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Covid

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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:
anduin · 01/09/2020 10:20

By the way, I am baffled by the tone from some people in this thread. I was sick enough that they took me to hospital because my ECG was all over the place, they were seeing lots of heart problems related to covid. In fact heart problems are one of the most common symptoms for long haulers.

I've been referred to have a full Pulmonary function test next week, there's something wrong with my lungs, I'm not just imaging it. I am wheezing often, and I have a crackling/bubbling sound in my lungs. My GP said that I sounded asthmatic (I've never had asthma).

I'm not imagining this, I'm not imagining the hair loss, the tachycardia, the bone-crunching fatigue, the dizziness and my eyesight.

I guess it's convenient to think that we're all just anxious, but there are horror stories out there from people who have always been healthy and do not want to be in this situation. I would love to be out there doing what I love, instead of guessing if I will have a good or a bad day today.

latticechaos · 01/09/2020 10:21

@WouldBeGood

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.
Nobody is saying people are “making it up”

The op said And then after a while I get a bit cynical about people who always have something wrong with them

And how are we going to sort out who is a genuine case, who is faking it, who is just suffering generalized anxiety

The op believes some people are making it up.

WouldBeGood · 01/09/2020 10:46

Ok! Just to be clear, I’m not suggesting anyone is faking it. I’ve suffered from HA myself. It’s horrible.

GabriellaMontez · 01/09/2020 12:11

@latticechaos

Health anxiety is real. Its symptoms are debilitating.

Long covid is real.

There are fakers too but I suspect they're in the minority.

I think the OP was quite clear.

user1477391263 · 01/09/2020 14:06

I guess it's convenient to think that we're all just anxious
Literally not one single person here has said this. Do you lack reading comprehension skills?

ApplesinmyPocket · 01/09/2020 14:14

I guess it's convenient to think that we're all just anxious

It's not about saying anyone is "just anxious". Anxiety, the medical definition, is not just 'being a bit anxious about something", it's not belittling of someone's very real physical symptoms to say they have "anxiety" - it's just that anxiety causes physical symptoms, which can easily be mistaken for physical illness.

Our whole language reflects this!

his heart lurched
he felt sick to his stomach
he went hot and cold all over
his heart missed a beat
his throat closed up
he felt dizzy with fear
he had a lump in his throat

etc.

WitchSharkadder · 01/09/2020 14:35

The problem is that the term 'faking it' has been used several times on this thread, which insinuates people are lying about their symptoms. Whether due to anxiety or long Covid, the symptoms are very real, scary and worrisome for the sufferer and people saying they're faking it is just insulting.

latticechaos · 01/09/2020 14:43

[quote GabriellaMontez]@latticechaos

Health anxiety is real. Its symptoms are debilitating.

Long covid is real.

There are fakers too but I suspect they're in the minority.

I think the OP was quite clear.[/quote]
Yes, the op was clear:

how are we going to sort out who is a genuine case, who is faking it, who is just suffering generalized anxiety

The op literally said 'who is faking it'.

Shockingstocking · 01/09/2020 15:04

How are we going to do it?

Well, I would start by suggesting that you don't, as you're clearly not a medic.

And may you be spared fibromyalgia etc (which I think you'd find a humbling experience).

LastTrainEast · 01/09/2020 15:14

Because of course if it is anxiety then humouring people and encouraging the formation of groups to affirm each others 'condition' is better than them getting the help they need for what they really have. Even if such groups might suck in other anxiety sufferers.

And it's not anyone's concern what happens to such people unless they are paid to be concerned.

Got it.

Pixel7777 · 01/09/2020 15:18

If you look at stories such as this it seems to be both physical and psychological- it is all linked, not one or the other.

www.bbc.co.uk/news/stories-53948028

birdy124 · 01/09/2020 15:42

I think this is a very very small worry, of course there will be a few people who are not sick who will convince themselves, but majority of ppl who have long covid are absolutely having some sort of post viral issues. They have been found inflammation of the heart in asymptomatic ppl, and it's not known if this will all resolve itself or cause long term damage. We've basically never studied asymptomatic flu carriers, so we do not really know what kinda of immune response is even happening in asymptomatic ppl.

I think its sad we already see such skepticism. We absolutely have NO idea what long term damage will be, there simply hasn't been enough time. In March, all doctors said this was a respiratory disease, now they see incredible amounts of blood clotting occurring, they see that the heart is seriously impacted.

In the past ppl with POTS have been told they're making it all up, but now with covid hopefully post viral issues will be more urgently studied and therapies will be developed.

time4anothername · 01/09/2020 20:11

are you a physical or mental health professional OP? Why otherwise are you saying that "we" have to understand this?

