"Fatigue Can Shatter a Person" by Ed Yong, The Atlantic (fulltext link)
July 28, 2023 5:49 AM Subscribe
Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience. (archive.is)
I was able to access the essay, thank you for posting. Ed Yong is such a good writer.
posted by wicked_sassy at 6:12 AM on July 28, 2023 [5 favorites]
posted by wicked_sassy at 6:12 AM on July 28, 2023 [5 favorites]
Link to the actual Atlantic article
I know it's a kindness to MeFites to provide a link to an archive version along with the original, but skipping the original link entirely gives me a bad feeling for some reason.
posted by The Pluto Gangsta at 6:17 AM on July 28, 2023 [20 favorites]
I know it's a kindness to MeFites to provide a link to an archive version along with the original, but skipping the original link entirely gives me a bad feeling for some reason.
posted by The Pluto Gangsta at 6:17 AM on July 28, 2023 [20 favorites]
Ed Yong is such a treasure to me as a chronically ill person, in a world that has just spent three years telling us to shut up and go away.
Fatigue is one of the big effects of my own chronic illness, although thankfully Cosentyx helps reduce my fatigue dramatically. And so I have so much sympathy for my friends who are suffering Long COVID and so much concern for my friends who are getting COVID repeatedly and thus risking this happening to them too. I cannot overstate how much you do not want your whole life to be regulated by fatigue.
posted by hydropsyche at 6:26 AM on July 28, 2023 [25 favorites]
Fatigue is one of the big effects of my own chronic illness, although thankfully Cosentyx helps reduce my fatigue dramatically. And so I have so much sympathy for my friends who are suffering Long COVID and so much concern for my friends who are getting COVID repeatedly and thus risking this happening to them too. I cannot overstate how much you do not want your whole life to be regulated by fatigue.
posted by hydropsyche at 6:26 AM on July 28, 2023 [25 favorites]
I read this yesterday and immediately thought "this should be on MetaFilter."
posted by mattgriffin at 6:42 AM on July 28, 2023 [2 favorites]
posted by mattgriffin at 6:42 AM on July 28, 2023 [2 favorites]
I was diagnosed with and treated for autoimmune disease two years ago. Treatment erased several lifelong symptoms that I'd always assumed, with internalized blame, were my fault, including fatigue.
As headlines and people and docs will happily remind you over and over again, you're not eating just right (try the acai, or gluten-free, etcetc), sleeping right, exercising right, training right, working right, resting right. And if you're overweight, well, your failures to Do It Right and the Real Reason you're tired are right there in front of us, right?
Reader, I tried so hard. None of it worked. No amount of resting could help that amount of tired. I never, ever felt ok. I just said I did.
The answer was: none of the above. It was drugs. Drugs that treated a biological problem. No more fatigue. It's life- changing. And I try not to think about - is this how most people feel, all the time? Was I walking around feeling so bad, never able to fully even describe that fatigue that is far gone past what most people call "tired", among people who ... had no idea? This is normal??
And mine was mild compared to what LC people are going through.
This is why I mask. And this is why I'm very, very angry about "back to normal".
posted by Dashy at 7:40 AM on July 28, 2023 [78 favorites]
As headlines and people and docs will happily remind you over and over again, you're not eating just right (try the acai, or gluten-free, etcetc), sleeping right, exercising right, training right, working right, resting right. And if you're overweight, well, your failures to Do It Right and the Real Reason you're tired are right there in front of us, right?
Reader, I tried so hard. None of it worked. No amount of resting could help that amount of tired. I never, ever felt ok. I just said I did.
The answer was: none of the above. It was drugs. Drugs that treated a biological problem. No more fatigue. It's life- changing. And I try not to think about - is this how most people feel, all the time? Was I walking around feeling so bad, never able to fully even describe that fatigue that is far gone past what most people call "tired", among people who ... had no idea? This is normal??
And mine was mild compared to what LC people are going through.
This is why I mask. And this is why I'm very, very angry about "back to normal".
posted by Dashy at 7:40 AM on July 28, 2023 [78 favorites]
It's a good thing it's early here and I'm subverbal before coffee because I could go on and on about this.
posted by Dashy at 7:46 AM on July 28, 2023 [11 favorites]
posted by Dashy at 7:46 AM on July 28, 2023 [11 favorites]
I would love to hear more from you on this, Dashy, and I'm confident I'm not the only one.
posted by The corpse in the library at 8:27 AM on July 28, 2023 [16 favorites]
posted by The corpse in the library at 8:27 AM on July 28, 2023 [16 favorites]
I had a very similar experience pre-diagnosis, Dashy. After years of telling me everyone is tired and everyone's back hurts, my parents were genuinely worried about me by my senior year of high school, when my fatigue and back pain had gotten bad enough that they were interfering with things I wanted to do. But I still didn't get a diagnosis and treatment until I was 31, when it had finally progressed to "I can't climb stairs". And I had to persevere through one rheumatologist who told me my symptoms were fibromyalgia which in young women is always really due to PTSD, which I do not have, to finally find one who took me seriously and worked with me over months to come to the right diagnosis and treatment.
And I'm so thankful every day that the condition I have actually is recognized by doctors and has a real treatment. And I still have to deal with the people who tell me I shouldn't take biologics but instead should eliminate starch or take turmeric or do yoga or eat only meat (ye gods!).
posted by hydropsyche at 9:37 AM on July 28, 2023 [10 favorites]
And I'm so thankful every day that the condition I have actually is recognized by doctors and has a real treatment. And I still have to deal with the people who tell me I shouldn't take biologics but instead should eliminate starch or take turmeric or do yoga or eat only meat (ye gods!).
posted by hydropsyche at 9:37 AM on July 28, 2023 [10 favorites]
I haven't even been able to read the article yet but I could probably write it.
So I've been dealing what is probably long covid and a related ME/CFS complex for almost two years now and I'm just plain tired of being tired all the time.
I'm tired of feeling like an empty husk. I'm tired of feeling like my head is always wrapped in wet, moldy gauze and then molded in aspic and being squeezed in a vice almost all the time.
And I'm also really tired of hearing well meaning advice about it especially when it's super simple stuff like "Have you tried exercising more?" or "you should eat more vegetables!" like I haven't already tried that a dozen times in the last two years.
I've tried so many things that I really don't want to type the all out again because I just went through this whole list with my doctor, again. Have I tried this thing? Yes, I've tried that thing.
I'm tired of being invisible and semi-functional and people thinking I'm just lazy or depressed. Or thinking that I must be doing ok because I can still write and type.
I know what acute, chronic depression is like and this is way worse.
One of the really alarming symptoms of LC compared to depression is that even when I was so depressed I was flirting with psychosis I could listen to (or make) music and be lifted or refreshed by it or music generally felt good.
With LC I can't listen to music because it's too complicated, too overstimulating and it just leaves me exhausted and overwhelmed because it's a taxing chore.
I still try to listen to music and new stuff comes up in my music related feeds on YT or whatever and I'll skip through a track and... I can't even tell if I like it or not and then I get tired and sad and turn it off.
Even when dealing with acute depression I had joy I could find in many places and feel and be a salve to the soul. Sitting in a park or plaza people watching. Having a rousing and nerdy argument in a bar. Going for a long hike or bike ride and sitting in nature.
With LC it's like those functions and whatever magical spark of life and pleasure in these things - almost anything - is just totally gone like someone surgically removed it. I can ritualistically mash those pleasure buttons all day long and it's just exhausting because there's no joy in it and no dopamine reward of any kind and it just makes me more tired.
And well-meaning advice like "Well, you have to find whatever little things that bring you joy and keep you going!" is just so totally foreign to me now and so hard to explain that it doesn't work that way right now it's driving me batty, because there is nothing there to spark joy.
And people hate hearing this because they want to help, but it's totally foreign to them and they just don't understand how bad this is and how hard it is and how invisible most of my symptoms really are.
An example is that my doctor wants me to go to speech therapy, and everything I've seen from other people with LC is that this doesn't work and often makes things worse. Verbal communication is EXHAUSTING and so is actually physically going to a clinic.
I have to meter out how much social time and verbal communication time I have in a day. On a good day I can manage maybe 2-3 hours (total, not continuous oh no) of light verbal communication before I start slurring my speech like I'm drunk or having a stroke and can forget the name of the person standing right in front of me that I'm talking to, not to mention having alarming amounts of my vocabulary just vanish and searching for the right word.
If I push it too far I end up totally exhausted and can end up spiraling and sleeping for days after just talking to someone.
Another totally wild and messed up symptom of LC is massive amounts of non-situational free-floating anxiety and sense of impending doom that can pop up at random for no reason at all and is totally debilitating.
If I didn't already have well developed coping skills to deal with acute, chronic anxiety from PTSD and depression I would have gone totally mad by now. It's sometimes like bad psychedelic trip or war zone grade levels of anxiety and fear just flowing through me while just sitting around doing nothing but dissociating for a little while until it tamps itself back down to a dull, managable roar.
Related to this is that a lot of people with LC are reporting that they can't handle any kind of conflict at all.
And by conflict I don't mean acute conflict like arguments or yelling or normally anxiety-producing exchanges like setting boundaries with an employer or having a vigorous debate about something.
I mean even basic conflict or negotiation as simple as deciding what to have for dinner or even internal conflict, or just basic decision making processes.
This anxiety and inability to deal with even basic, normal or positive conflict is totally exhausting to me now and it makes seeking treatment and interacting with health care and self-advocating incredibly difficult.
And I haven't even addressed the physical side of this and body pain because I have a very high pain tolerance and used to do a whole lot of physical things for work or fun that naturally made my body sore and tired. I used to enjoy beating myself up doing some pretty hard core things like skateboarding concrete vert parks and crashing a lot, or going on 10 mile low tide beach hikes and scrambles over rocks and cobbles until my legs turned into pulp.
Everything hurts all the time now and it's not just getting old. If I so much as dare to do a load of laundry or some chores at the wrong time or overdo it I can end up in bed with a full body ache and burn and cramps like I ran a marathon and end up barely able to walk for days after.
A recent example is I had a friend give me a ride in their car to the nearest state welfare/disability office and just being in the car for 3 hours, and waiting to talk to a caseworker for 30 minutes left me so wiped out and exhausted I basically slept for 10-20 hours a day for two weeks after that.
It was like the overstimulation and stress of just being in a car in traffic on a major highway and having to interact with anyone for that long just pushed me over the edge and wore me down on multiple fronts.
And we're starting to see a lot more reporting about LC and how what people are experiencing is even worse than what people dealing with ME/CFS due to infections from mono or Epstein-Barr syndrome stuff, but is also somehow more insidious and harder to diagnose or even attempt to treat because it's so new and so complex and how many people aren't completely bedridden, but semi-functional husks of their former selves.
And I'm already hitting my cognitive fatigue wall.
I really miss being able to think clearly. I feel like at least half as smart as I was before covid and I appear to have serious cognitive dysfunction happening.
I miss being able to be social. I miss checking in on people and caring about them. I miss the joy of riding my bike. I miss enjoying music. I miss being able to laugh. I miss being able to find at least some joy in something, anything.
My LC has been so bad sometimes that I've been wondering or thinking in terms if I need to be in managed residential care or hospice or something, but that doesn't really exist.
If I didn't have to eat and I could just photosynthesize I would have curled up under a tree to just sit down and rest for as long as possible and not have to deal with being a human in a modern human world months and months ago.
posted by loquacious at 10:30 AM on July 28, 2023 [81 favorites]
So I've been dealing what is probably long covid and a related ME/CFS complex for almost two years now and I'm just plain tired of being tired all the time.
I'm tired of feeling like an empty husk. I'm tired of feeling like my head is always wrapped in wet, moldy gauze and then molded in aspic and being squeezed in a vice almost all the time.
And I'm also really tired of hearing well meaning advice about it especially when it's super simple stuff like "Have you tried exercising more?" or "you should eat more vegetables!" like I haven't already tried that a dozen times in the last two years.
