It's heartbreaking to me the way you keep deriding the part you wrote after you got covid. It's excellent writing. Sure, it's in a different style from the more philosophical, analytical first part, but it's urgent and direct in a way that really compliments the rest of the piece.
As a veteran of the Extremely Rare Disease support forums, I have to tell you they aren't really great places for anxious minds either. Right after diagnosis, I was talking to a friend who has both mental health issues as well as an extremely rare physical disease. While neither of our diseases are well-known enough to have attracted hypochondriacs seeking homes, she still warned me against "sticking around in online groups" and that they "can be helpful for a little... but take resources, vet them well, and leave" (or something to that effect).
I was honestly kind of shocked when she said that, because I hadn't really clocked the fact that no matter the ailment or problem, the people who stick around posting in these forums are the people who place the most importance on having the disease. Incidentally neither of our diseases in this case are curable, so it's not fully a matter of those who recover leaving. But the same effect as you describe, with algorithms amplifying the voices of the people in the worst crises and are the most disabled and therefore have the most time at home ruminating about their disease and posting about it. (I feel rude for saying that; there's nothing inherently wrong with posting a lot or having a higher degree of disability, or both, and like you I've benefited from the disability activist community, but there's a strange effect in forums of the people suffering the most driving the conversation with zero guardrails).
I think it's not just algorithmic. I remember when I first started using, idk, social media of not just strictly people I know (e.g. twitter, reddit) and I was shocked that it seemed that every single person in the world had terribly abusive parents. It took me a long time to realize that this is mostly simply a result of the fact that it's incredibly rude to respond to some vent post with "well actually my dad is pretty cool and I like him." I saw the same thing in the Rare Disease Forum; only the sickest people with the most surgeries would comment, and no one would jump in and announce that today all their [symptoms] were pretty good. I ultimately left the forum and hadn't checked it for a year... and it turns out I was actually misdiagnosed anyway. I have diagnosed anxiety, but my thought spirals latched onto other things than the forum I guess. I really could not say why.
For what it's worth, I agree with you about the libertarian internet being harmful. But I have no idea how to strike a balance between the kinds of secret venting that DOES need to take place, and not sucking in people to an endless... I am not as good as words as you are... sadness and fear whirlpool?
tyu for sharing this♡ it mustve been hard to word this and still be fair to everyone. even without hypochondria the LC reddit and the twitter algo are a nightmare, this essay makes me feel a little less mad
I am a life long hypochondriac and I suffer from Long Covid since summer 2022. Having Long Covid is hard , but being hypochondriac makes it much more difficult to navigate and manage it. I am also on X, Reddit and various Facebook groups. I started with 6 months into Long Covid. A lot of new symptoms started during these years and it’s impossible to distinguish between LC and symptoms through ongoing psychological stress as a hypochondriac. As a hypochondriac I usually go to a doctor , he runs tests and declares that everything is fine. Everything was fine until the next episode started. With long covid we don’t have a biomarker and we don’t know the long term effects - as a hypochondriac this hits me double.
Thank you so much for this. I’ve had self-diagnosed hypochondria for a few years now, ‘properly’ diagnosed anxiety for 7, chronic health issues for… 5? 7?; the whole thing is intersecting obviously, and I find it infuriating trying to differentiate what’s ‘just’ in my head from a physical problem that might, you know, kill me. It’s a tough road as a scientist who implicitly prefers qualified medical advice when there literally is none.
It jumped out at me that your hypochondria started at puberty, as mine started at perimenopause; like the hormones go wonky and no one knows why and doctors can’t help, so of course the brain flips out.
My point being, I really appreciate your thoughts on the intersection of chronic illness with anxiety; I haven’t seen the like before, perhaps because I intentionally limited my Reddit / googling, entirely bc of what you’ve said better here. And I’m feeling supremely lucky now, because I will lose my actual shit for months over a bruise or a cough or a 0.1 blood reading above normal, but I’ve had Covid twice and somehow never gotten anxious about it, like at all. The brain is weird! And acceptance of that is so very hard.
My presentation post covid was similar to yours regarding brain fog (and extreme anger over nothing) and shortness of breath. I went on a lot of inhalers for my asthma and gave it time, and I felt more like my old self after about a year. Granted, my old self has had MECFS for 11 years, so that part is still doing badly. But there's hope for your brain, I think.
