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It's going to be tricky sorting out "long COVID" cases vs "general health anxiety"

74 replies

Kokeshi123 · 31/08/2020 03:58

It's a well-known fact that viruses can cause long-term sequelae for some peopleincluding flu, and COVID19 appears to have mortality and morbidity stats that are several times worse than seasonal influenza. So it's inevitable that we are going to see plenty of people with "long COVID"-health issues that persist after recovering from COVID19.

And yet.

There are several people on my SM who are talking about the long-term health repercussions they believe they are suffering as a result of COVID19. Three of them are.... how can I put this without seeming "mean"? They have considerable form for diagnosing themselves with pretty much everything. They have all kinds of can't-eat foods based on allergies and intolerance, but it's often not too clear what their symptoms are and sometimes the allergy/food intolerance disappears for a bit when there's something they really want to eat. One has diagnosed herself with celiac disease and now only eats self-prepared food which she carries around with her in tupperware boxes. I said to her, if you believe you have CD it is very important to go to a doctor and get a formal diagnosis, but she resisted on the grounds that "doctors often fail to spot these things, I don't want to waste my time." All the above people seem to have the most terrible luck with doctors, who are continually failing to diagnose them with various complaints that they insist they absolutely do have. They all have a very "narrative" style of thinking, where everything was caused by something else. If their child has a behavioral issue or a stutter or what have you, they always insist it all started after that vaccine or that ear infection etc.

When I've met people like this, I start off my feeling concerned and sympathetic. And then after a while I get a bit cynical about people who always have something wrong with them that the doctors invariably "aren't taking seriously" etc. And now, needless to say, the long COVID redux is starting among the three people in question, with said people insisting that all kinds of symptoms that they now believe they have, have been caused by their infection. Two of the three people were never diagnosed formally with COVID19 and have not had any serious illness, but "asymptomatic infections are also causing long-term damage, you know!"

And it's all so tricky. Because I don't doubt that long-term damage caused by COVID19 can be real and I don't think it's just been made up. But how are we going to sort out who is a genuine case, who is faking it, who is just suffering generalized anxiety about their health and so on? Particularly since the disease is often asymptomatic and antibody tests do not appear to be a reliable guide as to who has actually had the disease and who has not. And since some of the symptoms being suggested as being part of "long COVID" (anxiety, sleep disorders) are things which could equally be caused by the social upheaval resulting from the pandemic and the response to it.

I do think that this one is going to run and run-ie, in years to come, we will be seeing claims linking COID19 to all kinds of things that people will suffer in their lifetimesfrom ASD in children to heart attacks--and it's going to be really really hard to sort out what is going on and to what extent COVID19 is really responsible for any of this. It could become another source of friction and resentment in our society.

Just pondering, and wondering what is going to happen with this, going forward.

OP posts:
ramblingsonthego · 31/08/2020 09:59

I got ME after a bout of the flu. I am in remission at the moment but at its worst I literally struggled through a day at work, got home at about 4pm and slept through till the morning (but totally unrefreshing sleep) and that was on repeat till the weekend where I would stay in bed most of the weekend.

I eventually got diagnosed by the consultant at the ME clinic after 2 years of this and put on a treatment path. I have to follow it strictly or I relapse very quickly. I do worry about catching covid19 incase it causes a massive relapse. This is not health anxiety this is just reality!

Haenow · 31/08/2020 11:54

@SoManyActivities

I totally agree with you. And healthy anxiety can be incredibly powerful. Look at the 'my Covid lungs' threads. Have all of the people on that thread even had a positive test?
@SoManyActivities

Seems quite harsh to talk about people on another thread especially as they made read this. And, no, I don’t have long haul Covid or any lingering symptoms after my presumed infection.

stayathomegardener · 31/08/2020 12:03

I agree with @Haenow, I'm reading this judging you for judging people like me.

I don't think it needs to be tricky sorting out post covid/anxiety. I would hope patients could avoid labels and be treated as individuals as needs require.