I've tried so many things that I really don't want to type the all out again because I just went through this whole list with my doctor, again. Have I tried this thing? Yes, I've tried that thing.
I'm tired of being invisible and semi-functional and people thinking I'm just lazy or depressed. Or thinking that I must be doing ok because I can still write and type.
I know what acute, chronic depression is like and this is way worse.
One of the really alarming symptoms of LC compared to depression is that even when I was so depressed I was flirting with psychosis I could listen to (or make) music and be lifted or refreshed by it or music generally felt good.
With LC I can't listen to music because it's too complicated, too overstimulating and it just leaves me exhausted and overwhelmed because it's a taxing chore.
I still try to listen to music and new stuff comes up in my music related feeds on YT or whatever and I'll skip through a track and... I can't even tell if I like it or not and then I get tired and sad and turn it off.
Even when dealing with acute depression I had joy I could find in many places and feel and be a salve to the soul. Sitting in a park or plaza people watching. Having a rousing and nerdy argument in a bar. Going for a long hike or bike ride and sitting in nature.
With LC it's like those functions and whatever magical spark of life and pleasure in these things - almost anything - is just totally gone like someone surgically removed it. I can ritualistically mash those pleasure buttons all day long and it's just exhausting because there's no joy in it and no dopamine reward of any kind and it just makes me more tired.
And well-meaning advice like "Well, you have to find whatever little things that bring you joy and keep you going!" is just so totally foreign to me now and so hard to explain that it doesn't work that way right now it's driving me batty, because there is nothing there to spark joy.
And people hate hearing this because they want to help, but it's totally foreign to them and they just don't understand how bad this is and how hard it is and how invisible most of my symptoms really are.
An example is that my doctor wants me to go to speech therapy, and everything I've seen from other people with LC is that this doesn't work and often makes things worse. Verbal communication is EXHAUSTING and so is actually physically going to a clinic.
I have to meter out how much social time and verbal communication time I have in a day. On a good day I can manage maybe 2-3 hours (total, not continuous oh no) of light verbal communication before I start slurring my speech like I'm drunk or having a stroke and can forget the name of the person standing right in front of me that I'm talking to, not to mention having alarming amounts of my vocabulary just vanish and searching for the right word.
If I push it too far I end up totally exhausted and can end up spiraling and sleeping for days after just talking to someone.
Another totally wild and messed up symptom of LC is massive amounts of non-situational free-floating anxiety and sense of impending doom that can pop up at random for no reason at all and is totally debilitating.
If I didn't already have well developed coping skills to deal with acute, chronic anxiety from PTSD and depression I would have gone totally mad by now. It's sometimes like bad psychedelic trip or war zone grade levels of anxiety and fear just flowing through me while just sitting around doing nothing but dissociating for a little while until it tamps itself back down to a dull, managable roar.
Related to this is that a lot of people with LC are reporting that they can't handle any kind of conflict at all.
And by conflict I don't mean acute conflict like arguments or yelling or normally anxiety-producing exchanges like setting boundaries with an employer or having a vigorous debate about something.
I mean even basic conflict or negotiation as simple as deciding what to have for dinner or even internal conflict, or just basic decision making processes.
This anxiety and inability to deal with even basic, normal or positive conflict is totally exhausting to me now and it makes seeking treatment and interacting with health care and self-advocating incredibly difficult.
And I haven't even addressed the physical side of this and body pain because I have a very high pain tolerance and used to do a whole lot of physical things for work or fun that naturally made my body sore and tired. I used to enjoy beating myself up doing some pretty hard core things like skateboarding concrete vert parks and crashing a lot, or going on 10 mile low tide beach hikes and scrambles over rocks and cobbles until my legs turned into pulp.
Everything hurts all the time now and it's not just getting old. If I so much as dare to do a load of laundry or some chores at the wrong time or overdo it I can end up in bed with a full body ache and burn and cramps like I ran a marathon and end up barely able to walk for days after.
A recent example is I had a friend give me a ride in their car to the nearest state welfare/disability office and just being in the car for 3 hours, and waiting to talk to a caseworker for 30 minutes left me so wiped out and exhausted I basically slept for 10-20 hours a day for two weeks after that.
It was like the overstimulation and stress of just being in a car in traffic on a major highway and having to interact with anyone for that long just pushed me over the edge and wore me down on multiple fronts.
And we're starting to see a lot more reporting about LC and how what people are experiencing is even worse than what people dealing with ME/CFS due to infections from mono or Epstein-Barr syndrome stuff, but is also somehow more insidious and harder to diagnose or even attempt to treat because it's so new and so complex and how many people aren't completely bedridden, but semi-functional husks of their former selves.
And I'm already hitting my cognitive fatigue wall.
I really miss being able to think clearly. I feel like at least half as smart as I was before covid and I appear to have serious cognitive dysfunction happening.
I miss being able to be social. I miss checking in on people and caring about them. I miss the joy of riding my bike. I miss enjoying music. I miss being able to laugh. I miss being able to find at least some joy in something, anything.
My LC has been so bad sometimes that I've been wondering or thinking in terms if I need to be in managed residential care or hospice or something, but that doesn't really exist.
If I didn't have to eat and I could just photosynthesize I would have curled up under a tree to just sit down and rest for as long as possible and not have to deal with being a human in a modern human world months and months ago.
posted by loquacious at 10:30 AM on July 28, 2023 [81 favorites]
Also, I *still* can't read the article. The archive link isn't working for me, either and I'm getting the cypher error.
I saw reports (of whatever level of truthfulness) on reddit that the author is ok with using gift/free/archive links for this article because it's important and I would like to read it and be able to share it with people in my life.
posted by loquacious at 10:32 AM on July 28, 2023 [4 favorites]
I saw reports (of whatever level of truthfulness) on reddit that the author is ok with using gift/free/archive links for this article because it's important and I would like to read it and be able to share it with people in my life.
posted by loquacious at 10:32 AM on July 28, 2023 [4 favorites]
Ed Yong (ubermensch and global treasure) tweeted:
posted by Dashy at 10:36 AM on July 28, 2023 [17 favorites]
Sigh. Some of you seem to be able to read this during the 24-hr free period, & some are still bumping into the paywall.
Look, if anyone w/ long COVID or ME/CFS needs to read this and can't, email edyong210@gmail.com and I'll personally send you a copy.
posted by Dashy at 10:36 AM on July 28, 2023 [17 favorites]
Oh, no, loquacious, I'm so sorry! I hope your joys flock back to you. <3
posted by Don Pepino at 11:37 AM on July 28, 2023 [4 favorites]
posted by Don Pepino at 11:37 AM on July 28, 2023 [4 favorites]
Not directly related but Yong announced today was his last day at the Atlantic.
posted by meowzilla at 11:41 AM on July 28, 2023 [12 favorites]
posted by meowzilla at 11:41 AM on July 28, 2023 [12 favorites]
With LC I can't listen to music because it's too complicated, too overstimulating and it just leaves me exhausted and overwhelmed because it's a taxing chore.
Hey, so I'm having a bit of a lower week than usual, so words aren't working great, but just wanted to say I've been where you are and it's rough as hell. If you need to hear from someone else, you're not alone, it's real, and it sucks REALLY badly. I cried repeatedly about not being able to listen to music, I don't think anyone can quite understand how hard it is to loose that until they have.
I do have some advice from the COVID specialist I was lucky enough to get to see. I'd be happy to give to anyone who wants it, just me-mail me. I also hear you about having tried it all and know sometimes advice is too much, but it's there if you want it.
Hopefully I'll be a little more able to put some thoughts together this weekend, and maybe even RTFA, but for right now I wanted to drop in and let everyone who needed to hear it know, you're not alone, and there are people out there who get just how bad it is. If you need some support, I'm here for you.
posted by Gygesringtone at 11:55 AM on July 28, 2023 [15 favorites]
Hey, so I'm having a bit of a lower week than usual, so words aren't working great, but just wanted to say I've been where you are and it's rough as hell. If you need to hear from someone else, you're not alone, it's real, and it sucks REALLY badly. I cried repeatedly about not being able to listen to music, I don't think anyone can quite understand how hard it is to loose that until they have.
I do have some advice from the COVID specialist I was lucky enough to get to see. I'd be happy to give to anyone who wants it, just me-mail me. I also hear you about having tried it all and know sometimes advice is too much, but it's there if you want it.
Hopefully I'll be a little more able to put some thoughts together this weekend, and maybe even RTFA, but for right now I wanted to drop in and let everyone who needed to hear it know, you're not alone, and there are people out there who get just how bad it is. If you need some support, I'm here for you.
posted by Gygesringtone at 11:55 AM on July 28, 2023 [15 favorites]
loquacious, I'm so sorry that's happened to you. I hope a really good and effective treatment finds you SOON and brings you back your energy and your joy and your full health.
Great big hugs if you want them. I'm pulling for you.
posted by kristi at 12:03 PM on July 28, 2023 [5 favorites]
Great big hugs if you want them. I'm pulling for you.
posted by kristi at 12:03 PM on July 28, 2023 [5 favorites]
Mod note: Linked to the original article with a side link of archive.is, people can use the ones they prefer
posted by jessamyn (staff) at 12:51 PM on July 28, 2023 [3 favorites]
posted by jessamyn (staff) at 12:51 PM on July 28, 2023 [3 favorites]
I'm only just climbing out a relatively mild symptom-wise long-covid hole (8 month climb) and it was and still is fucking grueling but it is getting better on average. I mostly remained functional throughout but only because I could manage my exertion well (two+ decades practice of never diagnosed ME/CFS after a bad bout of mono in my thirties served me well I guess). I relate to pretty much everything in the article but I do have to say that even with excellent metaphors and this-is-no-joke exhortations it still cannot convey the depths of the long-covid exhaustion. I simply never experienced anything like it before and I had acute infectious mono for almost a year! I ran a marathon while not super fit just a few years ago and that post-race exhaustion didn't come close. I'm not sure I can even comprehend it myself despite having repeatedly experienced it a couple of times a week over the last two-thirds of a year. It was simply unreal. There were times when I was sitting on the couch and thought "I need to move my arm" and I just flat out couldn't. There was nothing there to get it done. The fugues were also wild. It was like time travel to near future sometimes. I can't even fully fathom my own experiences so I'm not surprised that people who have it really bad are so deep down in the hole that others can't even imagine where they are. Plus I suspect there is some serious denial based self protection from the existential dread of acknowledging the possibility of an actual living limbo. Long covid is wild and I'm not sure I could have handled it if I was someone who had glided through life never experiencing serious chronic illness before.
posted by srboisvert at 12:58 PM on July 28, 2023 [14 favorites]
posted by srboisvert at 12:58 PM on July 28, 2023 [14 favorites]
One thing that blows my mind is that if Covid had 10% mortality, we'd all still be on lockdown.
It doesn't (so party on, Wayne!). It "just" has this 10% chance of .... Long Covid!
But because humans are a) paralyzed by uncertainty and b) puritanical as all hell, we ignore what we don't really know and assume that those who are sick, are sick of their own fault or imagination or failure to Do It Right.
There is so, so much we (medicine, science) don't know about so many diseases. And we're starting from ground zero with Long Covid. No universally accepted biomarkers or diagnostic criteria. No understanding of mechanism, no treatment targets.
As is so well covered here, it's almost impossible to quantify or even communicate/describe fatigue.
Using 330M USians and conservative estimates: 250M of us have had Covid. Continue: 25M have Long Covid. 1-2M are fully disabled.
(and economists wonder where the missing job seekers are? they are dead or disabled)
Loquacious, when I ride my bike I will carry you with me.
posted by Dashy at 1:41 PM on July 28, 2023 [12 favorites]
It doesn't (so party on, Wayne!). It "just" has this 10% chance of .... Long Covid!
But because humans are a) paralyzed by uncertainty and b) puritanical as all hell, we ignore what we don't really know and assume that those who are sick, are sick of their own fault or imagination or failure to Do It Right.
There is so, so much we (medicine, science) don't know about so many diseases. And we're starting from ground zero with Long Covid. No universally accepted biomarkers or diagnostic criteria. No understanding of mechanism, no treatment targets.