Thank you for this essay, which is wonderful. I have been something in the neighbourhood of hypochondriac since I hit double digits (various diagnoses, like anxiety, and motions towards diagnoses whose procedures I never followed through, like OCD, followed). I hope you can forgive a rambling response.
Many of my experiences in 2020 were, I think, similar. I would not say that the world came closer to my way of thinking about health: I was noticeably much more cautious than my friends and family, and sometimes reacted to perceived health risks (which was usually also real risk) in ways that were clearly pathological. But I found that I was briefly able to make some part of myself—the part that led me to fit check my mask, to shut myself in my room away from housemates or family when I was symptomatic, to crack open windows and weigh the density of attendees when deciding whether to attend an event—understood more widely than had been possible for the preceding years of my life.
I found it difficult to adjust to the 'new normal'. I do not mean that I struggled to abandon the behavioural changes I had made beginning in 2020, because I mostly did not want or try to. I mean that I found it distressing that people who had grudgingly or zealously conformed to norms that arose in 2020 abandoned these norms without, to my eye, any obvious significant change to the evidence that underwrote them. I found it hard to accept that the year in which I had felt most able to voice feelings about health was increasingly one that people were looking back on as a year of madness, to be forgotten or waved away with embarrassment. Given my politics, I should not previously have been going about on the assumption that social norms were strongly rational. Nonetheless, I found it shocking to perceive norms shift and shift back so swiftly and (to my perception) arbitrarily, equally moralised each time.
I still mask on public transportation, in theatres, in supermarkets and shopping centres. I do not eat or drink coffee indoors unless I am meeting someone. I halfheartedly conceal these things, forgoing masking when I am around colleagues or casual friends. I am lucky enough to have never had long covid of any kind.
Briefly, in 2020, I felt more understood. I think I was—but I was also given the opportunity to indulge feelings and fantasies around health that I otherwise would have kept hidden. From 2022 or so, I began to conceal more and more of myself, and I damaged myself in doing so. For a while, I browsed covid subreddits daily, but (although I still think they serve a valuable purpose) abandoned these soon enough for roughly the reasons you pick out in your essay. I withdrew from relationships which were important to me and made me better; I withdrew from much of the world on which I nonetheless ineliminably depend.
I am trying, now, to escape this trap. I do not know how to do so without compromising feelings and convictions about the harmfulness of covid, which I continue to consider rationally supported. To some extent, I will have to do so. But I am trying to reconcile myself more to appearing Crazy in public, and to accepting risk while mitigating it nonetheless.
I am very sorry to hear about your illness. As someone who fears long covid, the approach to treatment/management you express in this essay helps me dispel a feeling of fatalism; and as someone who experiences something in the neighbourhood of hypochondria, I am heartened by the work of its navigation which seems to me to partly constitute this essay. I hope for your health and wish you the best through sickness.
i relate to this post so much… i’ve also ended up in the reddit rabbithole so many times and it always makes me so angry to think about all the possible damage this disease could do to my body, despite my lack of control over catching it. i still sometimes get extremely paranoid about catching covid again because most of the people around me aren’t careful and treat it as if it doesn’t exist anymore (i’ve caught it twice this way actually, which has only added to my frustration), and like you i’ve been a hypochondriac from a young age, so it’s been really rough. i’ve also genuinely developed health problems *due* to my anxiety, which seriously sucks. again, thank you for this post, it made me feel a little less alone :p
If you look at my other posts you will see that I lock my replies on the Nazi website by default because I don’t want nazis in my comments and because I have a right to not be abused in public. The comments are unlocked here and on bluesky. This is a piece about having mental illness and being in such a state where I have done harm to myself out of fear. Support groups can be helpful but they can also be harmful if you suffer from a mental illness like I do. I never found doctors much help either in terms of knowledge of the illness, however I think the message that doctors are actively malicious keeps people from seeking help. One doctor discovered I had anemia and another put me on guanfacine which has helped me immensely. I am also at the long covid clinic at northwestern and also see a neurologist there. I see a physiotherapist for cervical instability and an optometrist for convergence insufficiency. I see a therapist and a psychiatrist for my mental illness. These are separate angles for treating the disease and the doctors largely see them as separate problems which is of course problematic. they may not entirely eradicate the LC but the unpleasant truth of the matter is that I wouldn’t be getting better at all if I didn’t see these doctors. I am privileged for having health insurance that covers most of the costs and I realize not everyone has that luxury.
