The long covid sink hole

[Cortrach]

My brother has long covid. He tells me about it repeatedly, in great detail. About consultant appointments he has arranged for himself up and down the country, about how he is getting "support" from the "long covid community" which is as far as I can tell not a community at all but rather a collection of disparate individuals staring at the internet. He has been having long covid investigations for close to six years now. In all that time, no one has found any physical cause for his many varied symptoms as identified by him. Previous to him developing long covid he had atypical asthma for several years. Atypical asthma seems to me to be similar to long covid in that having it entailed him visiting lots of specialists who couldn't find anything wrong with him other than breathing in an anxious way.

I feel like I've lost him, and actually I need him because our parents are (genuinely) unwell with age related problems. He won't talk to me on the phone about it because he says it's too tiring for his long covid. I can't question the long covid because apparently he is surrounded by people who don't believe him and they are toxic.

I guess I just write him off, but I feel sad. He's my brother. And he's only 50! It's a waste of a life.

Thank you. Absolutely, this.

@Cortrach until you shift your attitude, you have lost your brother.

I have ME. I think a lot of LC is in fact MEcfs too.

This illness has no test for diagnosis. It's not even easy to get a diagnosis. All we have are online communities (some are built around organisations such as the ME association led by doctors and advocates who know a huge amount).

I can tell you that anyone in my life who doesn't understand or WANT to try to understand my chronic illness can't have a relationship with me. That's not because I'm brainwashed or being cruel cutting them out, it's because this has completely changed my life. Everything I do is influenced by my ME. I have a similar issue with my sibling. I think they think I can get better if I want to. I can't effectively discuss anything with them because of this.

It is a real physical illness. It's not a mental illness. People may feel anxious with it but it takes a long time to understand and even then doing anything (e.g. having a day out) is like waiting for the shoe to drop to see if you crash afterwards.

If I was in your position, I would be trying to understand and reading up on LC.

Your frequent use of quotation marks and your comparison with what you describe as your parents (genuine) ill health conveys loud and clear that you don’t believe your DB is actually unwell. He will be picking up on this.

his community protects him from this. That’s why he seeks their support and understanding when it’s unavailable from family and friends.

try to imagine it from his side. How would you feel if you had a chronic disease and your sister did t believe you and was annoyed at you.

you are letting him down and you will lose him.

How kind.

And some of us have been too ill to do anything at all. And get worse if we try.

Why would anyone choose to be severely unwell?

Long covid is real. ME or other chronic fatigue conditions are real. They do completely shoot your energy mental and physical. If your brother has one, it is very likely that he would genuinely not have enough capacity to cope with his own normal day to day activities, let alone any spare energy to think about your parents' needs.

Obviously there are people who fabricate symptoms of illness, or highly exaggerate them. I cannot tell you if your brother is one of these people, but if he does genuinely have long covid or another post viral chronic fatigue condition, his inability to support you with your parents is likely very real.

A little unrelated to the topic, but I have asthma and have found salt therapy helpful - https://littlehimalaya.co.uk.

Ive wondered whether it would’ve useful for long Covid sufferers. Might be a good suggestIon for your brother to try?

I would add, you don't mention what friends or other family your brother has, but of course he is going to be seeking support from other people if his parents are not well enough to support him and his sister doesn't believe him. Of course, he could be using the community to feed or create an illusion or massive exaggeration, but you can't use him seeking support from outside his unsupportive family as a clear indication that he is involved in a cult helping him to fabricate it.

I was/am short of breath, get brain fog as well as other symptoms. For a long time Drs told me I was just anxious. It was incredibly frustrating because I knew it wasn't anxiety even though I presented with symptoms of anxiety. Finally a new Dr at the surgery acyually listened to me and referred me to cardiology and I was diagnosed with postural orthostatic tachycardia syndrome.

I was really paranoid that people thought I was making it up, was just revelling in being ill, that it was all in my head etc. I hated it, hated feeling like I was never 100% well, hated that Drs just brushed me off like I was a lunatic. I didn't want being ill to be part of my identity, I just wanted to feel better.

Anyway my cardiologist started me on meds that help, I still have flare ups, still get brain fog and get short of breath doing things like very basic chores sometimes but I also run 50-60kms a week most weeks, I run a business, I no longer always feel sub par. I just needed a Dr to actually listen to what I was saying to them.

I think he’s probably very very unwell. No one believes you. Everyone thinks you make it up.