As is so well covered here, it's almost impossible to quantify or even communicate/describe fatigue.
Using 330M USians and conservative estimates: 250M of us have had Covid. Continue: 25M have Long Covid. 1-2M are fully disabled.
(and economists wonder where the missing job seekers are? they are dead or disabled)
Loquacious, when I ride my bike I will carry you with me.
posted by Dashy at 1:41 PM on July 28, 2023 [12 favorites]
Effortful hugs to all experiencing LC exhaustion and similar. I'm someone whose life is being upended by long covid & I'd love to see this article get some traction beyond those who already read Ed Yong, but I'm not hopeful.
I don't usually describe my symptoms as fatigue but my experience is well reflected in the piece. I've had debilitating, near-constant, treatment-proof joint pain for 8+ months, which has constrained my ability to work, to take care of my family, and to think clearly; it's also triggered all kinds of profoundly shitty effects on my physical & mental health. Some days I can't get around at all, and some days I have to get around regardless.
Happily, the chipper tough-it-out advice isn't something I get from doctors--I get it a little from my community, but the loudest suck-it-up voice is my own. Partly it's from continued shock at being flattened so thoroughly by a disease that so many experience as a brief bad cold or without symptoms at all--but mostly because I was raised to look down on any claim of fatigue as shiftless goldbricking. Do I call this pain because I was raised to look down on any claims of weakness or fatigue? It can be kind of an isolating mindfuck to have such misgivings about the nature of my own pain, on top of the immobilizing pain itself. (I've learned to trust my experience but it has taken some practice.)
posted by miles per flower at 1:41 PM on July 28, 2023 [13 favorites]
I don't usually describe my symptoms as fatigue but my experience is well reflected in the piece. I've had debilitating, near-constant, treatment-proof joint pain for 8+ months, which has constrained my ability to work, to take care of my family, and to think clearly; it's also triggered all kinds of profoundly shitty effects on my physical & mental health. Some days I can't get around at all, and some days I have to get around regardless.
Happily, the chipper tough-it-out advice isn't something I get from doctors--I get it a little from my community, but the loudest suck-it-up voice is my own. Partly it's from continued shock at being flattened so thoroughly by a disease that so many experience as a brief bad cold or without symptoms at all--but mostly because I was raised to look down on any claim of fatigue as shiftless goldbricking. Do I call this pain because I was raised to look down on any claims of weakness or fatigue? It can be kind of an isolating mindfuck to have such misgivings about the nature of my own pain, on top of the immobilizing pain itself. (I've learned to trust my experience but it has taken some practice.)
posted by miles per flower at 1:41 PM on July 28, 2023 [13 favorites]
So, I took a bit of a nap and have a little more access to language.
And I think there's something that is missing from how most people who hear about Long Covid think about fatigue and how people with it are experiencing it. Because, I think the general public hears "fatigue" and thinks "I've been very tired from a long day/week/month before" but what we're experiencing is "the energy to do anything beyond existing isn't there". And there is no way for people to understand what that means except having experienced it themselves
I know I've mentioned this before, but for people struggling with their fatigue, (also to help anyone who is supporting someone who has long covid):
You, in the most literal way possible, probably don't have the energy. One of the things that can be causing your Long Covid symptoms is that your mitochondria are busted. If you don't know what those are they're the little bits of your cells that change oxygen and sugar into the energy your cells actually use. So it's not just that you're tired, it's not just that you're lazy, it's not that you don't want to, it's that there is not enough energy being produced on a cellular level to keep your body doing stuff your body normal does. You can't power through that anymore than a car can power through being out of gas. And it's not just physically, your brain uses a shit ton of energy. It takes energy to process stimuli, it takes energy to form thoughts and memories, it takes energy to use the proper paths to find words. Every thing you do, think, or even feel, that takes energy. Hell, the fact that your body doesn't just give in to entropy and fall apart, that takes energy.
I mean I have no specific memories from late February 2020 through July(ish) 2021. I remember specifically kind of startling in the middle of a zoom lecture for a class I was taking and wondering why I was my computer. That's the first concrete thing I remember after having Covid. Like, I had some background knowledge in my head about having had COVID and going back to school, but like any of the specific actions that lead me to be sitting there in a chair was just not there. And later talking through that with my speech pathologist they were like "yeah, well that makes since, your brain was using it's limited energy on more important things than forming memories". Which... is something to hear. And yeah, Mind fuck is the right way to describe what I've gone through. I am missing years of my life. I have experienced the Limbo of my brain not having energy for thoughts. Like loquacious said sometimes processing any stimulus, even things I enjoy, is too much.
There's more things to say, but who the hell knows what they are? Not me, finding them would take too much.
But thanks to everyone who really get what I'm talking about. There's comfort in being known.
posted by Gygesringtone at 2:50 PM on July 28, 2023 [35 favorites]
And I think there's something that is missing from how most people who hear about Long Covid think about fatigue and how people with it are experiencing it. Because, I think the general public hears "fatigue" and thinks "I've been very tired from a long day/week/month before" but what we're experiencing is "the energy to do anything beyond existing isn't there". And there is no way for people to understand what that means except having experienced it themselves
I know I've mentioned this before, but for people struggling with their fatigue, (also to help anyone who is supporting someone who has long covid):
You, in the most literal way possible, probably don't have the energy. One of the things that can be causing your Long Covid symptoms is that your mitochondria are busted. If you don't know what those are they're the little bits of your cells that change oxygen and sugar into the energy your cells actually use. So it's not just that you're tired, it's not just that you're lazy, it's not that you don't want to, it's that there is not enough energy being produced on a cellular level to keep your body doing stuff your body normal does. You can't power through that anymore than a car can power through being out of gas. And it's not just physically, your brain uses a shit ton of energy. It takes energy to process stimuli, it takes energy to form thoughts and memories, it takes energy to use the proper paths to find words. Every thing you do, think, or even feel, that takes energy. Hell, the fact that your body doesn't just give in to entropy and fall apart, that takes energy.
I mean I have no specific memories from late February 2020 through July(ish) 2021. I remember specifically kind of startling in the middle of a zoom lecture for a class I was taking and wondering why I was my computer. That's the first concrete thing I remember after having Covid. Like, I had some background knowledge in my head about having had COVID and going back to school, but like any of the specific actions that lead me to be sitting there in a chair was just not there. And later talking through that with my speech pathologist they were like "yeah, well that makes since, your brain was using it's limited energy on more important things than forming memories". Which... is something to hear. And yeah, Mind fuck is the right way to describe what I've gone through. I am missing years of my life. I have experienced the Limbo of my brain not having energy for thoughts. Like loquacious said sometimes processing any stimulus, even things I enjoy, is too much.
There's more things to say, but who the hell knows what they are? Not me, finding them would take too much.
But thanks to everyone who really get what I'm talking about. There's comfort in being known.
posted by Gygesringtone at 2:50 PM on July 28, 2023 [35 favorites]
I am so glad that people are speaking up in this thread about their experiences with LC. Some of you are among my favorite voices here and I've missed you here in the last few years, and am so sad to think maybe this is why.
Dashy, I've felt similar anger for a long time, although it's fading into climate-change-style resignation at this point (but yes, I still mask -- am usually the only person in the room but nevertheless I do it). This is my thought pattern too:
One thing that blows my mind is that if Covid had 10% mortality, we'd all still be on lockdown.
It doesn't (so party on, Wayne!). It "just" has this 10% chance of .... Long Covid!
A 10% risk of a life-changing poor outcome is so much higher than we accept with just about anything else. I actually wonder whether this is paradoxically part of the reason most people have decided to tolerate it, though. COVID has gone from being a rare disease, as it was at the beginning, to being the devil we know.
posted by eirias at 3:23 PM on July 28, 2023 [7 favorites]
Dashy, I've felt similar anger for a long time, although it's fading into climate-change-style resignation at this point (but yes, I still mask -- am usually the only person in the room but nevertheless I do it). This is my thought pattern too:
One thing that blows my mind is that if Covid had 10% mortality, we'd all still be on lockdown.
It doesn't (so party on, Wayne!). It "just" has this 10% chance of .... Long Covid!
A 10% risk of a life-changing poor outcome is so much higher than we accept with just about anything else. I actually wonder whether this is paradoxically part of the reason most people have decided to tolerate it, though. COVID has gone from being a rare disease, as it was at the beginning, to being the devil we know.
posted by eirias at 3:23 PM on July 28, 2023 [7 favorites]
And we're starting to see a lot more reporting about LC and how what people are experiencing is even worse than what people dealing with ME/CFS
Evidence required for that claim. In fact LC patients are benefiting from the decades of hard and very unrewarding slog by ME patients to highlight the serious technical and ethical problems with how these things are handled.
If you think your 2 year experience with it is bad, wait until you hit several decades, a lifetime, with no advance in understanding and treatment. Which is indisputably the situation for ME.
The rest of your comment is very good, and you have my full and genuine sympathy.
One minor but necessary quibble with Yong's otherwise excellent article. There is no good evidence for this stuff:
Over-the-counter supplements such as coenzyme Q10, which is used by mitochondria to generate energy and is depleted in ME/CFS patients, can reduce fatigue. Anti-inflammatory medications such as low-dose naltrexone may have some promise. Sleep hygiene may not cure fatigue, but certainly makes it less debilitating.
Very much a take with a grain of salt situation, until otherwise proven.
The simple appalling reality is that we have no good explanations, let alone answers, to any of this, LC or ME. Why is a question the medical profession need a far more rigorous grilling over than they have so far been subject to.
Things are changing, but slowly. There is a real and sometimes vicious resistance in medicine to acknowledging their persistent and gross failure to learn much of use from the decades of prior experience with ME/CFS and post-viral conditions in general.
Not all of medicine, of course. There are always good people in any system trying to get it fixed. But overwhelmingly, it has been a profound failure.
One of the real problems, as noted in Yong's article, is that the PEM (post-exertional malaise) component, which is almost certainly the primary defining feature of ME and of at least a large chunk of LC, seems to contradict current understanding of how the body responds to exercise/activity, and how to deal with that.
It has proven a massive intellectual and cultural roadblock, which medicine, and broader society, are not handling well.
Also, reducing it to 'fatigue' is a serious roadblock too. It is much more complicated than that. (Yong is not doing that, I add. But a lot of people are trying to do so, and have been for decades, with less than useful results.)
posted by Pouteria at 7:12 PM on July 28, 2023 [6 favorites]
Evidence required for that claim. In fact LC patients are benefiting from the decades of hard and very unrewarding slog by ME patients to highlight the serious technical and ethical problems with how these things are handled.
If you think your 2 year experience with it is bad, wait until you hit several decades, a lifetime, with no advance in understanding and treatment. Which is indisputably the situation for ME.
The rest of your comment is very good, and you have my full and genuine sympathy.
One minor but necessary quibble with Yong's otherwise excellent article. There is no good evidence for this stuff:
Over-the-counter supplements such as coenzyme Q10, which is used by mitochondria to generate energy and is depleted in ME/CFS patients, can reduce fatigue. Anti-inflammatory medications such as low-dose naltrexone may have some promise. Sleep hygiene may not cure fatigue, but certainly makes it less debilitating.
Very much a take with a grain of salt situation, until otherwise proven.
The simple appalling reality is that we have no good explanations, let alone answers, to any of this, LC or ME. Why is a question the medical profession need a far more rigorous grilling over than they have so far been subject to.
Things are changing, but slowly. There is a real and sometimes vicious resistance in medicine to acknowledging their persistent and gross failure to learn much of use from the decades of prior experience with ME/CFS and post-viral conditions in general.
Not all of medicine, of course. There are always good people in any system trying to get it fixed. But overwhelmingly, it has been a profound failure.
One of the real problems, as noted in Yong's article, is that the PEM (post-exertional malaise) component, which is almost certainly the primary defining feature of ME and of at least a large chunk of LC, seems to contradict current understanding of how the body responds to exercise/activity, and how to deal with that.
It has proven a massive intellectual and cultural roadblock, which medicine, and broader society, are not handling well.
