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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:
Tangledyarn · 31/08/2020 08:14

I agree to a degree, theres a lot of anxiety and excessive focus in on symptoms with some people which whilst understandable obviously isnt helpful and it's often v hard to discriminate between anxiety and physical symptoms. But also it's very likely that there will not be v little treatment for long covid in the same way there is no treatment for cfs/me so theres not a huge amount to be gained from focusing in on it. I've got some ongoing symptoms from March, but to be honest just think it's the nature of how viruses work to some degree rather than calling it long covid (I've been left with worse asthma, chest pain, breathlessness and keep losing my voice) so have just kind of accepted that's how it is right now and am not worried about it.

Wholeholes · 31/08/2020 08:22

I agree with you but this won’t go well!

I think there’s definitely a middle ground.

My dd had flu last year and the after effects lingered for a long time-she still doesn’t have the same appetite for example.

I also have a friend who is the least health anxiety person ever and she is mightily pissed off that she’s still having chest and muscle pains months after having Covid.

KetoPenguin · 31/08/2020 08:26

Health issues are so often dismissed and minimised, I think that's the greater danger.

TW2013 · 31/08/2020 08:32

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.

It is possible to have a gluten sensitivity without testing positive for coeliac on a blood test. I have unknowingly eaten gluten and become very unwell very quickly. Although the dr did offer to retest for different antibodies she said that as I would have to eat gluten again and it probably wouldn't change my diet because I am very careful there probably wasn't much point. I am now much more careful than I was before about checking labels and it just fits into my life. I would not go moaning about my symptoms on Facebook though, I just deal with it as part of life.

SomewhereEast · 31/08/2020 08:36

Controversial but....you're almost certainly right in some cases. Some people will bring existing (diagnosed / undiagnosed) mental health issues to this, some people like to the insert themselves into any big event (the amazing number of people who 'almost' caught that particular Tube or bus in the London bombings etc), some people always tend to exaggerate. Of course some people will very definitely struggle with the aftermath of Covid longterm, although there's a question mark over whether Covid is any worse than flu in that regard. But it does frustrate me how Long Covid is the in thing at the moment, when people like me who have struggled with CFS for years largely go unnoticed & struggle to get a diagnosis or referrals. I know that sounds harsh - its just the wider problem of people tending to talk as if everything Covid-related is "unprecedented" when it actually isn't. So I must admit I take people I don't know posting on social media about Covid symptoms / Long Covid with a little pinch of salt, especially as there's an inevitable bias in that people who were totally asymptomic or had very manageable symptoms won't post or tweet about it much or at all.

MaxNormal · 31/08/2020 08:46

Yes I think this is a distinct possibility. It'll be like Lyme vs "chronic Lyme".

lljkk · 31/08/2020 08:47

There's a lot of HA on MN. Isn't the nature of HA that most who have it can't recognise they have it?

TheKeatingFive · 31/08/2020 08:49

I agree with you, it will be very complicated. I don’t suppose there’ll be much headspace/resource to figure it out anytime soon either.

Refractory · 31/08/2020 08:54

I agree 100%.

WouldBeGood · 31/08/2020 08:56

I too agree with you.

Frazzled13 · 31/08/2020 09:01

I agree, but for some of the symptoms, does it matter?
You've mentioned anxiety as a long term covid symptom, someone with anxiety (whether from covid or not) still needs treating and I imagine the treatment might be the same regardless.

TheSultanofPingu · 31/08/2020 09:04

I agree. Health anxiety seems to be very common nowadays.

MRex · 31/08/2020 09:04

It might be easier if you just get different friends who don't irritate you.

sirfredfredgeorge · 31/08/2020 09:11

There is also the impact of lack of exercise, so many people have lost all their normal activity levels and maybe "go for walk for an hour", which is only a exercise if you're unfit, walking up a mountain or speed walking. Previously fit people who lose fitness get lots of the symptoms too.

And why it matters to know what's causing the symptoms, is because treatment is different depending on the cause. We don't just alleviate symptoms, we try to cure people.

Barbie222 · 31/08/2020 09:13

Health anxiety so often sits alongside other personality traits that I find wearing. Without wanting to be mean, it's possible to move away from these people and surround yourself with more positive types.

Abraid2 · 31/08/2020 09:21

I have two friends with health anxiety and it is very difficult. The problem is that they see their world view as the rational and reasonable one and everyone else as being reckless.

Velvian · 31/08/2020 09:24

An antibody test??

Abraid2 · 31/08/2020 09:39

The AB tests don't seem to work brilliantly. My daughter is a medical student and she and since late spring she and her friends, some of them now qualified doctors, have been working on wards in a large W Midlands city and in London where they have definitely been exposed to covid without full PPE.

Not a single one of her circle of about ten has had a positive Covid or AB test.

Lougle · 31/08/2020 09:43

Does it matter, though, really? If they are experiencing difficulties, it doesn't actually matter what the cause is, initially, because actually, the treatments will be the same. Pacing, possibly low dose antidepressants, etc. People with health anxiety still feel the distress that their symptoms cause and they still need 'treatment'. Much of that treatment will be reassurance and self-care guidance anyway.

Abraid2 · 31/08/2020 09:44

I think the problem is that they make their personal health anxiety into an issue that everyone else is responsible for. They are 'right' to be anxious because the government, etc, are telling them that everyone is at risk.

WouldBeGood · 31/08/2020 09:45

@Lougle I agree that HA is horrible. I’ve suffered myself before. But I think it matters in this case as it makes people very vocal and risk averse which then appears to drive policy.

SoManyActivities · 31/08/2020 09:46

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 · 31/08/2020 09:48

Health anxiety that should say.

AntiHop · 31/08/2020 09:50

Well unless you've missed the crucial information that you're a doctor, it's not your problem is it.

And before you assume I'm one of those people you sneeringly write about above, I'm not. I just have enough empathy to understand that having health anxiety, or having undiagnosed conditions that affect your life, is no fun.

CrunchyCarrot · 31/08/2020 09:58

Re Coeliac disease - if a person has already excluded gluten from their diet then it needs to be re-introduced for 6 weeks before doing a test for it - which is a biopsy in the intestine, something I can understand some would be nervous about having. The test isn't 100% accurate, so you could end up with a false negative after all those weeks, probably feeling awful on gluten. So I do get that.

I've histamine intolerance and you basically can't diagnose it with a simple test. It relies on keeping a food diary and noting symptoms, then doing an elimination diet. I also have Hashimoto's hypothyroidism which is poorly understood and treated by doctors, so I fully understand the comment that 'doctors don't take it seriously'. I've had precious little help from the medical profession, and have had to do my own research and figure out my own path.

Having said that, it's not easy to spot the fakers from the real long-Covid sufferers, at least, not in the online environment. I suspect it would be easier face to face. There will always be hypochondriacs!