Move on, find new friends and enjoy your good health.

sally067 · 31/08/2020 13:40

My boss has health anxiety and it's awful for the people around her. I've been on Zoom calls with her watching her wash down her shopping delivery and quarantining her post, etc. She has a go at me for not doing the same, I can't tell her what I got up to at weekends anymore because she will have a go at me for seeing my friends or just doing something normal.

Unfortunately being fairly senior in HR she has decreed the rules for returning to the office and basically most can't. She has ruled things like not allowing those who use public transport to return (despite the fact they will probably use it at weekends) which rules out 80-90% of people. No use of the work kitchen, bring your own lunch into work so you don't have to pop out, etc etc.

cologne4711 · 31/08/2020 15:50

I just saw this blog post via Twitter which is very informative and very concerning: www.technollama.co.uk/diary-of-a-long-covid-patient

GabriellaMontez · 31/08/2020 16:21

Unpopular but true. (Not denying the existence of long term problems following covid)

For example as Shortness Of Breath fits both Covid and anxiety. Obvs, for the person experiencing they're equally real. But it would be important to recognise which was the cause.

Blerg · 31/08/2020 18:31

I agree with you about people wanting to be in on stuff, and it being very hard to say.

However, for lots of people on the thread mentioned on here they originally had symptoms before you could get a test and with antibody tests being unreliable they might never know. It just seems unfair to say most haven’t had a test when for lots of people they couldn’t.

We all seemed to have it in March and my DH suffered long Covid for months. Compared to me own experience tbh I would have struggled to believe it if I hadn’t seen it. Also he is absolutely not the sort to even pay attention to most illnesses and always healthy and robust (more so than I).

TellYourCatISaidHi · 31/08/2020 18:35

I have actual diagnosed HA (and emetophobia since childhood) but generally I’ve not been too worried about Covid. I don’t know why I’ve been quite rational and sensible about it when I panic about absolutely everything else!

Pixel7777 · 31/08/2020 19:13

Thing is, our mental and physical health is so interlinked that people could be having both...symptoms after covid and anxiety brought on by it too...or either...yes it is complex I guess.

Holyrivolli · 31/08/2020 19:50

It’s an interesting theory and one that I think will be explored a lot in years to come. There do appear to be a huge amount of women on this site and in general who are very anxious about pretty much everything - health anxiety being one of the key areas.

Covid is a perfect subject for them to leap on to. In days gone by, they’d have self-diagnosed with ME, CFS or fibromyalgia. Now Long Covid is perfect - multiple nondescript symptoms, many relying on self reporting by people who in many cases have never been formally diagnosed with covid.

duffeldaisy · 31/08/2020 20:10

The two people I know who have long haul Covid are, oddly, two of the fittest, healthiest people, the kind who are full of energy and drive.

They’re a couple, one has it worse than the other, and while they’re back to work p/t, after 8 weeks they’re both exhausted after half a day, have random symptoms like headaches, tiredness, and aches and pains every so often. Neither can exercise yet and one still gets tired climbing stairs.
They’re carrying on the best they can, but the only feeling I get from them is frustration rather than any self-pity or hypochondria.
This is a real thing, and I guess people like them, who are normally get-up-and-go types will get more sympathy for the same condition from the OP than someone who is more complainy. It’s a horrible thing though, however people react. And I think anxiety is also meant to be one of the symptoms.

anduin · 31/08/2020 21:25

@Kokeshi123

It's a well-known fact that viruses can cause long-term sequelae for some peopleincluding flu, and COVID19 appears to have mortality and morbidity stats that are several times worse than seasonal influenza. So it's inevitable that we are going to see plenty of people with "long COVID"-health issues that persist after recovering from COVID19.

And yet.