Also, reducing it to 'fatigue' is a serious roadblock too. It is much more complicated than that. (Yong is not doing that, I add. But a lot of people are trying to do so, and have been for decades, with less than useful results.)
posted by Pouteria at 7:12 PM on July 28, 2023 [6 favorites]
I was diagnosed with and treated for autoimmune disease two years ago. Treatment erased several lifelong symptoms that I'd always assumed, with internalized blame, were my fault, including fatigue.
As headlines and people and docs will happily remind you over and over again, you're not eating just right (try the acai, or gluten-free, etcetc)
Hey,
just a wee side note, or reminder to everyone:
I'm someone who has/is celiac:
'gluten-free' frequently gets referred to dismissively, or treated as some kind of fad diet, which... Honestly impacts my life negatively.
No, people do *not* draw a distinction between people who 'actually have Celiac' when gluten gets described as some kind of fad diet thing. They just hear people talking dismissively about being gf and then do not believe I have a real medical condition. š¤¦š» Or listen when I try and explain that no, I cannot have this thing they are offering me with 'just a little bit of wheat', no, literally not even a crumb...
Punchline:
Because... Celiac disease *is* an autoimmune condition.
That's why it takes so little to set off a reaction.
And yep, absolutely, the fatigue was the worst part, I had had it since I was a child, which normalised it for everyone, I guess, ha, Elysum is just very sleepy and gets sick all the time, and I just thought that's how life *is*, it's staggering to me how much more energy and less sleep 'normal' people need. That and the brainfog.
Now, the only treatment for the autoimmune condition celiac disease, is, avoiding gluten. Unfortunately we have no other useful treatments or meds once you get diagnosed.
So yeah, it's not your autoimmune condition, but it *is* one of the more common autoimmune conditions. Pretty sure acai isn't the treatment for anyone's autoimmune condition, so we don't really need to group them in the same category?
And yep, it'll be frustrating to everyone with undiagnosed autoimmune conditions or fatigue to get that as a suggestion when it *doesn't* apply to them, but it actually is an autoimmune conditions, it didn't used to be on people's radar at all (at least in the first few decades of my life), so at least as a suggestion, it isn't completely in the wrong ballpark.
And of course, yes, being diagnosed often takes years or decades longer than it should or involves way more hoops than it should have, so par for the autoimmune course basically.
Sorry for the slight sidetrack.
I was chronically ill as a teenager and young adult, but it was interpreted as laziness or depression, or just how I was. I was always very confused by spoon theory, as I really struggled with why anyone would need *energy is a scarce and precious resource* explained to them. It turns out I have heaps of helpful low-spoons advice for friends with Chronic Fatigue, because that had been my default - they weren't used to having lower energy. I explained how to stockpile at least a couple of weeks of shelf stable healthy food than can be microwaved in one bowl instead of cooking, and how to find secret nap spaces at workplaces so that lunchtime is a 20 minute nap, and a bunch of things I hadn't realised were 'low spoons' tactics, because I had never had a lot of spoons.
But I also didn't realise that what I was experiencing really was worse than everyone else, because everyone else just seemed to think I was normal (even all my relatives exclaiming that as a child, if they didn't wake me up, I would have slept in til midday, every day! Yes. Yes I would have), so I thought I was too, and that I was just... More of a failure than other people?
I told Drs I could sleep for 16 hours, multiple days in a row, and never even got referred for a sleep study.
It was assumed that I had atypical depression!
I tried to do everything right, saw very ineffective counsellors, and I went to group therapy, and was struck at how *meanly* most people there talked about themselves?
And thought, wow, I wouldn't be able to get out of bed at all if I was mean to myself *as well*. I need every bit of pep talk to myself I can, just to get out of bed after 9-12 hours.
I didn't realise til after, that what I had had was more fatigue and burnout (which is depressing?) but that's why the treatment for my 'depression' never really made as much sense for me, or worked very well.
I had a variety of systems to make life easier on myself, like clothes laid out for the week, & breakfast, and heaters on timers, because I needed to conserve all my mental and physical energy for getting to and through jobs or study that I would frequently lose. I have adhd too, or still, but. The energy.
So yeah, I was living life was on Hard mode, didn't even know, and wow, now it's just easier.
posted by Elysum at 11:21 PM on July 28, 2023 [13 favorites]
As headlines and people and docs will happily remind you over and over again, you're not eating just right (try the acai, or gluten-free, etcetc)
Hey,
just a wee side note, or reminder to everyone:
I'm someone who has/is celiac:
'gluten-free' frequently gets referred to dismissively, or treated as some kind of fad diet, which... Honestly impacts my life negatively.
No, people do *not* draw a distinction between people who 'actually have Celiac' when gluten gets described as some kind of fad diet thing. They just hear people talking dismissively about being gf and then do not believe I have a real medical condition. š¤¦š» Or listen when I try and explain that no, I cannot have this thing they are offering me with 'just a little bit of wheat', no, literally not even a crumb...
Punchline:
Because... Celiac disease *is* an autoimmune condition.
That's why it takes so little to set off a reaction.
And yep, absolutely, the fatigue was the worst part, I had had it since I was a child, which normalised it for everyone, I guess, ha, Elysum is just very sleepy and gets sick all the time, and I just thought that's how life *is*, it's staggering to me how much more energy and less sleep 'normal' people need. That and the brainfog.
Now, the only treatment for the autoimmune condition celiac disease, is, avoiding gluten. Unfortunately we have no other useful treatments or meds once you get diagnosed.
So yeah, it's not your autoimmune condition, but it *is* one of the more common autoimmune conditions. Pretty sure acai isn't the treatment for anyone's autoimmune condition, so we don't really need to group them in the same category?
And yep, it'll be frustrating to everyone with undiagnosed autoimmune conditions or fatigue to get that as a suggestion when it *doesn't* apply to them, but it actually is an autoimmune conditions, it didn't used to be on people's radar at all (at least in the first few decades of my life), so at least as a suggestion, it isn't completely in the wrong ballpark.
And of course, yes, being diagnosed often takes years or decades longer than it should or involves way more hoops than it should have, so par for the autoimmune course basically.
Sorry for the slight sidetrack.
I was chronically ill as a teenager and young adult, but it was interpreted as laziness or depression, or just how I was. I was always very confused by spoon theory, as I really struggled with why anyone would need *energy is a scarce and precious resource* explained to them. It turns out I have heaps of helpful low-spoons advice for friends with Chronic Fatigue, because that had been my default - they weren't used to having lower energy. I explained how to stockpile at least a couple of weeks of shelf stable healthy food than can be microwaved in one bowl instead of cooking, and how to find secret nap spaces at workplaces so that lunchtime is a 20 minute nap, and a bunch of things I hadn't realised were 'low spoons' tactics, because I had never had a lot of spoons.
But I also didn't realise that what I was experiencing really was worse than everyone else, because everyone else just seemed to think I was normal (even all my relatives exclaiming that as a child, if they didn't wake me up, I would have slept in til midday, every day! Yes. Yes I would have), so I thought I was too, and that I was just... More of a failure than other people?
I told Drs I could sleep for 16 hours, multiple days in a row, and never even got referred for a sleep study.
It was assumed that I had atypical depression!
I tried to do everything right, saw very ineffective counsellors, and I went to group therapy, and was struck at how *meanly* most people there talked about themselves?
And thought, wow, I wouldn't be able to get out of bed at all if I was mean to myself *as well*. I need every bit of pep talk to myself I can, just to get out of bed after 9-12 hours.
I didn't realise til after, that what I had had was more fatigue and burnout (which is depressing?) but that's why the treatment for my 'depression' never really made as much sense for me, or worked very well.
I had a variety of systems to make life easier on myself, like clothes laid out for the week, & breakfast, and heaters on timers, because I needed to conserve all my mental and physical energy for getting to and through jobs or study that I would frequently lose. I have adhd too, or still, but. The energy.
So yeah, I was living life was on Hard mode, didn't even know, and wow, now it's just easier.
posted by Elysum at 11:21 PM on July 28, 2023 [13 favorites]
The latest This Week in Virology is about this very topic.
Covers some of the same ground but differently... seems like a good companion piece to this article.
posted by inexorably_forward at 1:40 AM on July 29, 2023 [4 favorites]
Covers some of the same ground but differently... seems like a good companion piece to this article.
posted by inexorably_forward at 1:40 AM on July 29, 2023 [4 favorites]
And I had to persevere through one rheumatologist who told me my symptoms were fibromyalgia which in young women is always really due to PTSD
Just to gently push back on this idea, fibromyalgia can have many causes, including infection.
Fatigue is the worst symptom as everyone understands being tired and so thinks they can imagine fatigue, but they are worlds apart. Iām dealing with hypothyroidism on top of existing fatigue and itās taking way longer to treat than normal so Iāve just been exhausted for most of this year.
posted by ellieBOA at 10:31 AM on July 29, 2023 [2 favorites]
Just to gently push back on this idea, fibromyalgia can have many causes, including infection.
Fatigue is the worst symptom as everyone understands being tired and so thinks they can imagine fatigue, but they are worlds apart. Iām dealing with hypothyroidism on top of existing fatigue and itās taking way longer to treat than normal so Iāve just been exhausted for most of this year.
posted by ellieBOA at 10:31 AM on July 29, 2023 [2 favorites]
Not directly related but Yong announced today was his last day at the Atlantic.
He shared his (free) newsletter as the best way to keep up with his writing (on chronic illness amongst other things).
posted by ellieBOA at 10:34 AM on July 29, 2023 [5 favorites]
He shared his (free) newsletter as the best way to keep up with his writing (on chronic illness amongst other things).
posted by ellieBOA at 10:34 AM on July 29, 2023 [5 favorites]
Iāve been scared to listen to that TWiV because of how dismissive theyāve been in the past . How is this one?
posted by Bottlecap at 12:43 PM on July 29, 2023 [1 favorite]
posted by Bottlecap at 12:43 PM on July 29, 2023 [1 favorite]
Evidence required for that claim. In fact LC patients are benefiting from the decades of hard and very unrewarding slog by ME patients to highlight the serious technical and ethical problems with how these things are handled.
If you think your 2 year experience with it is bad, wait until you hit several decades, a lifetime, with no advance in understanding and treatment. Which is indisputably the situation for ME.
I may have worded this badly, and it's disability and illness isn't a contest. I'm not trying to throw anyone under the bus.
First, I want to point out that one thing that's common in LC forums is thankfulness for the work that people with ME/CFS have done and how we are being taken more seriously because of it. Perhaps not unlike the effects of having an older sibling pave the way for younger siblings.
Another point is that I've read a lot of reports from people who were already dealing with ME/CFS before the pandemic and who are now dealing with LC related ME/CFS is that they report that LC is much, much worse for them than ME/CFS was.
I also have family history of ME/CFS from what was probably a combination of a severe mono infection, Epstein-Barr and then what was very likely a vaccine injury that left them ongoing ME/CFS.
While this is totally anecdotal, said family member was and is way more functional than I am. They're able to travel, work and do self care and care for family that I'm not readily capable of. They're also apparently not dealing with the same level of psychological and neuro problems as people LC.
I don't have the article handy because my everything is a mess, but as I recall it involved a study of quality of life and ability in people dealing with LC and comparing that to similar studies of the same metrics in other chronic or even terminal diseases. It wasn't some random opinion piece and was on one of the reliable science/health sites and was a summary of an actual study, not some random thinkpiece or blog article.
The summary and TL;DR is that a LC was ranking much higher or generally worse for ability of quality of life not only compared to ME/CFS but people dealing with severe or terminal cancers.
Up until I saw this article I had been thinking about LC in terms like it was a lighter or lesser version of ME/CFS and beating myself up too much for not getting better or being able to claw my way out of it, because I was specifically comparing myself with people dealing with ME/CFS as a baseline to try to learn how they were managing it.
When it's becoming more clear - at least to me personally - that this is not the case because of the significant amount of cognitive decline, psychological and neurological issues like totally out of scale anxiety and fear for no good reasons, the ongoing cardiac health issues and arrythmia and unmanageable body pain issues.