Meanwhile the long covid advice I got that helped either came from people who knew me personally or from real sources like the sick times and health rising where I learned about HRV-based pacing which I credit with helping me get back into daily life in a safe and sustainable way. Reddit, meanwhile, exposed me, again, a person with mental illness to an endless stream of suicidality and the message that it never gets better. It is fair to say that this is not helpful. I hope you get better soon.
im sorry. i take back what i said. i didnt realize you were struggling. ill be more thorough and thoughtful next time. i hope you find some peace and an improved baseline. again, im sorry and i take accountability for my actions.
I got all my quality info from the sick times and health rising — there is also a book called the long covid survival guide. But also I recommend the recovery stories wherever you can find them. It helps so much to listen to people who are getting better. I think it’s also true that you should just pace yourself and be careful while trying to test your boundaries. For my fatigue I didn’t figure out how that was changing from day to day until I started tracking my heart rate variability instead of my heart rate. I used an app called StressWatch for that. A lot of people say you need to pace and it’s true but the parameters are blind — being able to see the strain on my body vs when I was doing okay was really important for getting out of bed. If I could keep my hrv stable for a few days, that’s how I knew I could push my activity. find objective measures of your progress like that or like keeping a symptom diary.
Thanks for your feedback. My sibling is going through something similar (not long covid, but an obsession over a different perceived illness), and we’re all doing our best to help.
thank you so much for this. it's so rare to read writing that can hold two truths at once. <3
It's heartbreaking to me the way you keep deriding the part you wrote after you got covid. It's excellent writing. Sure, it's in a different style from the more philosophical, analytical first part, but it's urgent and direct in a way that really compliments the rest of the piece.
As a veteran of the Extremely Rare Disease support forums, I have to tell you they aren't really great places for anxious minds either. Right after diagnosis, I was talking to a friend who has both mental health issues as well as an extremely rare physical disease. While neither of our diseases are well-known enough to have attracted hypochondriacs seeking homes, she still warned me against "sticking around in online groups" and that they "can be helpful for a little... but take resources, vet them well, and leave" (or something to that effect).
I was honestly kind of shocked when she said that, because I hadn't really clocked the fact that no matter the ailment or problem, the people who stick around posting in these forums are the people who place the most importance on having the disease. Incidentally neither of our diseases in this case are curable, so it's not fully a matter of those who recover leaving. But the same effect as you describe, with algorithms amplifying the voices of the people in the worst crises and are the most disabled and therefore have the most time at home ruminating about their disease and posting about it. (I feel rude for saying that; there's nothing inherently wrong with posting a lot or having a higher degree of disability, or both, and like you I've benefited from the disability activist community, but there's a strange effect in forums of the people suffering the most driving the conversation with zero guardrails).
I think it's not just algorithmic. I remember when I first started using, idk, social media of not just strictly people I know (e.g. twitter, reddit) and I was shocked that it seemed that every single person in the world had terribly abusive parents. It took me a long time to realize that this is mostly simply a result of the fact that it's incredibly rude to respond to some vent post with "well actually my dad is pretty cool and I like him." I saw the same thing in the Rare Disease Forum; only the sickest people with the most surgeries would comment, and no one would jump in and announce that today all their [symptoms] were pretty good. I ultimately left the forum and hadn't checked it for a year... and it turns out I was actually misdiagnosed anyway. I have diagnosed anxiety, but my thought spirals latched onto other things than the forum I guess. I really could not say why.
For what it's worth, I agree with you about the libertarian internet being harmful. But I have no idea how to strike a balance between the kinds of secret venting that DOES need to take place, and not sucking in people to an endless... I am not as good as words as you are... sadness and fear whirlpool?