There are several people on my SM who are talking about the long-term health repercussions they believe they are suffering as a result of COVID19. Three of them are.... how can I put this without seeming "mean"? They have considerable form for diagnosing themselves with pretty much everything. They have all kinds of can't-eat foods based on allergies and intolerance, but it's often not too clear what their symptoms are and sometimes the allergy/food intolerance disappears for a bit when there's something they really want to eat. One has diagnosed herself with celiac disease and now only eats self-prepared food which she carries around with her in tupperware boxes. I said to her, if you believe you have CD it is very important to go to a doctor and get a formal diagnosis, but she resisted on the grounds that "doctors often fail to spot these things, I don't want to waste my time." All the above people seem to have the most terrible luck with doctors, who are continually failing to diagnose them with various complaints that they insist they absolutely do have. They all have a very "narrative" style of thinking, where everything was caused by something else. If their child has a behavioral issue or a stutter or what have you, they always insist it all started after that vaccine or that ear infection etc.

When I've met people like this, I start off my feeling concerned and sympathetic. And then after a while I get a bit cynical about people who always have something wrong with them that the doctors invariably "aren't taking seriously" etc. And now, needless to say, the long COVID redux is starting among the three people in question, with said people insisting that all kinds of symptoms that they now believe they have, have been caused by their infection. Two of the three people were never diagnosed formally with COVID19 and have not had any serious illness, but "asymptomatic infections are also causing long-term damage, you know!"

And it's all so tricky. Because I don't doubt that long-term damage caused by COVID19 can be real and I don't think it's just been made up. But how are we going to sort out who is a genuine case, who is faking it, who is just suffering generalized anxiety about their health and so on? Particularly since the disease is often asymptomatic and antibody tests do not appear to be a reliable guide as to who has actually had the disease and who has not. And since some of the symptoms being suggested as being part of "long COVID" (anxiety, sleep disorders) are things which could equally be caused by the social upheaval resulting from the pandemic and the response to it.

I do think that this one is going to run and run-ie, in years to come, we will be seeing claims linking COID19 to all kinds of things that people will suffer in their lifetimesfrom ASD in children to heart attacks--and it's going to be really really hard to sort out what is going on and to what extent COVID19 is really responsible for any of this. It could become another source of friction and resentment in our society.

Just pondering, and wondering what is going to happen with this, going forward.

I had never had any health issues, my last two visits to the GP in the last 10 years were due to broken bones due to my active life. I'm not an anxious person, and I hate doctors and hospitals.

I've been sicker for the last 6 months than I have ever been in my life, this crap messes up with your insides, your nervous system, your gut.

Sorry I didn't get tested back in March, there were no tests to be had. I'm waiting for a reliable antibody test.

Holyrivolli · 01/09/2020 00:15

So how do you know @anduin that you have long covid if you haven’t tested positive? Your mention of a reliable antibody test insinuates that you’ve tested antibody negative. If so, why persist thinking you had covid? Other illnesses make you ill too.

latticechaos · 01/09/2020 00:58

The description 'anxious' is being used more and more to discredit and dismiss people who consider covid a cause for concern.

I think people who are not doctors should probably not throw round generalisations about other people's health.conditions.

Long covid is real. Many many people are under care of doctors nowe with documented real symptoms confirmed by e.g. lung capacity tests.

HappyTuesdays · 01/09/2020 01:06

I can't see how it would be an issue really in terms of treatment. I know two people with long tail covid and they know they have it because of diagnostic tests for lung function, heart rate, oxygen levels, blood tests re organ function etc. It's not like there's going to be loads of people sent for physical rehab who shouldn't be there - it's only those who are physically affected. 'Feeling a bit tired' won't get you a diagnosis/referral.

HappyTuesdays · 01/09/2020 01:09

And yes I also agree with the bandying around of this word 'anxiety'. An HR professional ensuring the workplace she has responsibility for is covid secure, as per government requirements to carry out risk assessments, is not displaying 'anxiety' FFS, not in terms of common parlance and certainly not in terms of psychiatric diagnostic criteria.

