I've been living with long covid for 2.5 years, and this is such a great summary of the experience. I've improved slowly over the past 6 months, but I'm still not where I was, and of course the fear of a new infection has changed my life forever. I wish I could send this piece to everyone I know, but I probably won't send it to any of them: the minimizers I've had to completely cut out, and the people left l don't want to lose entirely. They have heard me say it all before, and tolerate me although they seem to believe that they themselves are immune. Mostly I spend my time alone or with online professional communities through zoom where the subject of masking never comes up, and where no one mentions when I'm sometimes in bed rather at my desk, and always in my house. Thank you for putting the surreal experience of long covid into words so beautifully.
thank you so much for writing - i’m glad the piece resonated. The loss of community is so difficult. virtual community is a pale sub for IRL, but better than nothing at all, and all this makes me want to think about how to facilitate more social community spaces for people struggling with the isolation of chronic illness
I adore you and your writing. Maybe someday when we both have energy we can talk about sars2 disease. I refuse to call it “long covid”. Covid was a name made up to minimize the threat of sarscov2. SEVERE acute respiratory syndrome coronavirus 2. The people who got sarscov1 never recovered. Never worked again. But the world decided to let everyone get sarscov2. And “long” makes sars2 disease sound like it’s the sick person’s fault for having covid “too long.”
As I type this, Americans are dying directly from sarscov2. Or, they are dying from a disease caused by sarscov2, (cancer, cardiac arrest, sepsis, stroke, etc) or they are dying from something that is usually not deadly, but since their immune system is damaged from sarscov2, they can’t fight the germs.
Cassandra’s like me, some virologists, immunologists, etc, knew that sarscov2 was deadly and masks were a great way to limit deaths. The countries that dealt with the first bird flu and sars knew that masks worked- Japan, China, South Korea, Singapore, Vietnam, etc. Vietnam put people who broke quarantine in jail!
When America didn’t care about the hundreds of thousands of covid orphans, or the children who died from covid, I was devastated. I thought that at least we would care about the children. But Americans are narcissists with tiny egos. We will kill ourselves and our children to protect our egos.
Jessica Wildfire wrote an excellent essay about American thinking on collapse:
Anyway, I started speech therapy this week. And I now fully realize the depths of my sars2 brain damage. I couldn’t work cause I couldn’t remember what people told me. And guess what, I cannot remember the details in a paragraph. That’s why I can’t read a book. Or, work. And why my sister sometimes does not understand me on the phone…
Anyway- brigham healthcare estimates that 25% of their patients have sars2 disease symptoms. And based on so many people complaining about illnesses, 25% sounds right. And that doesn’t include the increases in deadly diseases, like lung cancer in young people.
I am rambling now…
Take care and push for therapy- speech, occupational therapy, neurological therapy…
Your comments on sarscov1 are very eye-opening for me. Shamefully, it hadn’t occurred to me to consider the population suffering from post-viral illnesses caused by sarscov1 —- and how much farther we’d be now in terms of knowledge and treatments if we recognized and began studying it then. I’d love to read more about post-viral illness and sarscov1 if you have any literature to recommend - though i fear there’s a dearth of it, for obvious reasons. Will check out the Jessica Wildfire essay! Glad to hear the speech therapy is proving helpful for you.
I get that the world has moved on and will not mask to protect me. I have a transplant and a suppressed immune system. I still mask on planes, when I venture into a crowd. I do think that courtesy to leave me alone if I am wearing a mask is not unreasonable but I get snarky comments “living in fear” “ libtard” and “snowflake” among them. Just going out can require a lot of courage these days
As always you are right on the money. I’m so sorry that you and my friend Lisa are experiencing these awful symptoms. Perhaps not the right word but don’t know what else to call all the long Covid hideousness. I did send her a subscription so she could keep up with your articles. And if you think you can manage it I’m still curious if you read and have a response to Yellowface. Take good care and thanks for sharing as openly and eloquently as you do.
I thought Yellowface was a fun read! Have you read Erasure or seen American Fiction? Highly recommmend in the “biting takes on the publishing industry” genre
Interestingly, I believe you still haven't written anywhere on your blog that you have ME/CFS. Maybe I'm wrong and I've missed it?
"Which...doesn't that mean they have ME/CFS? Maybe because because Long Covid people don't want to be bundled into a grouping with such a bleak prognosis."
"To have ME/CFS means you are always running on low battery mode"
Who is "they" and who is "you?" Your word choice seems like an effort to create distance.
It is my goal to be kind with these words. I have ME/CFS myself and know the pain of only halfway accepting it. I see my experience in your words. I hope you continue to write, and continue to process your world.