Wishing you the best!
tyu for sharing this♡ it mustve been hard to word this and still be fair to everyone. even without hypochondria the LC reddit and the twitter algo are a nightmare, this essay makes me feel a little less mad
I am a life long hypochondriac and I suffer from Long Covid since summer 2022. Having Long Covid is hard , but being hypochondriac makes it much more difficult to navigate and manage it. I am also on X, Reddit and various Facebook groups. I started with 6 months into Long Covid. A lot of new symptoms started during these years and it’s impossible to distinguish between LC and symptoms through ongoing psychological stress as a hypochondriac. As a hypochondriac I usually go to a doctor , he runs tests and declares that everything is fine. Everything was fine until the next episode started. With long covid we don’t have a biomarker and we don’t know the long term effects - as a hypochondriac this hits me double.
Sending hugs.
Thank you so much for this. I’ve had self-diagnosed hypochondria for a few years now, ‘properly’ diagnosed anxiety for 7, chronic health issues for… 5? 7?; the whole thing is intersecting obviously, and I find it infuriating trying to differentiate what’s ‘just’ in my head from a physical problem that might, you know, kill me. It’s a tough road as a scientist who implicitly prefers qualified medical advice when there literally is none.
It jumped out at me that your hypochondria started at puberty, as mine started at perimenopause; like the hormones go wonky and no one knows why and doctors can’t help, so of course the brain flips out.
My point being, I really appreciate your thoughts on the intersection of chronic illness with anxiety; I haven’t seen the like before, perhaps because I intentionally limited my Reddit / googling, entirely bc of what you’ve said better here. And I’m feeling supremely lucky now, because I will lose my actual shit for months over a bruise or a cough or a 0.1 blood reading above normal, but I’ve had Covid twice and somehow never gotten anxious about it, like at all. The brain is weird! And acceptance of that is so very hard.
My presentation post covid was similar to yours regarding brain fog (and extreme anger over nothing) and shortness of breath. I went on a lot of inhalers for my asthma and gave it time, and I felt more like my old self after about a year. Granted, my old self has had MECFS for 11 years, so that part is still doing badly. But there's hope for your brain, I think.
Sending huge love to you Kate. This sounds like a horrendous experience.
Sending healing vibes for your ongoing recovery ❤️🩹
Also your writing is so delightful to read. Xxx
Thank you for this essay, which is wonderful. I have been something in the neighbourhood of hypochondriac since I hit double digits (various diagnoses, like anxiety, and motions towards diagnoses whose procedures I never followed through, like OCD, followed). I hope you can forgive a rambling response.
Many of my experiences in 2020 were, I think, similar. I would not say that the world came closer to my way of thinking about health: I was noticeably much more cautious than my friends and family, and sometimes reacted to perceived health risks (which was usually also real risk) in ways that were clearly pathological. But I found that I was briefly able to make some part of myself—the part that led me to fit check my mask, to shut myself in my room away from housemates or family when I was symptomatic, to crack open windows and weigh the density of attendees when deciding whether to attend an event—understood more widely than had been possible for the preceding years of my life.
I found it difficult to adjust to the 'new normal'. I do not mean that I struggled to abandon the behavioural changes I had made beginning in 2020, because I mostly did not want or try to. I mean that I found it distressing that people who had grudgingly or zealously conformed to norms that arose in 2020 abandoned these norms without, to my eye, any obvious significant change to the evidence that underwrote them. I found it hard to accept that the year in which I had felt most able to voice feelings about health was increasingly one that people were looking back on as a year of madness, to be forgotten or waved away with embarrassment. Given my politics, I should not previously have been going about on the assumption that social norms were strongly rational. Nonetheless, I found it shocking to perceive norms shift and shift back so swiftly and (to my perception) arbitrarily, equally moralised each time.
I still mask on public transportation, in theatres, in supermarkets and shopping centres. I do not eat or drink coffee indoors unless I am meeting someone. I halfheartedly conceal these things, forgoing masking when I am around colleagues or casual friends. I am lucky enough to have never had long covid of any kind.
Briefly, in 2020, I felt more understood. I think I was—but I was also given the opportunity to indulge feelings and fantasies around health that I otherwise would have kept hidden. From 2022 or so, I began to conceal more and more of myself, and I damaged myself in doing so. For a while, I browsed covid subreddits daily, but (although I still think they serve a valuable purpose) abandoned these soon enough for roughly the reasons you pick out in your essay. I withdrew from relationships which were important to me and made me better; I withdrew from much of the world on which I nonetheless ineliminably depend.