At this point - and again, this is anecdotal - I am *very* comfortable stating that whatever it is I've been dealing with is indeed worse than any ME/CFS cases I've seen or heard of and that on balance, on average, and in terms of total number of cases LC *is* worse than ME/CFS, specifically because of the extra complex of symptoms I've been dealing with that fall outside of and addition to something that resembles ME/CFS.
Because it's like having full blown acute ME/CFS while also surviving a stroke and maybe a heart attack and fibromyalgia all at the same time and there's a lot more going on with LC than it appears. It's like ME/CFS juiced up on steroids with dubious bonus prizes.
And again, if you or anyone is dealing with ME/CFS, I'm not trying to discount those experiences because ME/CFS is bad enough.
(And please be patient with me. My communication and rhetorical skills aren't what they used to be. I used to whip out commentary like this in 15 minutes and this has taken me over an hour and some change with breaks.)
posted by loquacious at 12:59 PM on July 29, 2023 [4 favorites]
If you think your 2 year experience with it is bad, wait until you hit several decades, a lifetime, with no advance in understanding and treatment. Which is indisputably the situation for ME.
I may have worded this badly, and it's disability and illness isn't a contest. I'm not trying to throw anyone under the bus.
First, I want to point out that one thing that's common in LC forums is thankfulness for the work that people with ME/CFS have done and how we are being taken more seriously because of it. Perhaps not unlike the effects of having an older sibling pave the way for younger siblings.
Another point is that I've read a lot of reports from people who were already dealing with ME/CFS before the pandemic and who are now dealing with LC related ME/CFS is that they report that LC is much, much worse for them than ME/CFS was.
I also have family history of ME/CFS from what was probably a combination of a severe mono infection, Epstein-Barr and then what was very likely a vaccine injury that left them ongoing ME/CFS.
While this is totally anecdotal, said family member was and is way more functional than I am. They're able to travel, work and do self care and care for family that I'm not readily capable of. They're also apparently not dealing with the same level of psychological and neuro problems as people LC.
I don't have the article handy because my everything is a mess, but as I recall it involved a study of quality of life and ability in people dealing with LC and comparing that to similar studies of the same metrics in other chronic or even terminal diseases. It wasn't some random opinion piece and was on one of the reliable science/health sites and was a summary of an actual study, not some random thinkpiece or blog article.
The summary and TL;DR is that a LC was ranking much higher or generally worse for ability of quality of life not only compared to ME/CFS but people dealing with severe or terminal cancers.
Up until I saw this article I had been thinking about LC in terms like it was a lighter or lesser version of ME/CFS and beating myself up too much for not getting better or being able to claw my way out of it, because I was specifically comparing myself with people dealing with ME/CFS as a baseline to try to learn how they were managing it.
When it's becoming more clear - at least to me personally - that this is not the case because of the significant amount of cognitive decline, psychological and neurological issues like totally out of scale anxiety and fear for no good reasons, the ongoing cardiac health issues and arrythmia and unmanageable body pain issues.
At this point - and again, this is anecdotal - I am *very* comfortable stating that whatever it is I've been dealing with is indeed worse than any ME/CFS cases I've seen or heard of and that on balance, on average, and in terms of total number of cases LC *is* worse than ME/CFS, specifically because of the extra complex of symptoms I've been dealing with that fall outside of and addition to something that resembles ME/CFS.
Because it's like having full blown acute ME/CFS while also surviving a stroke and maybe a heart attack and fibromyalgia all at the same time and there's a lot more going on with LC than it appears. It's like ME/CFS juiced up on steroids with dubious bonus prizes.
And again, if you or anyone is dealing with ME/CFS, I'm not trying to discount those experiences because ME/CFS is bad enough.
(And please be patient with me. My communication and rhetorical skills aren't what they used to be. I used to whip out commentary like this in 15 minutes and this has taken me over an hour and some change with breaks.)
posted by loquacious at 12:59 PM on July 29, 2023 [4 favorites]
loquacious, I believe this was the article you were referring to:
Long Covid can impair quality of life more than advanced cancers, study says:
Some patientsā health-related life quality scores worse than those of people with stage 4 lung cancer
And the study:
Impact of fatigue as the primary determinant of functional limitations among patients with post-COVID-19 syndrome: a cross-sectional observational study
posted by MrVisible at 1:19 PM on July 29, 2023 [3 favorites]
Long Covid can impair quality of life more than advanced cancers, study says:
Some patientsā health-related life quality scores worse than those of people with stage 4 lung cancer
And the study:
Impact of fatigue as the primary determinant of functional limitations among patients with post-COVID-19 syndrome: a cross-sectional observational study
posted by MrVisible at 1:19 PM on July 29, 2023 [3 favorites]
I'm curious how long COVID will wind up comparing to HIV-associated neurocognitive disorder. I looked in PubMed just now to see if anyone has written about this yet, but didn't find anything.
posted by eirias at 2:45 PM on July 29, 2023
posted by eirias at 2:45 PM on July 29, 2023
Just to gently push back on this idea, fibromyalgia can have many causes, including infection.
Sorry to be unclear--it was the terrible shitty rheumatologist who was dismissing fibromyalgia in young women as always due to PTSD, not me. I did in fact have fibromyalgia at the time, secondary to ankylosing spondylitis, which he completely missed because he was too busy dismissing every single young women who walked in his office.
posted by hydropsyche at 3:40 PM on July 29, 2023 [5 favorites]
Sorry to be unclear--it was the terrible shitty rheumatologist who was dismissing fibromyalgia in young women as always due to PTSD, not me. I did in fact have fibromyalgia at the time, secondary to ankylosing spondylitis, which he completely missed because he was too busy dismissing every single young women who walked in his office.
posted by hydropsyche at 3:40 PM on July 29, 2023 [5 favorites]
Both my sister and my best friend got COVID at the beginning of the pandemic, and both ended up with LC. My friend is doing better, though it took almost two years for her to feel anything close to normal; my sister is still struggling, especially with POTS.
One of my huge concerns is around disability payments for folks struggling with this condition. My friend is currently suing her insurance company for not paying out her longterm disability (or something similar -- I'm fuzzy on the details, but long story short, they owe her a lot of money). My sister has been denied federal disability three times and has a hearing coming up this week. It's hard enough to get disability in this country, and now you're going to have millions of folks unable to work because of LC. What exactly are they supposed to do?!
posted by leftover_scrabble_rack at 3:54 PM on July 29, 2023 [5 favorites]
One of my huge concerns is around disability payments for folks struggling with this condition. My friend is currently suing her insurance company for not paying out her longterm disability (or something similar -- I'm fuzzy on the details, but long story short, they owe her a lot of money). My sister has been denied federal disability three times and has a hearing coming up this week. It's hard enough to get disability in this country, and now you're going to have millions of folks unable to work because of LC. What exactly are they supposed to do?!
posted by leftover_scrabble_rack at 3:54 PM on July 29, 2023 [5 favorites]
āOur society is not set up for pacing,ā Oller added. Long-haulers must resist the enormous cultural pressure to prove their worth by pushing as hard as they can. They must tolerate being chastised for trying to avert a crash, and being disbelieved if they fail. āOne of the most insulting things people can say is āFight your illness,āā Misko said. That would be much easier for her. āIt takes so much self-control and strength to do less, to be less, to shrink your life down to one or two small things from which you try to extract joy in order to survive.ā For her and many others, rest has become both a medical necessity and a radical act of defianceāone that, in itself, is exhausting.
We are enormously strong. As more long haulers join the me/cfs community, I hope that we continue to expand our arms and understand that we are stronger united. The causes of me/cfs are varied, but almost all seem to begin with an illness. Usually viral. Itās been heartbreaking for the community to expand so quickly. So many of us tried so hard to make people understand that they didnāt want to join us. But I am reminded over and over that my internal strength is superhero level and I should (quietly) celebrate myself.
posted by Bottlecap at 6:15 PM on July 29, 2023 [11 favorites]
We are enormously strong. As more long haulers join the me/cfs community, I hope that we continue to expand our arms and understand that we are stronger united. The causes of me/cfs are varied, but almost all seem to begin with an illness. Usually viral. Itās been heartbreaking for the community to expand so quickly. So many of us tried so hard to make people understand that they didnāt want to join us. But I am reminded over and over that my internal strength is superhero level and I should (quietly) celebrate myself.
posted by Bottlecap at 6:15 PM on July 29, 2023 [11 favorites]
At this point - and again, this is anecdotal - I am *very* comfortable stating that whatever it is I've been dealing with is indeed worse than any ME/CFS cases I've seen or heard of and that on balance, on average, and in terms of total number of cases LC *is* worse than ME/CFS, specifically because of the extra complex of symptoms I've been dealing with that fall outside of and addition to something that resembles ME/CFS.
I think quite a lot of this is that people who have moderate and severe me/cfs are completely invisible. The people you are describing being able to travel have extremely mild cfs. The people responding to surveys have more mild cfs. The people who are still going to doctors have mild cfs. Because people with moderate and severe cfs rarely leave their beds, much less their homes.
From my vantage point, whatās happened is that instead of people getting me/cfs in solitary events like the flu, we are having massive cohorts getting it at the same time. There are a lot of people who have been posting on the internet and forums all at the same time. Contrast this to the people who posted blogs describing these same things but who gradually stop posting as the effort to do so is not possible.
There are unique things going on with long covid, 100%.
AND most of the descriptions that people have ā¦ I have been sick since the 90s. I have been reading and writing about me/cfs for 30 years. The symptoms are not unique or uncommon for people with moderate to severe me/cfs. Absolutely all of it has been documented. Itās just that thereās a whole bunch of people who have a store of energy to describe their experiences right now. That energy *goes away.* You become invisible. Because of course the only people you are going to hear about are the ones who can travel. The rest of us are invisible.
posted by Bottlecap at 6:31 PM on July 29, 2023 [12 favorites]
I think quite a lot of this is that people who have moderate and severe me/cfs are completely invisible. The people you are describing being able to travel have extremely mild cfs. The people responding to surveys have more mild cfs. The people who are still going to doctors have mild cfs. Because people with moderate and severe cfs rarely leave their beds, much less their homes.
From my vantage point, whatās happened is that instead of people getting me/cfs in solitary events like the flu, we are having massive cohorts getting it at the same time. There are a lot of people who have been posting on the internet and forums all at the same time. Contrast this to the people who posted blogs describing these same things but who gradually stop posting as the effort to do so is not possible.
There are unique things going on with long covid, 100%.
AND most of the descriptions that people have ā¦ I have been sick since the 90s. I have been reading and writing about me/cfs for 30 years. The symptoms are not unique or uncommon for people with moderate to severe me/cfs. Absolutely all of it has been documented. Itās just that thereās a whole bunch of people who have a store of energy to describe their experiences right now. That energy *goes away.* You become invisible. Because of course the only people you are going to hear about are the ones who can travel. The rest of us are invisible.
posted by Bottlecap at 6:31 PM on July 29, 2023 [12 favorites]
Ugh that comment reads really confrontational, and I apologize that is not my intent. Iām really just trying to say that those of us who say āyeah, I get it Iāve been doing this for decadesā know what weāre talking about. We donāt misunderstand your suffering. We want you to know that we are here and have been here. That we have been advocating and creating spaces and all of that feeling the way you do now. Eventually a lot of us have to stop because we canāt sustain the energy anymore and thatās why you donāt see us. But we see you and weāre cheering for you.
posted by Bottlecap at 6:39 PM on July 29, 2023 [7 favorites]
posted by Bottlecap at 6:39 PM on July 29, 2023 [7 favorites]
Re: Bottlecapās comment about invisibility ā selection bias is such a huge problem in so many ways. Ten percent ā or even two percent ā is enough to change views, once you have a voice. We saw that with gay rights (though I know the battle continues, and in many ways has intensified over the last few years). But if shame and disability are hiding you from view, thatās very hard to do.