I’m fully cognizant of the implications of my pronoun choice - it reflects the ambiguities of these illnesses, and the battle of semantics being waged regarding them. No doctor has diagnosed me with ME/CFS. The closest I’ve gotten is being told that I “meet the diagnostic criteria” — so this is me grappling on the page (er, screen) with my uncertainty about how to receive and react to that, and the broader implications of such blurry line-drawing….which seems a function of just how little we know about the mechanisms of these diseases. My goal as a writer is to highlight as opposed to obscure the messy muddle of life, which involves a non-linear journey of learning and understanding.
I have said out loud, or at least thought, almost every word in the How Bad Is It? section.
"Even I have trouble wrapping my head around it-and I'm living it" is practically my mantra.
After 4 and 1/2 years, I am finally getting a little better, and I gauge my progress by reminding myself that, while I am still very limited, I can do things that I couldn't do a year ago. And then I think "I can't believe I couldn't shake a bottle of salad dressing and take two steps at the same time"-and if I can't believe it after living that way for four years, how can I expect others to imagine it?
I never engaged with social media before I got sick, but I am so indebted to it, and people like you. It helped me give words to my physical symptoms and, more importantly, kept reminding me that I was still part of a community (even if it is inhabited by people most of whom I will never meet).
I know there are still no definitive answers, and every case is different, so I am not making any recommendations or promises, but just to add to the knowledge base: I began to have improvement for the first time when I started seeing an acupuncturist/Eastern medicine practitioner, and I have markedly improved since I started taking LDN about three months ago.
I’m so glad - and sorry - that the How Bad is It sectjon resonated, and glad that youre enjoying the little wins! I haven’t tried acupuncture yet - are there other forms of Eastern Medicine you’ve found useful. Glad to hear LDN is helping you! I tried it for four months and didn’t notice any improvement, but I know it’s helpful for many!
Isabel, I have long Covid. It also triggered an autoimmune disease which I now have to battle. Your article explains long covid exactly. It’s a terrible disease that is misunderstood. I get that it’s new and those of us who suffer with it are the Guinea pigs of it’s recovery. Covid was made political and it brought out an ugly side of human nature. I so desperately want the recovery of this issue to be bipartisan. Your article was great… until your last paragraph. Sadly, you made it political again. I was hoping you would use your public platform to unite us “long haulers “and unite for recognition but I guess that’s not your agenda. Now I know.
I've been living with long covid for 2.5 years, and this is such a great summary of the experience. I've improved slowly over the past 6 months, but I'm still not where I was, and of course the fear of a new infection has changed my life forever. I wish I could send this piece to everyone I know, but I probably won't send it to any of them: the minimizers I've had to completely cut out, and the people left l don't want to lose entirely. They have heard me say it all before, and tolerate me although they seem to believe that they themselves are immune. Mostly I spend my time alone or with online professional communities through zoom where the subject of masking never comes up, and where no one mentions when I'm sometimes in bed rather at my desk, and always in my house. Thank you for putting the surreal experience of long covid into words so beautifully.
thank you so much for writing - i’m glad the piece resonated. The loss of community is so difficult. virtual community is a pale sub for IRL, but better than nothing at all, and all this makes me want to think about how to facilitate more social community spaces for people struggling with the isolation of chronic illness
All of this!!
Hello my dear—
I adore you and your writing. Maybe someday when we both have energy we can talk about sars2 disease. I refuse to call it “long covid”. Covid was a name made up to minimize the threat of sarscov2. SEVERE acute respiratory syndrome coronavirus 2. The people who got sarscov1 never recovered. Never worked again. But the world decided to let everyone get sarscov2. And “long” makes sars2 disease sound like it’s the sick person’s fault for having covid “too long.”
As I type this, Americans are dying directly from sarscov2. Or, they are dying from a disease caused by sarscov2, (cancer, cardiac arrest, sepsis, stroke, etc) or they are dying from something that is usually not deadly, but since their immune system is damaged from sarscov2, they can’t fight the germs.
Cassandra’s like me, some virologists, immunologists, etc, knew that sarscov2 was deadly and masks were a great way to limit deaths. The countries that dealt with the first bird flu and sars knew that masks worked- Japan, China, South Korea, Singapore, Vietnam, etc. Vietnam put people who broke quarantine in jail!
When America didn’t care about the hundreds of thousands of covid orphans, or the children who died from covid, I was devastated. I thought that at least we would care about the children. But Americans are narcissists with tiny egos. We will kill ourselves and our children to protect our egos.
Jessica Wildfire wrote an excellent essay about American thinking on collapse:
https://open.substack.com/pub/sentinelintelligence/p/the-psychology-of-collapse-a-deep?r=7v3ed&utm_medium=ios
Anyway, I started speech therapy this week. And I now fully realize the depths of my sars2 brain damage. I couldn’t work cause I couldn’t remember what people told me. And guess what, I cannot remember the details in a paragraph. That’s why I can’t read a book. Or, work. And why my sister sometimes does not understand me on the phone…
Anyway- brigham healthcare estimates that 25% of their patients have sars2 disease symptoms. And based on so many people complaining about illnesses, 25% sounds right. And that doesn’t include the increases in deadly diseases, like lung cancer in young people.