I am trying, now, to escape this trap. I do not know how to do so without compromising feelings and convictions about the harmfulness of covid, which I continue to consider rationally supported. To some extent, I will have to do so. But I am trying to reconcile myself more to appearing Crazy in public, and to accepting risk while mitigating it nonetheless.
I am very sorry to hear about your illness. As someone who fears long covid, the approach to treatment/management you express in this essay helps me dispel a feeling of fatalism; and as someone who experiences something in the neighbourhood of hypochondria, I am heartened by the work of its navigation which seems to me to partly constitute this essay. I hope for your health and wish you the best through sickness.
Thank you so much for sharing this. I recognise so much of what you write of, especially the neurological aspect of things.
This was a life-affirming read and I deeply appreciate you putting this down, difficult as it must have been. I wish you the best ♥️
i relate to this post so much… i’ve also ended up in the reddit rabbithole so many times and it always makes me so angry to think about all the possible damage this disease could do to my body, despite my lack of control over catching it. i still sometimes get extremely paranoid about catching covid again because most of the people around me aren’t careful and treat it as if it doesn’t exist anymore (i’ve caught it twice this way actually, which has only added to my frustration), and like you i’ve been a hypochondriac from a young age, so it’s been really rough. i’ve also genuinely developed health problems *due* to my anxiety, which seriously sucks. again, thank you for this post, it made me feel a little less alone :p
have you read Italo Svevo's novel Confesions of Zeno? the protagonist is a somatizer/'malade imaginaire'. you may enjoy it.
I don't trust people who do this. they write something that is wrong. and limit comments on twitter to avoid critique.
🚩🚩🚩🚩🚩🚩🚩🚩🚩🚩🚩
Regarding Long Covid, Reddit is actually savings lives, because most doctors don't know shit (including my original GP).
If you look at my other posts you will see that I lock my replies on the Nazi website by default because I don’t want nazis in my comments and because I have a right to not be abused in public. The comments are unlocked here and on bluesky. This is a piece about having mental illness and being in such a state where I have done harm to myself out of fear. Support groups can be helpful but they can also be harmful if you suffer from a mental illness like I do. I never found doctors much help either in terms of knowledge of the illness, however I think the message that doctors are actively malicious keeps people from seeking help. One doctor discovered I had anemia and another put me on guanfacine which has helped me immensely. I am also at the long covid clinic at northwestern and also see a neurologist there. I see a physiotherapist for cervical instability and an optometrist for convergence insufficiency. I see a therapist and a psychiatrist for my mental illness. These are separate angles for treating the disease and the doctors largely see them as separate problems which is of course problematic. they may not entirely eradicate the LC but the unpleasant truth of the matter is that I wouldn’t be getting better at all if I didn’t see these doctors. I am privileged for having health insurance that covers most of the costs and I realize not everyone has that luxury.
Meanwhile the long covid advice I got that helped either came from people who knew me personally or from real sources like the sick times and health rising where I learned about HRV-based pacing which I credit with helping me get back into daily life in a safe and sustainable way. Reddit, meanwhile, exposed me, again, a person with mental illness to an endless stream of suicidality and the message that it never gets better. It is fair to say that this is not helpful. I hope you get better soon.
im sorry. i take back what i said. i didnt realize you were struggling. ill be more thorough and thoughtful next time. i hope you find some peace and an improved baseline. again, im sorry and i take accountability for my actions.
do you have any advice for someone that has fully fallen down the Reddit pipeline (if you go outside, you’ll become worse)?
I got all my quality info from the sick times and health rising — there is also a book called the long covid survival guide. But also I recommend the recovery stories wherever you can find them. It helps so much to listen to people who are getting better. I think it’s also true that you should just pace yourself and be careful while trying to test your boundaries. For my fatigue I didn’t figure out how that was changing from day to day until I started tracking my heart rate variability instead of my heart rate. I used an app called StressWatch for that. A lot of people say you need to pace and it’s true but the parameters are blind — being able to see the strain on my body vs when I was doing okay was really important for getting out of bed. If I could keep my hrv stable for a few days, that’s how I knew I could push my activity. find objective measures of your progress like that or like keeping a symptom diary.
Thanks for your feedback. My sibling is going through something similar (not long covid, but an obsession over a different perceived illness), and we’re all doing our best to help.