SheepandCow · 01/09/2020 01:17

@HappyTuesdays

I can't see how it would be an issue really in terms of treatment. I know two people with long tail covid and they know they have it because of diagnostic tests for lung function, heart rate, oxygen levels, blood tests re organ function etc. It's not like there's going to be loads of people sent for physical rehab who shouldn't be there - it's only those who are physically affected. 'Feeling a bit tired' won't get you a diagnosis/referral.
Exactly this.
latticechaos · 01/09/2020 01:19

Dismissing everything as 'anxiety' is a major component of covid denialism.

SheepandCow · 01/09/2020 01:24

It's not easy to fake a debilitating illness long-term. No matter what the cause, physical or MH. Either the person will be out and about living life, or they'll be seriously limited in what they can do.

WitchSharkadder · 01/09/2020 01:51

This thread is pretty offensive. I have health anxiety (although I don't not think I've had Covid of any kind, long or otherwise) but I do know how debilitating HA is to live with everyday. FWIW my HA was triggered by a life threatening illness I had 10 years ago, before that I was the type of person that never went to the doctor and dealt with anything and everything by taking a paracetamol. My HA wasn't recognised or diagnosed for years due to doctors suspecting my symptoms were related to aforementioned illness, and when consultants are regularly telling you your ECGs are abnormal and sticking cameras in your heart you tend to think there's something very wrong and worry a lot.

Anyway, physically I'm okay now and after lots of CBT I'm doing much better mentally too, although the whole coronavirus thing has flared up some issues a little admittedly in that I am a little anxious about catching it.

I know there's people out there who think they have every ailment and milk it (my mother for one) but they're generally attention grabbing hypochondriac types. Most actual HA sufferers go to great lengths to hide it, in RL only my husband and sister know about mine as I hate pity, attention and people thinking of me in the way many of you lot have talked about HA sufferers on this thread.

Dismissing genuine HA sufferers in this way will prevent them from seeking help. Dismissing genuine long Covid sufferers as having HA may prevent them from seeking help. Plus, as others have pointed out, it doesn't matter if symptoms are anxiety, long Covid or something else, anyone with genuine health concerns should be assessed and treated accordingly by medical professionals and not be judged.

hettie · 01/09/2020 09:43

Well it might be tricky for random non medics/ psychologists to disentangle but trust me as a psychologist with a DH with the last remnants of long tail who also happens to work in infectious diseases professionals will get it right more often than wrong. If your 'friends' don't want treatment for their difficulties then they won't be getting misdiagnosed will they. So in answer to your question going forward people who seek help will (fairly) reliably be diagnosed with health anxiety or post viral/long tail Covid.....And I am guessing you will continue to be annoyed by your anxious friends...

GabriellaMontez · 01/09/2020 09:59

@latticechaos

Dismissing everything as 'anxiety' is a major component of covid denialism.
Has someone here done this? Not the OP.
anduin · 01/09/2020 10:13

@Holyrivolli

So how do you know *@anduin* that you have long covid if you haven’t tested positive? Your mention of a reliable antibody test insinuates that you’ve tested antibody negative. If so, why persist thinking you had covid? Other illnesses make you ill too.
I haven't had an antibody test, I didn't have a covid test in March (nobody did), but have had two negative tests in July, the doctors told me to get a covid test because they were worried about my cough. Now I've been given an inhaler as I've developed a wheezing and crackling in my lungs.

As to how I know I've been sick, here's my account:
www.technollama.co.uk/diary-of-a-long-covid-patient

latticechaos · 01/09/2020 10:15

@GabriellaMontez

The thread title includes the words 'health anxiety' and the whole premise of the thread is is questioning long Covid e.g. how are we going to sort out who is a genuine case, who is faking it, who is just suffering generalized anxiety about their health and so on

Implication = They're potentially just making it up.

Exactly the same was said about CFS, gluten intolerance, migraines etc. Always has been.

WouldBeGood · 01/09/2020 10:17

Nobody is saying people are “making it up”. And there’s acknowledgement of how horrible HA is too. But it does matter as public health policy seems to be driven by populism at the moment and it’s necessary to try to separate actual ongoing symptoms (which can happen after many viral infections) from those borne of anxiety.

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