Itās worth remembering too that long COVID as a whole, those 10% estimates, thatās not all ME/CFS. Some of it is new-onset chronic health conditions like diabetes and cardiac issues. But those, too, tend to be subject to shaming, especially if you donāt lead a Prevention Magazine kinda life. This, too, militates against visibility and banding together, and contributes to what I think is a widespread belief that 10% is an overestimate.
posted by eirias at 6:56 PM on July 29, 2023 [5 favorites]
Itās worth remembering too that long COVID as a whole, those 10% estimates, thatās not all ME/CFS. Some of it is new-onset chronic health conditions like diabetes and cardiac issues. But those, too, tend to be subject to shaming, especially if you donāt lead a Prevention Magazine kinda life. This, too, militates against visibility and banding together, and contributes to what I think is a widespread belief that 10% is an overestimate.
posted by eirias at 6:56 PM on July 29, 2023 [5 favorites]
Hi--person who has had congenital dysautonomia all their life here, now a year into long Covid! And I have some thoughts about comparisons of chronic fatigue/myalgic encephalomyelitis with long Covid and with congenital dysautonomic statuses.
Or really, I have one basic conclusion, which is that they are all related, which is what we should focus on--AND they are distinctive life experiences, which we should acknowledge--AND I would gently urge that trying to rank them into a hierarchy of suffering won't really help us.
One of the things that is central to the experience of being a member of a marginalized group is that you have to face social disrespect, day in and day out. The way this manifests when aimed at people of color or trans folks or people with disabilities varies in flavor, but basically you will be blamed for your suffering--told that your laziness or immorality or weakness explains your difficult life circumstances. Everyone who is dealing with autonomic dysfunctions and/or mitochondrial disorders thus suffers not just from a series of difficult medical problems--we suffer from being perceived as lazy freeloaders and as hypochondriacs, including by some or all of the medical staff we encounter. This isn't unique to us! Speaking as a transmasculine person with a transfemme wife and as the parent of a child of color, I've seen firsthand how medical staff will automatically classify patients in their minds as malingering and drug-seeking when they perceive them as trans and/or of color. To be marginalized is to be regularly mistreated, not just socially, but medically.
So, I can anecdotally compare my experiences of congenital dysautonomia and long Covid, but I have to do it along two dimensions. One is the dimension of symptoms, and the other is in terms of social and medical treatment.
Along the symptom axis, let me first note that my daughter inherited EDS and dysautonomia from me--the two seem to cluster together pretty frequently. But while we have the same syndromes, my now-adult kid has always been a lot more disabled than I am. Before she turned two she was already being sent to a neurologist. She was always easily exhausted, and only made it through the 6th grade before we had to start homeschooling her as she was just unable to handle more than a couple of hours of school a day. (Our school system said they could not write her an IEP allowing her to be absent half the time, or attend half days, or leave early upon her request. At the time, my daughter was diagnosed with a combination of 6 systemic disorders, including POTS and "fibromyalgia," but the medical staff person on the IEP negotiating team considered all the diagnoses "vague", and it said right there on her medical records from the pediatric pain clinic she was attending that the lead physician thought she was an "Hispanic" girl who was culturally overanxious and hysteria-prone, who should be told not to consider herself disabled and pushed to complain less and do more. Aargh.)
Anyway. While my daughter and I both have EDS and dysautonomia, I was not as disabled by them as she has always been. And that is the first lesson of trying to compare differing so-called "fatigue" syndromes. They are just so variable from individual to individual. I was able to work full time (though I slept 10 hours a night and through a lot of the weekend hours to manage it). My daughter can only do active things like walk to get groceries or visit a doctor for about 10-15 hours a week--and when her body makes those hours available is unpredictable. If she has to visit a doctor or wants to visit a friend and her body is in the red zone, she can do it, but then suffers the post-exertional malaise so clearly described in the article and folks' comments here, and is out of commission for days, just lying in bed.
Because our experiences of dysautonomia are so different, if a person with long Covid were to seek anecdata by comparing themselves to a person with congenital dysautonomia, they might come to very different conclusions comparing themselves to my daughter, and to me before I acquired long Covid.
OK, that established, how would I compare my personal experiences of the symptoms of congenital dysautonomia and long Covid? There are two differences: the symptom range, and the symptom severity. In terms of range, my long Covid symptoms include cognitive impairment (I hate the term "brain fog," which sounds vague and vaporous, like the faint disassociative blur of "medicine head" when you take some antihistamines). For me, as an academic, this has been the worst issue to deal with: the loss of short-term memory makes me lose my train of thought all the time, while the loss of long-term memory means losing words constantly, not being able to remember the names of theories I've been teaching about for years, or book titles or author names or film titles, or the names of my own students or the members of my work and professional colleagues. When I write--I'm doing this right now--I have thesaurus and Google and Wikipedia tabs open at all times to use to retrieve lost words--plus articles and my own old blog posts and emails and a pad of paper with notes, using all of them as mental prosthetics to help me fill in all the holes in my memory. This loss of mental capacity is disabling and scarier than the loss of physical capacity for me. It is, as one of the individuals in the Atlantic article noted, like being concussed.
Then there is the physical exhaustion aspect. Before Covid, my dysautonomia kept me from being able to run at all, but I could walk at a pace typical of folks in my town (if not at the pace of a New Yorker). Now, at almost a year out from catching Covid, I cannot walk more than 10 steps at a typical Midwestern walking pace. I have to amble very slowly, pausing every 20 or 30 seconds. My family of origin and a physical therapist and a clinic nurse have all told me I have become deconditioned and obviously need to exercise more and harder, and just pick up my walking pace. I cannot do it, any more than I could run when living with just my congenital dysautonomia! My legs burn as if I'd been running up a hill. Trying to walk faster than a snail's pace means I will arrive at my classroom too exhausted to lecture. Mind you, as someone with EDS I have torn ligaments my whole life, and I'm familiar with the routine of building back strength that every PT course involves. As someone dysautonomic, I have always been behind on these expected recovery schedules, and eternally treated by physical therapists as rather disappointing and probably lazy, but I have indeed always worked at my recoveries and got there eventually, if months behind the schedule set for me. But if a PT set a 2-month recovery window after tearing a knee ligament, and it used to take me 4 months to reach that recovery, now it would probably take me 6, because I have so little stamina.
Some of that is surely due to my poor oxygenation. Before Covid, my oxygenation was around 96%. A week and a half into my Covid case, it was down in the lower 80s. And today, it is in the low 90s. Better, but not great. I have trouble catching my breath with any exertion, and a single flight of steps has me panting like I just ran up a bunch of flights.
As we can see, we can't just talk about the different range of symptoms I experience--we have to talk about their severity over time. I have had dysautonomia my whole life, and it was predictable over the long run, if unpredictable when looking at a how much energy I'd have on a single day. I knew my symptoms and had lifelong coping strategies for dealing with them. I might have to think about things my abled friends didn't, and that could be quite annoying, but it wasn't scary because it was comprehensible and just there, just like my lax hypermobile joints were there.
But long Covid starts with a bang with the acute infection, and then you start to get better--but that recovery curve slows. So for example, I lost my sense of smell completely for just a couple of weeks. Then it started to come back online with the really weird experience in my case of the whole world smelling strongly of vinegary ketchup for two weeks. Then the range of things I could smell expanded, and the sense of being in a room slathered with ketchup on every surface faded. Today, a year out? The occasional whiff of phantom ketchup, and a moderate range of scent detection, but there are many things I still apparently don't smell, and often food has little flavor. I feel like my sense of smell is continuing to improve a little bit over time, but the recovery curve has been asymptotic. For my cognition issues, the first three months I was in terrible shape. I was able to move my in-person teaching online, but it was taking me hours to grade student work because I'd forget what they said two sentences ago in an essay, and writing feedback was agonizingly slow as I had to talk around lost words into Google searches to find words I could not remember in every single sentence I wrote. Now a year out, I feel like I'm close to 2/3 recovered, but additional progress is again asymptotic and slowing to tiny increments.
And that is the thing about long Covid: it is like so many acquired disabilities. It hits you, and a predictable life is suddenly altered. This raises a series of issues: not knowing how much will you recover; not knowing the time frame of that recovery; and having to acquire new accommodations and adapt to new limitations. Those all cause stress and anxiety. And then there is the social component of having to be seen in a new light as disabled, or as additionally disabled in a new way.
When a person who was abled suddenly becomes disabled, relations between them and long-disabled or otherwise marginalized people can be strained. The abled person who suddenly acquires a disability typically goes through the classic stages of mourning ("Denial Anger Bargaining Depression Acceptance, please hold!"). This is understandable, but can alienate people who have been disabled for all or most of their lives, who take the disability rights perspective that their bodies and abilities are central things that define them as who they are, and cringe at their capacities being described by a fellow-traveler as making a person and their life lesser, tragic, intolerable.
I've also seen newly-disabled people seriously get on the nerves of people who are marginalized along other axes of oppression. As I pointed out earlier, many marginalized groups of people experience doctors treating them poorly, dismissing their symptoms, failing to order adequate tests, giving them generic judgmental advice to just exercise and eat better and lose weight and telling them no, they are not going to get any meds or a temporary disability parking sticker just because they "feel tired." If you are, say, a trans woman and/or a Black woman who has been one of a vast chorus of voices crying out about the terribly dismissive and inadequate medical care they and others like them experience, and then a person with long Covid expresses utter shock and disbelief that their LC symptoms aren't being taken seriously. . . well it can sound like the person who is newly disabled never believed them when they said this is what happens to marginalized people encountering the medical profession. Which could be totally inaccurate--perhaps the newly disabled person believed it happened to others and was deeply concerned and actually did try to take action on the issue, but just hadn't ever experienced it personally and is expressing shock at that. But it also could be accurate.
Anyway, at the start of this long ramble (we long Covid folks do need a place to talk about this stuff), what do I have to say about my experiences of long Covid and congenital dysautonomia? First, the lack of energy, exercise intolerance, and post-exertional malaise of long Covid are very similar to my congenital dysautonomic symptoms. Long Covid made those aspects of my dysautonomia worse. Whether I'd have had a better recovery if I didn't go into Covid with dysautonomia I cannot be sure, but I strongly suspect that to be the case.
Secondly, my congenital dysautonomia causes issues for me that long Covid did not affect at all. For example, my dysautonomia makes me have trouble regulating my body temperature. I go out in the sun, it zooms up to 103 F. I lurch into a chilly store with the AC blasting, and my body temperature plunges right down to 94. This has not changed at all since getting Covid. Conversely, there are long Covid symptoms that I never experienced before, like the loss of my sense of smell--the recovery of which is as incomplete and taking as long as my recovery from the cognitive and energy impairments. So the two syndromes are distinctive.
Thirdly--I have found long Covid distressing, but aside from the cognitive effects, it wasn't a shock to me, and while it has made my life more difficult, I have nevertheless mostly taken it in stride. I was disabled. I was worried that Covid would exacerbate this. I was correct, and it did. Nobody has ever accommodated my dysautonomia, and that hasn't changed. I was anxious as my body has fallen apart more and more as a 60-year-old with EDS about my ability to keep managing a workplace that has done little if anything to accommodate me. Now I'm in worse shape, but it's not like being anxious about being able to put one foot in front of the other to make it through my workdays is new. I'm substantially more anxious about the constricting of trans rights, because that's something that was actually improving, and now we're back to feeling unsafe.
In the end, I am impressed by the perseverance that so many folks, including myself, continue to exhibit under difficult circumstances. We are having to deal with a lot, and we are not getting the respect or support we deserve. I hesitate to use the word "resilience," because, like "wellness," it's become one of those buzzwords used to slap a happy face sticker over our being forced by rapacious capitalists to produce more and more profit for them and receiving ever-growing precarity in return. To the extent that we do have resilient energy beyond that needed for basic survival, I believe it should be put into fighting for justice for ourselves and our fellow travelers. But when we don't have that energy, there's still pride to take in surviving another day. And maybe spending all of a Saturday night slowly writing out a perhaps-overlong MetaFilter post about the experience. . .
posted by DrMew at 11:25 PM on July 29, 2023 [56 favorites]
Or really, I have one basic conclusion, which is that they are all related, which is what we should focus on--AND they are distinctive life experiences, which we should acknowledge--AND I would gently urge that trying to rank them into a hierarchy of suffering won't really help us.