Summerflowers79 · 01/09/2020 20:26

I probably am one of those people you would always consider something wrong with them, suffering for a decade with all sorts of things like persistent stomach cramps, a weird feeling that came and went when swallowing and joint pain. I finally got diagnosed with Crohn’s Disease on the operating table (after countless GP trips). Now it all makes sense! I’ve also since been diagnosed with coeliacs disease after testing positive and am now gluten-free. Still I’m widely considered as one of those people

Kitcat122 · 01/09/2020 21:25

I was someone who never went to the doctors. I was an exercise freak. Very healthy got Covid and have had terrible chest pain and shortness of breath for 5 months. My doctor (who I have actually never met because I don't go) has only given me phone appointments. First I was told 8 weeks for a respiratory virus. Then at 12 weeks I got "Aaww we are seeing lots of people with on going problems". Finally in July I got further tests. I am most definitely not anxious I am bloody frustrated!!! A fit, healthy person with no previous health issues and I have been like an invalid with No medical help for months. Will I get better?? I Hope so but no one medical has actually, really given a shit yet. Rant over.

latticechaos · 01/09/2020 21:31

@Kitcat122

Flowers that's awful. I feel the country is in denial about long covid!

Really hope you recover eventually.

HappyTuesdays · 01/09/2020 21:40

I dunno, I guess the op feels like any diagnosis they personally do not understand impacts on them in some way. Even though it doesn't. Maybe he or she is suffering from anxiety?

amicissimma · 01/09/2020 21:41

As I have a couple of friends who have remained quite unwell since having 'just flu' in 2017, I am hoping that the spotlight being shone on long Covid will prompt more research into all sorts of post viral illness.

There well may be an anxiety component to post viral illness; I would think that not being able to shake off the effects of an infection years later would be very likely to induce anxiety, which probably wouldn't aid recovery. Body and mind are linked and both need attention.

HappyTuesdays · 01/09/2020 21:49

@amicissimma it could be a good opportunity as there is a fair degree of focus on it at the moment. At least that's one possible positive outcome.

I myself remember having flu years and years ago, not feeling right for ages after and then suddenly coming down with bloody pneumonia months later in the middle of summer. Never really thought about it at the time other than "bloody hell, that's weird" but I do wonder, looking back, and ofc if drs can start thinking about how to prevent similar happening to other people it would be a good thing.

time4anothername · 02/09/2020 23:07

another example of a young woman who had to battle long and hard for diagnosis and avoid the gaslighting that she was just anxious
www.kentonline.co.uk/malling/news/fitness-fanatic-one-day-disabled-the-next-233054/

CFSKate · 03/09/2020 09:59

The ME/CFS community are watching with interest. If long covid does turn out to be a long term illness, will patients be discredited in the same way as ME patients?

GabriellaMontez · 03/09/2020 09:59

just anxious

What?

Health anxiety is real. Its symptoms are real.

What this article shows is how hard it is to distinguish. Even for our esteemed medical professionals.

GrapefruitsAreNotTheOnlyFruit · 03/09/2020 10:30

After my mysterious viral illness in March I have chest tightness and some odd breathing patterns. I spoke to a respiratory consultant who said the description of my the initial and ongoing symptoms are indicative of covid.

It's not the end of the world. I am not anxious. It seems to have improved (I had a cough for several months) but is still there. I think most people don't want to know about it because it's scary to think youngish, healthy people could have long lasting symptoms.

Personally I would say if some one has no history of health anxiety the overwhelming likelihood is that their symptoms are physical. Just believe them and be sympathetic.

Ormally · 03/09/2020 13:34

As a PP has said, health anxiety often comes about after a serious illness - the fear that it could very well return, for example. And/or it can run alongside repeating actual bodily symptoms that don't have an explanation resulting from the tests that have been tried, but still don't just go away with mindfulness or medication that works for mental conditions because the source of the symptom most probably does have a basis that really isn't 'all in the mind'.

Very few people would choose not to feel well. Most would probably like not to have to change what they had previously had no problem doing. It's pretty difficult to live normally and be fine with that if you can't rely on being able to. Some will be affected with what they can eat, how they can work, sleep, move, digest, menstruate. All mostly non-negotiable. Sometimes you do have to find out what makes things a bit better, or not, like avoiding certain foods.

If you are lucky enough not to be hindered by conditions that are nibbling away at the edges of what you'd consider normal, please don't take it for granted, but don't assume that's everyone's experience and find them a bit tiresome if they try to adapt so as to feel better.

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