Long Covid Obsession

[ToTheFinlandStation]

A family member has convinced herself she has long covid. The tests she's had indicate nothing wrong. She says this is because it's long covid and no one understands. She has refused other tests. She says she has refused them because there's no point as they're very stressful and she knows she has long covid anyway.

She constantly talks about long covid, about what people in the online long covid support groups say, about possible treatments for it. She posts long covid memes on social media and updates her social media status with in depth reports about her long covid symptoms, about drugs and studies, very detailed, technical medical papers.

I feel like I have lost her. I also think there is something cultish about these long covid groups she is part of, like they're all feeding off each other. It puts me in mind of other people I know who disappeared down conspiracy theory rabbit holes during covid.

Has anyone experienced anything similar? And if you have, did you get the person back? If you did, how?

No experience or advice.
This was mentioned on a podcast I listened to.
Long covid is the wrong terminology.
She had covid and now she, possibly, has other complications which may be completely unrelated to having had covid. If you suffered from pneumonia, you might end up with damage to the lungs, you wouldn't suffer with long pneumonia.
Throw this out there, it might change her way of looking at the situation and reduce the ongoing obsession.
Of course it is very possible she has serious health issues which came to be after covid, because of covid or coincidence in timing.
Not a lot you can do to help or reassure I don't think.

I've had CFS 2003- 2017.
Covid in 2020 re triggered it, I call it long covid purely because it's easier and other people understand.

Posted too soon, it sounds like she needs your support and understanding whatever's going on for her.

Why do you think she's wrong?

There isn't a test for Long Covid so she can't have a test for that.

I think people go one of two ways with difficult chronic conditions, some seek out others in a similar situation and others don't want to do that or spend their whole time talking about it.

She must feel very isolated now, if she's not able to socialise, and so this new group has become her world because she's not able to do much else.

It wouldn't be my way of dealing with it but I think you have to accept this has upended her world.

Can you dodge her social media posts for now? Depending on the platform, you can usually pause or block them for a while. I would do this as it can give you a very odd view of the person, making them seem more obsessed than they are. I had a friend who lost their mind a bit during Covid with conspiracies, but once she came off social media, it was better and I found talking to her in person was not so bad and she wasn't nearly so obsessive. It also passed, but after a couple of years.

Thanks @stayathomegardener I am being supportive but I'll be honest it's wearying and I don't know that it's helping her. She talks at me about it, at some length, she gets annoyed if she perceives I'm not attuned to her eg if I forget to ask her about how a medical appointment went. She only talks about other things briefly and it always comes back to long covid, eg I say have you seen this programme on TV, she'll say yes, but that she couldn't follow it because of her brain fog. She then talks about her brain fog at length.

I do listen and express sympathy but if anything over the past couple of years her scope of interest just gets more and more narrow, it's like she exists in a different world from everyone else. It's not just a chronic illness thing, I have other friends and family members who have chronic illnesses but they don't have this same obsessive focus. It has become her identity.

Maybe do some in depth research on her behalf instead of being judgemental. Your post sounds almost like you don’t believe it’s a real illness. Believe me if it happened to you, you wouldn’t think that way. You’d also understand that it is all consuming because it affects every bodily system and there is little/no escape. The early days can be absolutely horrific and as a previous poster mentioned can totally upend your entire life. There are no tests for long covid, it doesn’t mean it’s not real. The sharing of posts on SM are probably a cry for help and support from those around her who are questioning the validity of the illness. Regardless of your personal views perhaps you should just focus on being a support to her right now. Ask her what she needs. From experience someone to listen, some homemade healthy food and some company would be a good start.

@ToTheFinlandStation I think you are caught in a loop, though, she thinks you are doubting her illness, which you are in your first sentence, so she tries harder to prove it to you.

One tactic is to acknowledge what she just said in a non-dramatic way, instead of resisting it immediately or changing the subject. If she says 'I can't follow the TV programme because of my brain fog' just say 'yes, your brain fog' or 'hmmm' without a follow up comment.

Sometimes people just want to be heard.

I used this technique with one of my children who was constantly whingeing about feeling ill or tired, I found instead of trying to tell them they weren't or encourage them or change the subject, showing I'd heard what they were telling me solved it much quicker.

I got this from the 'How to talk so kids will listen and listen so kids will talk' book but it works on adults too!

@PrettyPines I don't know that she's wrong, but previously she considered herself to have a different (also chronic) illness, became very frustrated when tests showed she did not, diagnosed herself based on symptoms she perceived, visited various consultants etc , again it was an extended affair over several years.

With this, it is different in that she did have covid, and was unwell with it, and should have received medical care. It was during that time when the NHS had raised the threshold where they would help, in order to avoid being overwhelmed, and I do think that her case was one of the many examples of poor care and lack of treatment. I also appreciate that it was extremely frightening for her to realise that she was unwell and that the health system wouldn't help her.

But I am not convinced that she has a lasting chronic illness as a result. She's had tests on her heart, lungs and so on, all normal. Other tests she refuses. I think she may have some kind of lasting psychological trauma from the time she was physically unwell and alone but I don't think she has long covid, I'll be honest. However I could never ever say that to her.

When your whole health has been taken away from you and you feel totally lost in a body you don't understand it's hard not to obsessed about it.

If someone had cancer we would understand them seeking the support of others with the condition, we would ask them about their appointments and we would expect them to suffer a kind of grief.