One of the things that is central to the experience of being a member of a marginalized group is that you have to face social disrespect, day in and day out. The way this manifests when aimed at people of color or trans folks or people with disabilities varies in flavor, but basically you will be blamed for your suffering--told that your laziness or immorality or weakness explains your difficult life circumstances. Everyone who is dealing with autonomic dysfunctions and/or mitochondrial disorders thus suffers not just from a series of difficult medical problems--we suffer from being perceived as lazy freeloaders and as hypochondriacs, including by some or all of the medical staff we encounter. This isn't unique to us! Speaking as a transmasculine person with a transfemme wife and as the parent of a child of color, I've seen firsthand how medical staff will automatically classify patients in their minds as malingering and drug-seeking when they perceive them as trans and/or of color. To be marginalized is to be regularly mistreated, not just socially, but medically.
So, I can anecdotally compare my experiences of congenital dysautonomia and long Covid, but I have to do it along two dimensions. One is the dimension of symptoms, and the other is in terms of social and medical treatment.
Along the symptom axis, let me first note that my daughter inherited EDS and dysautonomia from me--the two seem to cluster together pretty frequently. But while we have the same syndromes, my now-adult kid has always been a lot more disabled than I am. Before she turned two she was already being sent to a neurologist. She was always easily exhausted, and only made it through the 6th grade before we had to start homeschooling her as she was just unable to handle more than a couple of hours of school a day. (Our school system said they could not write her an IEP allowing her to be absent half the time, or attend half days, or leave early upon her request. At the time, my daughter was diagnosed with a combination of 6 systemic disorders, including POTS and "fibromyalgia," but the medical staff person on the IEP negotiating team considered all the diagnoses "vague", and it said right there on her medical records from the pediatric pain clinic she was attending that the lead physician thought she was an "Hispanic" girl who was culturally overanxious and hysteria-prone, who should be told not to consider herself disabled and pushed to complain less and do more. Aargh.)
Anyway. While my daughter and I both have EDS and dysautonomia, I was not as disabled by them as she has always been. And that is the first lesson of trying to compare differing so-called "fatigue" syndromes. They are just so variable from individual to individual. I was able to work full time (though I slept 10 hours a night and through a lot of the weekend hours to manage it). My daughter can only do active things like walk to get groceries or visit a doctor for about 10-15 hours a week--and when her body makes those hours available is unpredictable. If she has to visit a doctor or wants to visit a friend and her body is in the red zone, she can do it, but then suffers the post-exertional malaise so clearly described in the article and folks' comments here, and is out of commission for days, just lying in bed.
Because our experiences of dysautonomia are so different, if a person with long Covid were to seek anecdata by comparing themselves to a person with congenital dysautonomia, they might come to very different conclusions comparing themselves to my daughter, and to me before I acquired long Covid.
OK, that established, how would I compare my personal experiences of the symptoms of congenital dysautonomia and long Covid? There are two differences: the symptom range, and the symptom severity. In terms of range, my long Covid symptoms include cognitive impairment (I hate the term "brain fog," which sounds vague and vaporous, like the faint disassociative blur of "medicine head" when you take some antihistamines). For me, as an academic, this has been the worst issue to deal with: the loss of short-term memory makes me lose my train of thought all the time, while the loss of long-term memory means losing words constantly, not being able to remember the names of theories I've been teaching about for years, or book titles or author names or film titles, or the names of my own students or the members of my work and professional colleagues. When I write--I'm doing this right now--I have thesaurus and Google and Wikipedia tabs open at all times to use to retrieve lost words--plus articles and my own old blog posts and emails and a pad of paper with notes, using all of them as mental prosthetics to help me fill in all the holes in my memory. This loss of mental capacity is disabling and scarier than the loss of physical capacity for me. It is, as one of the individuals in the Atlantic article noted, like being concussed.
Then there is the physical exhaustion aspect. Before Covid, my dysautonomia kept me from being able to run at all, but I could walk at a pace typical of folks in my town (if not at the pace of a New Yorker). Now, at almost a year out from catching Covid, I cannot walk more than 10 steps at a typical Midwestern walking pace. I have to amble very slowly, pausing every 20 or 30 seconds. My family of origin and a physical therapist and a clinic nurse have all told me I have become deconditioned and obviously need to exercise more and harder, and just pick up my walking pace. I cannot do it, any more than I could run when living with just my congenital dysautonomia! My legs burn as if I'd been running up a hill. Trying to walk faster than a snail's pace means I will arrive at my classroom too exhausted to lecture. Mind you, as someone with EDS I have torn ligaments my whole life, and I'm familiar with the routine of building back strength that every PT course involves. As someone dysautonomic, I have always been behind on these expected recovery schedules, and eternally treated by physical therapists as rather disappointing and probably lazy, but I have indeed always worked at my recoveries and got there eventually, if months behind the schedule set for me. But if a PT set a 2-month recovery window after tearing a knee ligament, and it used to take me 4 months to reach that recovery, now it would probably take me 6, because I have so little stamina.
Some of that is surely due to my poor oxygenation. Before Covid, my oxygenation was around 96%. A week and a half into my Covid case, it was down in the lower 80s. And today, it is in the low 90s. Better, but not great. I have trouble catching my breath with any exertion, and a single flight of steps has me panting like I just ran up a bunch of flights.
As we can see, we can't just talk about the different range of symptoms I experience--we have to talk about their severity over time. I have had dysautonomia my whole life, and it was predictable over the long run, if unpredictable when looking at a how much energy I'd have on a single day. I knew my symptoms and had lifelong coping strategies for dealing with them. I might have to think about things my abled friends didn't, and that could be quite annoying, but it wasn't scary because it was comprehensible and just there, just like my lax hypermobile joints were there.
But long Covid starts with a bang with the acute infection, and then you start to get better--but that recovery curve slows. So for example, I lost my sense of smell completely for just a couple of weeks. Then it started to come back online with the really weird experience in my case of the whole world smelling strongly of vinegary ketchup for two weeks. Then the range of things I could smell expanded, and the sense of being in a room slathered with ketchup on every surface faded. Today, a year out? The occasional whiff of phantom ketchup, and a moderate range of scent detection, but there are many things I still apparently don't smell, and often food has little flavor. I feel like my sense of smell is continuing to improve a little bit over time, but the recovery curve has been asymptotic. For my cognition issues, the first three months I was in terrible shape. I was able to move my in-person teaching online, but it was taking me hours to grade student work because I'd forget what they said two sentences ago in an essay, and writing feedback was agonizingly slow as I had to talk around lost words into Google searches to find words I could not remember in every single sentence I wrote. Now a year out, I feel like I'm close to 2/3 recovered, but additional progress is again asymptotic and slowing to tiny increments.
And that is the thing about long Covid: it is like so many acquired disabilities. It hits you, and a predictable life is suddenly altered. This raises a series of issues: not knowing how much will you recover; not knowing the time frame of that recovery; and having to acquire new accommodations and adapt to new limitations. Those all cause stress and anxiety. And then there is the social component of having to be seen in a new light as disabled, or as additionally disabled in a new way.
When a person who was abled suddenly becomes disabled, relations between them and long-disabled or otherwise marginalized people can be strained. The abled person who suddenly acquires a disability typically goes through the classic stages of mourning ("Denial Anger Bargaining Depression Acceptance, please hold!"). This is understandable, but can alienate people who have been disabled for all or most of their lives, who take the disability rights perspective that their bodies and abilities are central things that define them as who they are, and cringe at their capacities being described by a fellow-traveler as making a person and their life lesser, tragic, intolerable.
I've also seen newly-disabled people seriously get on the nerves of people who are marginalized along other axes of oppression. As I pointed out earlier, many marginalized groups of people experience doctors treating them poorly, dismissing their symptoms, failing to order adequate tests, giving them generic judgmental advice to just exercise and eat better and lose weight and telling them no, they are not going to get any meds or a temporary disability parking sticker just because they "feel tired." If you are, say, a trans woman and/or a Black woman who has been one of a vast chorus of voices crying out about the terribly dismissive and inadequate medical care they and others like them experience, and then a person with long Covid expresses utter shock and disbelief that their LC symptoms aren't being taken seriously. . . well it can sound like the person who is newly disabled never believed them when they said this is what happens to marginalized people encountering the medical profession. Which could be totally inaccurate--perhaps the newly disabled person believed it happened to others and was deeply concerned and actually did try to take action on the issue, but just hadn't ever experienced it personally and is expressing shock at that. But it also could be accurate.
Anyway, at the start of this long ramble (we long Covid folks do need a place to talk about this stuff), what do I have to say about my experiences of long Covid and congenital dysautonomia? First, the lack of energy, exercise intolerance, and post-exertional malaise of long Covid are very similar to my congenital dysautonomic symptoms. Long Covid made those aspects of my dysautonomia worse. Whether I'd have had a better recovery if I didn't go into Covid with dysautonomia I cannot be sure, but I strongly suspect that to be the case.
Secondly, my congenital dysautonomia causes issues for me that long Covid did not affect at all. For example, my dysautonomia makes me have trouble regulating my body temperature. I go out in the sun, it zooms up to 103 F. I lurch into a chilly store with the AC blasting, and my body temperature plunges right down to 94. This has not changed at all since getting Covid. Conversely, there are long Covid symptoms that I never experienced before, like the loss of my sense of smell--the recovery of which is as incomplete and taking as long as my recovery from the cognitive and energy impairments. So the two syndromes are distinctive.
Thirdly--I have found long Covid distressing, but aside from the cognitive effects, it wasn't a shock to me, and while it has made my life more difficult, I have nevertheless mostly taken it in stride. I was disabled. I was worried that Covid would exacerbate this. I was correct, and it did. Nobody has ever accommodated my dysautonomia, and that hasn't changed. I was anxious as my body has fallen apart more and more as a 60-year-old with EDS about my ability to keep managing a workplace that has done little if anything to accommodate me. Now I'm in worse shape, but it's not like being anxious about being able to put one foot in front of the other to make it through my workdays is new. I'm substantially more anxious about the constricting of trans rights, because that's something that was actually improving, and now we're back to feeling unsafe.
In the end, I am impressed by the perseverance that so many folks, including myself, continue to exhibit under difficult circumstances. We are having to deal with a lot, and we are not getting the respect or support we deserve. I hesitate to use the word "resilience," because, like "wellness," it's become one of those buzzwords used to slap a happy face sticker over our being forced by rapacious capitalists to produce more and more profit for them and receiving ever-growing precarity in return. To the extent that we do have resilient energy beyond that needed for basic survival, I believe it should be put into fighting for justice for ourselves and our fellow travelers. But when we don't have that energy, there's still pride to take in surviving another day. And maybe spending all of a Saturday night slowly writing out a perhaps-overlong MetaFilter post about the experience. . .
posted by DrMew at 11:25 PM on July 29, 2023 [56 favorites]
Flagged as fantastic, DrMew. Thank you for sharing your perspective, which was thoughtful, nuanced, and in no way too long. This thread has been an educational as well as painful read. Thank you for this post, OP, and thanks to those of you who have commented. Your raw honesty is appreciated. Thank you for sharing. I am so sorry we live in a world that compounds suffering by judging disabled and additionally marginalized individuals precisely because they are disabled and otherwise marginalized. I guess things could be more fucked up but itās hard to imagine how. Sending virtual hugs to anyone who wants em.
posted by Bella Donna at 1:07 AM on July 30, 2023 [4 favorites]
posted by Bella Donna at 1:07 AM on July 30, 2023 [4 favorites]
Yes, seconded. Thank you for giving me so much to think about.
posted by The corpse in the library at 6:43 AM on July 30, 2023 [3 favorites]
posted by The corpse in the library at 6:43 AM on July 30, 2023 [3 favorites]
That headline about "shattering a person" is on the money. It's so incredibly distorting to the sense of self, to become a person who not only can't do things but can't accurately predict what they're able to do. It feels like it's a foundation of being a decent human being in society that you can say "I will do this thing" and then be trusted to actually do it. But with Long Covid that's not possible. I might be able to get out of bed. Or I might not. I might be able to fill in this form tomorrow... Who knows!
