFS in the Age of COVID-19” Oct 26th at 6pm-7pm EST. Drs. Maureen Hanson, W. Ian Lipkin, Avi Nath. It’s hosted by NY state dept of health…info published on Jackson Lab’s Advances in ME/CFS blog.

    Per Whitney Dafoe, Dr. Ron Davis is onto something that seems pretty hopeful or exciting…yet to be published. Looking forward to that. And maybe peptide therapy. And Abilify…significant anecdotal benefits…though wondering if patients eill over-do and crash on it. But anyway, I am SO with you. I’ve now been sick over half my life, at 28 yrs old. I felt like a ghost in my home that first year esp when I couldn’t be a 14 y.o…I’d picture how I’d normally be hurriedly getting ready in the AM…in the same bathroom I was then sitting on a closed toilet lid trying to summon the energy and strength to stand long enough to brush my teeth and wash my face…or then, take the every 5 days to weekly shower and rest much til the next so I could bathe in another 5-7 days. And I can’t tell you how many times I’ve been sicker in appearance (if crashed or palor pretty regularly) and had more limitations than people much older than I in a doc’s office, yet I felt like a misunderstood alien…and had to delicately educate the doctor w/out threatening their ego. Well, in the beginning it was actually just seeking answers and trying to provide them clues so they could hopefully help me…my parents didn’t know if I was going to live or die. They didn’t want to say it, but who is THAT weak or ill or bedbound largely for months and not like…very ill w/ cancer or something? This isn’t just fatigue. It’s freaking insanity that sane, productive, often previously high energy, high achieving people…weren’t taken seriously for decades. And at times had some horrific, belittling, abusive Drs appts (or ones where out of misinformation or ignorance they told you to exercise to help your ME/CFS immune-mediated body pain or walk an hr a day to help ME/CFS and POTS related GI dysmotility) b/c bias and disbelief that what we experience is REAL. Now there’s undeniable evidence, however its taking time for docs to hear and read it. I think POTS being a common comorbidity has harmed our being taken seriously (it wouldn’t if docs educated on whole illness picture!) b/c often that causes an appearance of anxiety…when heart racing, your adrenaline goes up, breathy when talk, perhaps shaky or nervous seeming…a normal reaction to feeling like your heart is pumping for a marathon whilst sitting!

    And believe individual patients have it. I also can say that docs don’t want to diagnose it b/c can’t help it (so can’t be the savior and/or afraid patient will be furious maybe?)…so leave you aimlessly searching for answers…years later I found it was written that CFS was suspected mos and mos before I was diagnosed. This was at 14. I found it in old rheumatologist notes at 22 y.o. after a total relapse and playing Dr. House out of desperation…when barely up to reading much and taking breaks. I wasn’t educated on ME/CFS or relapses initially. I knew I was chronically tired but not why or what “CFS” entails. I was then told “Fibromyalgia-like” at Stanford pediatrics when about 20% improved from acute illness part. Was warned sometimes relapses happen but wasn’t even fully diagnosed w/ Fibro and pain wasnt as big a thing then so didn’t know what they even knew…but I now know my doc vaguely understood me and CFS. She now has done work in collab w/ Stanford’s CFS Research Center. But I wasn’t told about…what if don’t get better…was told “many do by the 2 yr mark” by Sansum Clinic Infectious Disease doc who finally diagnosed me…and to do PT and walk as I could.

    I have a cardiologist who didn’t want to accept I’m chronically ill (in a debilitating way) for yrs after relapse…this harms documentation and social security cases. Why he didn’t want to admit this to himself or accept it?…b/c he has twin daughters slightly younger than me. B/c he sees so much potential in me and intellect. B/c of the sentiment that I just “can’t” be sick forever.” My life can’t go to somewhat waste w/ out contributing to society. Well, it is w/ ignorance, lack of education of docs, lack of research dollars, and lack the NIH giving enough of a dam*.

    Its been about 15 yrs and I have more hope now than a few yrs ago…but now many many more have a similar fate of who knows how long til help. Endless unknown of their future.

    A yr or 2 into COVID, Lenny Jason PhD needs to do another direct and indirect costs of ME/CFS research paper…I’m sure they will have gone up significantly.

  21. Nancy says:

    I was an Assistive Technology Assessor/provider for LAUSD schools. I was generally able to learn new software and hardware, disseminate the information to other teachers and put it into use with students with relative ease. I remember sitting in a training for a new device and being unable to understand anything that was being said. It was as though I was underwater physically and mentally. Driving became more difficult which was terrifying because I worked all over the district. Emotionally, I refused to recognize that there really was an issue because it came and went. I’d have days or weeks that were bad and then feel OK for a few weeks. Deep down inside, I knew what was going on as my sister had been diagnosed with Epstein Barr then CFS years before.
    Thank you Jennie for expressing the rage and sadness that comes with this disease let alone with disbelief and disdain that we are often met with. I am grateful that you so eloquently fight for us all.

  22. I’ve read your piece and the comments, Jennie. Thank you for putting into words why we all want to scream. I had to give up a dream career due to ME. I was dismissed by doctor after doctor with comments such as “Just drink coffee.” After almost 20 years of illness, that comment still crystalizes for me how all of us have been disregarded by the medical community and how, had that not happened, there might be help today for Covid-19 long haulers. A friend of mine has a friend in her 30s who got Covid-19 in April and is now a classic ME case. It’s a tragedy for us…and for them.

  23. Anne says:

    Jennie,
    You are getting so many comments because there are so many of us out there, mainly alone, who are having to grapple with the illness of long haulers, mourn for them but also wonder why no one respected us during our years of illness. While we mourn for them and for ourselves that medicine isn’t ready for their illness. Watching long haulers has made me realize I have been masking my brain fog for years- pretending I remember events I have forgotten, pretending I remember people I have forgotten, pretending like my brain is more focused than it is. I wonder how many of us feel this moment is one of retrospection beneath the scream.

    • Jennie Spotila says:

      Your comment about masking your brain fog (even from yourself sometimes?) is so key. I have done that too! There are so many reasons why, and it could be an entire post.

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