I know someone who blogs daily about her cancer, often crying about the fatigue or the sickness or the changes to her body. And she gets heaps of support- both on her posts and from places like a Maggies centre. I don't begrudge her any of this but why is it any different for other conditions? There is just as much loss, they are just as deserving of compassion

Long covid has taken everything from so many people. They are often very isolated and without any of the kinds of support you might get. They often struggle to get benefits or understanding from employers. It's devastating and awful and seeking support from others with the condition or following developments in research doesn't strike me as remotely cult like. She sounds like a "brave fighter".

Maybe she does have it, I know what you mean about fb groups though. I joined some for another condition I have, to try and get some more info and there seems to be an awful lot of people almost revelling in the condition and a lot of what seems health anxiety

I mean I went 20 plus years without diagnosis. I am sure a lot of people got bored of my battles or thought it was psychological. In fact I gave up at one point, despondent at all the tests coming back "normal". But it wasn't , I was eventually diagnosed with a very real and quite dangerous condition.

@CassandraWebb I'm really sorry to hear about your diagnosis. My family member never got diagnosed with a physical illness previously. She was told it was anxiety, which she was furious about, but eventually down the line she had no symptoms and no longer pursued any other diagnosis. Then a couple of years later she caught covid, and then the whole cycle started again - lots of talking about symptoms, tests not showing anything, obsessive reading of complex medical papers and relating sentences in them to how she is feeling.

@ThatsNotMyTeen that's exactly the impression I get from all the stuff she shares about and from these groups. They are all constantly scouring the internet for anything related to all of the diffuse symptoms they have, sharing detailed information about how they feel throughout each day, and everything they talk about loops back to long covid, and nobody else understands anything about it all apart from them.

That could be my story too. Told it was anxiety/stress over and over for twenty years. It wasn't. And yes sometimes I wouldn't talk about my struggles or would just fight against them because all the failure to diagnose meant that even I thought it was in my head and felt ashamed so would just power through and seem fine when I wasn't . Just because you can't see something it doesn't mean it isn't real. Just because she's never tested positive for anything doesn't mean her symptoms aren't real

Try a day in their shoes and you might have a very different viewpoint

It's devastating to lose your health and not have any answers how to get it back. It's even more devastating when even your own family don't believe you.

I have had several family members ring me and apologise profusely since I was finally diagnosed. But I will never forget how they treated me before diagnosis. I was just as ill then. I never wanted to be ill.

Again, I'm sorry for your diagnosis.

However, with my family member, it really does seem that previously it was anxiety. She was apparently very ill, no diagnosis, but then got better all by herself. This previous illness, which was also all consuming and reported at length to me and others at the time, is now never mentioned. It just ... went. And now it's all the long covid.

There may be a connection between the two. Based on my own experience which I am too tired to share in detail right now. But some underlying conditions can go undiagnosed a long time. I honestly now know who the decent people are based on how they treated me before diagnosis

Anyway, you've obviously made your mind.

CFS post viral infection, is a known issue, which seems to be very similar ti the issues reported with 'long Covid' having post viral fatigue is already not understood, and I'm not sure why it's being linked purely to Covid as the symptoms seem similar. I also think if it came under the post viral fatigue heading, it may be something that was better accepted, although CFS isn't particularly regarded by many people either

Agreed.

And there are also conditions like mine that can flare up for several years following a viral infection before dropping back to "background noise" levels. But to the uneducated I guess it would be easy to assume that meant it was fake

This.

It's hard enough being chronically ill with something that doesn't have a diagnosis and a known cure without people questioning the validity of their experience. I would imagine it feels like her experiences are being minimised hence the annoyance. When you have an easily diagnosable chronic condition there is plenty of sympathy and support available. Can you imagine feeling so ill and having people minimise and dismiss what you are going through? It's not surprising she is looking to support groups to talk about it with other people who understand and seeks out information.

Just because you haven't had a positive test for a condition doesn't mean the symptoms aren't real, and it doesn't mean it's anxiety. How many women have been told their symptoms are anxiety or the menopause only to find out they have cancer years later? Sometimes symptoms show up five years before you get any kind of positive blood test.

I think the more people try to dismiss or question someone's symptoms the more they will seek support elsewhere. I understand it may be difficult to listen to -but the more people listen to and actually hear her, and acknowledge what she is going through, the less she will feel compelled to seek support elsewhere. I know it must be hard, but she's the one going through the experience. Can you imagine if it was you? I would find the identity comment really offensive and dismissive. You think it's anxiety, but it's just your opinion. It doesn't mean it really is ...

I understand it's hard for you and that you feel have lost her, but that's what long covid and similar do to you ... She may feel she has lost herself ...

Sorry, I meant to quote @CassandraWebb . I tried to edit but couldn't remove the quote ...

Sorry this was the post I meant to quote.

All of this sounds completely consistent with what someone with a chronic and life limiting illness, particularly one for which there doesn't seem to be much help or treatment, would do (and it also seems completely believable that someone could have had previously undiagnosed illness, which may even be what left them more susceptible to long covid in the first place). When you're unable to do very much due to exhaustion of course you'll spend a lot of time stuck in your own head trying to make sense of what's happened to you, and to connect with those who might understand. I feel really sorry for her tbh. Perhaps you could limit the time you spend engaging with her, so that you can be really present and attentive while you do and give her space to grieve what she's lost.
I was super lucky to get LC at the time that the NHS cared about it (LC clinics etc) and to have made a 90% recovery within the first year. An acquaintance (similar age, early forties and primary aged kids) has not left the upstairs of her house nearly two years on from hers. In that sort of situation any amount of obsession would make sense to me, really.