Another commonly understood thing for most people is that one should want to earn one's keep, or to do a fair share of housework, to have hobbies, or to spend time with friends or get out of bed. But if you have bad Long Covid you really have to stop wanting those things, because trying to achieve them actively harms you. It's not just that I can't do those things. It's that I CAN attempt those things. I could go for a walk right now or hop on a call or microwave my own dinner. Then I'd crash horribly two days later and likely lose the amount of function I still have.
Rewiring your own brain to try and not want to earn money, not want to help around the house or get out of bed... That's soul-destroying in an almost literal sense.
posted by quacks like a duck at 10:37 AM on July 30, 2023 [14 favorites]
Another commonly understood thing for most people is that one should want to earn one's keep, or to do a fair share of housework, to have hobbies, or to spend time with friends or get out of bed. But if you have bad Long Covid you really have to stop wanting those things, because trying to achieve them actively harms you. It's not just that I can't do those things. It's that I CAN attempt those things. I could go for a walk right now or hop on a call or microwave my own dinner. Then I'd crash horribly two days later and likely lose the amount of function I still have.
Rewiring your own brain to try and not want to earn money, not want to help around the house or get out of bed... That's soul-destroying in an almost literal sense.
posted by quacks like a duck at 10:37 AM on July 30, 2023 [14 favorites]
DrMew, thank you so much for that amazing comment. I know (and knew) you are not getting the respect or support we deserve, but for what little it's worth, you have my respect, and what little support I can offer by working for better and more respectful health care and wellness care for all. I am immensely grateful for all your contributions to MetaFilter, and I will do what I can to support genuinely helpful accommodations and care for you and everyone struggling with health issues or discrimination.
Thank you for sharing your experiences with us.
posted by kristi at 11:05 AM on July 30, 2023 [3 favorites]
Thank you for sharing your experiences with us.
posted by kristi at 11:05 AM on July 30, 2023 [3 favorites]
I have MS, and the fatigue makes you feel like you are a rubber glove filled with wet sand, just heavy and slack. Your mind is fuzzy and everything takes so much effort it hurts. Even speaking is difficult when it's bad. And it never fully goes away. I miss having friends and a life.
posted by evilcupcakes at 8:12 PM on July 30, 2023 [9 favorites]
posted by evilcupcakes at 8:12 PM on July 30, 2023 [9 favorites]
Mod note: [btw, DrMew's comment has been added to the sidebar]
posted by taz (staff) at 1:29 AM on July 31, 2023 [9 favorites]
posted by taz (staff) at 1:29 AM on July 31, 2023 [9 favorites]
Just wanted to thank everyone for sharing their experiences. I too am going through something similar, but with a rare condition almost no one has heard of and understanding of its effects seems to be non-existent. So many of these experiences you all have shared feel so familiar, and you've managed to put into words and describe things in a way I've been unable to, and I thank you immensely for that. I am so sorry you're dealing with this, in whatever form it's affecting you. It sucks.
posted by cgg at 9:03 AM on August 2, 2023 [7 favorites]
posted by cgg at 9:03 AM on August 2, 2023 [7 favorites]
(I hate the term "brain fog," which sounds vague and vaporous, like the faint disassociative blur of "medicine head" when you take some antihistamines).
To use this as a jumping off point, but not really directed at you in particular:
So the thing is,I think brain fog is entirely descriptive of one of my symptoms, my thinking can get VERY foggy and slow if I've over-done it. Different, and way more intense, but akin to how antihistamines make me feel. But, I generally wouldn't use it to describe word loss, or when I haven't had the energy to process music, or any of the other weird stuff that happens in my head. The first is more like when my parents drastically redid the floor plan of my childhood home. I know there's a room there, but damned if I know how to get to it. The second is like my brain is doing the mental equivalent of jerking your hand back when you touch something hot, it felt like protective response to intense stimulation. The thing is, when I'm talking to people who don't interact with me all that much, a lot of time it's just quicker if I just say I'm having "brain fog". It's a useful shorthand for times when I'm not thinking my best.
I think that a big part of a problem is that there seems to be clusters of overlapping symptoms that all get clumped together as Long Covid, but have different root causes. Then within that we tend to group all the brain stuff as "brain fog" and all the limited energy stuff as "fatigue", etc. It seems to be shaking out that, however, that even very similar symptoms can have different causes. This can make conversations very difficult even among people with Long Covid, let alone people with similar presenting conditions. For example: I very much do not have POTS, but I do have several of the symptoms that are associated with it. I have definitely gotten lectured by well meaning people about things I can do to help with my POTS. No amount of protesting that I don't have POTS, have been tested for POTS, and have tried those things any way, will avoid this lecture. I totally get the impulse to map whatever condition people have experience with onto Long Covid. Sometimes that can be useful, other times less so. Either way, I try and recognize when it's coming from a place of lived experience and not "have you tried X? My cousin with a completely different thing tried X and it totally helped".
I would ask people without Long Covid continue to be thoughtful about how they interact with this topic. I can only imagine the frustration that comes with seeing this come along and get attention while other people with similarly presenting conditions got ignored, for years and decades at a time. The thing is, none of us are having Long Covid AT you, you know? My chronic condition is not about your chronic condition. And yeah, some of us are going to put things badly, and step in it. That's true of all folks in stressful situations.
I'm gonna be honest, here, I had to stop participating in what was feeling like a great bit of solidarity building because it felt like it stopped being about that and started being about one detail of what one person was feeling. I do have to say thank you to DrMew, for bringing it all back together, and everyone who's spoken up in support. I don't mean to imply that you must have experience with Long Covid, specifically, to comment. Or even that things need to pass a "Gygesringtone approved" test, I'm fine leaving when the conversation diverges from what I need. Just like, please consider that we're all being vulnerable and are reaching out for connections and support here, and we're relatively new at this.
I've had Long Covid just about as long as is possible for someone living in North America and I still constantly doubt myself, and if I even belong in these kinds of discussions, and aren't I just being lazy and dramatic. I lost the ability to form long term memories for an entire year and a half of my life, and I still constantly worry that I'm not one of the ones who have the BAD Long Covid, or a real long term condition, and that I shouldn't be complaining or comparing myself to the people who are "really sick". So it was a gut punch to read some of the responses up above. Which, hey, could be me misreading tone, and is also likely me making someone else's reaction to something about myself. I don't know, I'm not going to reread those comments to try and parse it: hand->flame-> etc., but I'm reminding myself to assume they were not meant to hurt.
I guess what I'm really saying is, chronic illnesses suck. It sucks when it's Long Covid, it sucks when it's something else. It sucks to not be believed. It sucks to not believe yourself. It's less sucky when we can find common ground, and less sucky when we give ourselves permission to admit it sucks. It's more sucky when we make assumptions about other people and when other people make assumptions about us. There's no real other point than even while trying to pick the options that reduce the difficulty of these conversations, it can be an effort, and grace should be extended all around.
posted by Gygesringtone at 7:57 AM on August 6, 2023 [6 favorites]
To use this as a jumping off point, but not really directed at you in particular:
So the thing is,I think brain fog is entirely descriptive of one of my symptoms, my thinking can get VERY foggy and slow if I've over-done it. Different, and way more intense, but akin to how antihistamines make me feel. But, I generally wouldn't use it to describe word loss, or when I haven't had the energy to process music, or any of the other weird stuff that happens in my head. The first is more like when my parents drastically redid the floor plan of my childhood home. I know there's a room there, but damned if I know how to get to it. The second is like my brain is doing the mental equivalent of jerking your hand back when you touch something hot, it felt like protective response to intense stimulation. The thing is, when I'm talking to people who don't interact with me all that much, a lot of time it's just quicker if I just say I'm having "brain fog". It's a useful shorthand for times when I'm not thinking my best.
I think that a big part of a problem is that there seems to be clusters of overlapping symptoms that all get clumped together as Long Covid, but have different root causes. Then within that we tend to group all the brain stuff as "brain fog" and all the limited energy stuff as "fatigue", etc. It seems to be shaking out that, however, that even very similar symptoms can have different causes. This can make conversations very difficult even among people with Long Covid, let alone people with similar presenting conditions. For example: I very much do not have POTS, but I do have several of the symptoms that are associated with it. I have definitely gotten lectured by well meaning people about things I can do to help with my POTS. No amount of protesting that I don't have POTS, have been tested for POTS, and have tried those things any way, will avoid this lecture. I totally get the impulse to map whatever condition people have experience with onto Long Covid. Sometimes that can be useful, other times less so. Either way, I try and recognize when it's coming from a place of lived experience and not "have you tried X? My cousin with a completely different thing tried X and it totally helped".
I would ask people without Long Covid continue to be thoughtful about how they interact with this topic. I can only imagine the frustration that comes with seeing this come along and get attention while other people with similarly presenting conditions got ignored, for years and decades at a time. The thing is, none of us are having Long Covid AT you, you know? My chronic condition is not about your chronic condition. And yeah, some of us are going to put things badly, and step in it. That's true of all folks in stressful situations.
I'm gonna be honest, here, I had to stop participating in what was feeling like a great bit of solidarity building because it felt like it stopped being about that and started being about one detail of what one person was feeling. I do have to say thank you to DrMew, for bringing it all back together, and everyone who's spoken up in support. I don't mean to imply that you must have experience with Long Covid, specifically, to comment. Or even that things need to pass a "Gygesringtone approved" test, I'm fine leaving when the conversation diverges from what I need. Just like, please consider that we're all being vulnerable and are reaching out for connections and support here, and we're relatively new at this.
I've had Long Covid just about as long as is possible for someone living in North America and I still constantly doubt myself, and if I even belong in these kinds of discussions, and aren't I just being lazy and dramatic. I lost the ability to form long term memories for an entire year and a half of my life, and I still constantly worry that I'm not one of the ones who have the BAD Long Covid, or a real long term condition, and that I shouldn't be complaining or comparing myself to the people who are "really sick". So it was a gut punch to read some of the responses up above. Which, hey, could be me misreading tone, and is also likely me making someone else's reaction to something about myself. I don't know, I'm not going to reread those comments to try and parse it: hand->flame-> etc., but I'm reminding myself to assume they were not meant to hurt.
I guess what I'm really saying is, chronic illnesses suck. It sucks when it's Long Covid, it sucks when it's something else. It sucks to not be believed. It sucks to not believe yourself. It's less sucky when we can find common ground, and less sucky when we give ourselves permission to admit it sucks. It's more sucky when we make assumptions about other people and when other people make assumptions about us. There's no real other point than even while trying to pick the options that reduce the difficulty of these conversations, it can be an effort, and grace should be extended all around.
posted by Gygesringtone at 7:57 AM on August 6, 2023 [6 favorites]
I apologize. That was very much my fault, and I agree. I got really fixated and then tried to over explain rather than just dropping it. I feel badly about it, especially because I fundamentally agree that long covid is obviously and materially distinct from plain me/cfs and there is just so much that we donāt know. Itās a mass disabling event, and even though it has analogs to things that have happened in the past doesnāt make it the same.
posted by Bottlecap at 10:04 PM on August 6, 2023 [2 favorites]
posted by Bottlecap at 10:04 PM on August 6, 2023 [2 favorites]
Thought this thread was a good place to put this well-written, super sad op-ed by novelist Madeline Miller about life with Long Covid
So how long am I going to do this? Until indoor air is safe for all, until vaccines prevent transmission, until thereās a cure for long covid. Until Iām not risking my familyās future on a grocery run. Because the truth is that however immortal we feel, we are all just one infection away from a new life.posted by hydropsyche at 5:33 PM on August 10, 2023 [3 favorites]
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posted by I-Write-Essays at 6:11 AM on July 28, 2023