I am rambling now…
Take care and push for therapy- speech, occupational therapy, neurological therapy…
Your comments on sarscov1 are very eye-opening for me. Shamefully, it hadn’t occurred to me to consider the population suffering from post-viral illnesses caused by sarscov1 —- and how much farther we’d be now in terms of knowledge and treatments if we recognized and began studying it then. I’d love to read more about post-viral illness and sarscov1 if you have any literature to recommend - though i fear there’s a dearth of it, for obvious reasons. Will check out the Jessica Wildfire essay! Glad to hear the speech therapy is proving helpful for you.
I get that the world has moved on and will not mask to protect me. I have a transplant and a suppressed immune system. I still mask on planes, when I venture into a crowd. I do think that courtesy to leave me alone if I am wearing a mask is not unreasonable but I get snarky comments “living in fear” “ libtard” and “snowflake” among them. Just going out can require a lot of courage these days
i am so sorry you’re facing comments like that. ignorance is cruel bliss. people hate reminders of their own mortality.
As always you are right on the money. I’m so sorry that you and my friend Lisa are experiencing these awful symptoms. Perhaps not the right word but don’t know what else to call all the long Covid hideousness. I did send her a subscription so she could keep up with your articles. And if you think you can manage it I’m still curious if you read and have a response to Yellowface. Take good care and thanks for sharing as openly and eloquently as you do.
I thought Yellowface was a fun read! Have you read Erasure or seen American Fiction? Highly recommmend in the “biting takes on the publishing industry” genre
Yes to both!
You provide valuable information, Izzy. I appreciate it - and you.
Interestingly, I believe you still haven't written anywhere on your blog that you have ME/CFS. Maybe I'm wrong and I've missed it?
"Which...doesn't that mean they have ME/CFS? Maybe because because Long Covid people don't want to be bundled into a grouping with such a bleak prognosis."
"To have ME/CFS means you are always running on low battery mode"
Who is "they" and who is "you?" Your word choice seems like an effort to create distance.
It is my goal to be kind with these words. I have ME/CFS myself and know the pain of only halfway accepting it. I see my experience in your words. I hope you continue to write, and continue to process your world.
I’m fully cognizant of the implications of my pronoun choice - it reflects the ambiguities of these illnesses, and the battle of semantics being waged regarding them. No doctor has diagnosed me with ME/CFS. The closest I’ve gotten is being told that I “meet the diagnostic criteria” — so this is me grappling on the page (er, screen) with my uncertainty about how to receive and react to that, and the broader implications of such blurry line-drawing….which seems a function of just how little we know about the mechanisms of these diseases. My goal as a writer is to highlight as opposed to obscure the messy muddle of life, which involves a non-linear journey of learning and understanding.
I have said out loud, or at least thought, almost every word in the How Bad Is It? section.
"Even I have trouble wrapping my head around it-and I'm living it" is practically my mantra.
After 4 and 1/2 years, I am finally getting a little better, and I gauge my progress by reminding myself that, while I am still very limited, I can do things that I couldn't do a year ago. And then I think "I can't believe I couldn't shake a bottle of salad dressing and take two steps at the same time"-and if I can't believe it after living that way for four years, how can I expect others to imagine it?
I never engaged with social media before I got sick, but I am so indebted to it, and people like you. It helped me give words to my physical symptoms and, more importantly, kept reminding me that I was still part of a community (even if it is inhabited by people most of whom I will never meet).
I know there are still no definitive answers, and every case is different, so I am not making any recommendations or promises, but just to add to the knowledge base: I began to have improvement for the first time when I started seeing an acupuncturist/Eastern medicine practitioner, and I have markedly improved since I started taking LDN about three months ago.
I’m so glad - and sorry - that the How Bad is It sectjon resonated, and glad that youre enjoying the little wins! I haven’t tried acupuncture yet - are there other forms of Eastern Medicine you’ve found useful. Glad to hear LDN is helping you! I tried it for four months and didn’t notice any improvement, but I know it’s helpful for many!
Don't buy salad dressing. Squeeze a lemon. Covid stands for Citrus orange varieties instant date.
Isabel, I have long Covid. It also triggered an autoimmune disease which I now have to battle. Your article explains long covid exactly. It’s a terrible disease that is misunderstood. I get that it’s new and those of us who suffer with it are the Guinea pigs of it’s recovery. Covid was made political and it brought out an ugly side of human nature. I so desperately want the recovery of this issue to be bipartisan. Your article was great… until your last paragraph. Sadly, you made it political again. I was hoping you would use your public platform to unite us “long haulers “and unite for recognition but I guess that’s not your agenda. Now I know.