Your best bet is to support him. The reason came off the communities was because l found them very depressing and made me worse. But they are helpful when you need them. So l don’t want you to think my coming off them is validating your beliefs.

l came off them as part of a recovery programme. If l hadn’t improved l would still be on them. They were supportive but detrimental to mental health at the same time.

I’m sure you don’t. Neither do I. I would never assume someone else claiming a condition is mistaken or exaggerating or even simply faking. There’s the odd person I know very well, where I feel justified in wondering if they find it easier to be ill than to be well. DM for example was always suffering from one thing or another, and DF ran round after her meeting her every need. She was unpleasant to him when his terminal illness meant he was less capable of facilitating her life. Since his death she’s discovered previously in explored skills such as ‘doing her washing’ and ‘making herself a drink’. She misses being looked after very much.

Just because many people have genuine and serious chronic illnesses, doesn’t mean that all people who say they have, do.

he is getting "support" from the "long covid community" which is as far as I can tell not a community at all but rather a collection of disparate individuals staring at the internet

Why so disparaging about an online community? Isn’t that exactly what Mumsnet is?

Imagine having an illness with very real symptoms which your doctor doesn’t understand and your family dismisses. Wouldn’t you go online to look for support and ideas of how to manage it? Yes, some of the ideas will be crackers but there’s always the hope that something will work.

Good luck OP. The Long-COVID community is like a cult, and if you show any hint of a doubt in a fraction of its validity you'll be cut off as an "oppressive person" a la Scientology. You have only got to look at the comments on here. A self diagnosed "sufferer" who has been told numerous time there is nothing physically wrong, is to be believed without question, and presumably housed, fed and clothed by the taxpayer forever and ever.

All you can do is resolve to be there for him when he needs you.

A self diagnosed "sufferer" who has been told numerous time there is nothing physically wrong, is to be believed without question, and presumably housed, fed and clothed by the taxpayer forever and ever

Its actually a neuro immune disease. And as yet there is not test for it. And some of us who have it severely have paid in for years and years. And aren’t funded by the taxpayer. I am however on full Pip. But not UC. I really hope that pisses you off after that comment.

What a disgusting comment.

What pisses me off is my alarm clock going off at 6am so I can pay 45% tax for people to live off my graft for their imagined conditions.

Yeah we’ve all had to graft and pay tax. You’re not special. I never thought about it.

But you carry on in your selfish little nasty way.

Yeah. I work and pay tax and live with my 'imagined condition '. You know the fun thing about disability....? It can happen to anyone. Even sanctimonious, nasty people.

Yep.

’Imagined condition’

Its not imagined. Even if it were it would atill be a severe mental health issue. But it’s not.

So crawl backinto your mean nasty hole.

I spent 20 years dealing with sneers from friends, family and some employers before finally getting a diagnosis and treatment.
I haven't forgotten those people and how they treated me

Just because you dont understand the physical issue, it doesn't mean it isn't real

And yes, I take huge comfort from an online community because I am stuck in bed a lot.

He hasn't been diagnosed with anything, and won't accept tests that may actually diagnose the issue.

What does this tell you?

What is this apparent test which would have nailed his diagnosis which you say he refused? My mum has long covid, it's an awful condition, and very much real. It sounds like you have decided your brother's illness isn't real because it is inconvenient for you.

Good God - I came across people with this type of ignorant views back in the 1980s when I had ME - I thought the world had moved on in the last 40 years 🙄🙄🙄. All the time I was trying to live with ME for ten years in my 20s and 30s I was still managing to drag myself out of bed at 6 am to work in a high pressured job and I didn’t get a penny in support from the NHS at that time. I got into significant debt to pay for private treatment. I’m now 68, still working half time, and have paid my NI contributions and tax since I was 16, and I find it deeply offensive for you to suggest that you are supporting my ‘imagined’ long covid, which has been diagnosed by one of the country’s leading teaching hospitals. Perhaps if you are ever unfortunate enough to develop a condition like this, you might learn to have some empathy and understanding for people who are really ill and struggling with their symptoms.

I worked and always have worked as a higher rate tax payer with my "imagined condition"

I just have very little quality of life outside that

I think LC is a real thing.

I also think it is a malingerer’s charter.

Both of those things can be true.

It is OK to look after yourself you know.

You can't/don't have to be everyone's support system.

That sounds awful for you - however OP's DB does not have reduced lung function. He's been investigated, due to breathlessness, and no physiological cause found.
I'm not dismissing Long Covid, or other post viral symptoms.