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.

Why are you even on this thread with your nasty little mind?

LC affects predominantly women. Thats why builders and joiners are less affected.

Yes I know two people who have ME. Both desperately trying to get help, both now suffering with severe depression, one has an eating disorder. Both have been told that the depression is now their main illness, and by working on that they could recover. They are both under 25 and their lives will blighted by this forever as they've lost out on education and learning how to be social.

I think you have separate the illness ( which sounds genuine) from your frustration with his response to it. I would imagine that it's very easy to become obsessed with it as the sufferer has nothing else to focus on.

Why can’t ALS be treated successfully? Alzheimer’s? Huntingtons? Parkinson’s? MS?

I agree it is a loss and your brother's approach is frustrating.

I've had a concussion and post concussion syndrome which is now being said to be similar to Long Covid. It's horrid and debilitating.

I understand both points of view, and for those who are family, it is very hard to be sympathetic to the ones struggling for a long time.

I think it's something that I'd say is best to be sympathetic to at times, but try to tell him you need to talk about other things too. It's hard having a chronic illness and I also have a medication induced neurological involuntary movement disorder called tardive dyskinesia that was caused by some prescribed off label antipsychotic after my head injury. I know I've been guilty of talking about it too much. But I think it's not until you lose your health that you have a truly total empathetic response.

Some people just love being ill. They create their whole persona around it. I suppose they think it makes them more interesting in some way. I feel for you OP. I think you just have to let your DB get on with it, and definitely, definitely do not ask after every appointment and absolutely don’t feel guilty if you forget to ask. I know that’ll be hard at first and I’m sorry about your parents.

What is a brain in freeze ?

My daughter started experiencing what seemed liked seasonal/exercise- induced asthma after a Covid infection - she would get very wheezy whenever she went out in the winter, particularly when she went for long walks. She used a steroid inhaler for a few months and fortunately that seems to have cleared it up. She stopped using the inhaler and the wheezing hasn’t come back the last couple of winters. But then, she wanted to get better - I’m not convinced that some of the LC types do.

It’s when the brain has gone past fight or flight into freeze. Remeber long covid dysregulates the nervous system.

It shuts down to protect you and keep you safe. It does this by creating horrific symptoms to keep you in bed. These are created by the brain as a neurological response not a psychological response.

Wtf?
MND is neurological too

There's some astonishing ignorance on this thread

On the contrary, often it is driven people who keep pushing their bodies to be better when they really need to rest for longer

Do you say that about people with cancer too?

How do you know his symptoms are real? Have you met him? Spoken his doctor? Having looked at the list of symptoms I could easily declare that I have it because the majority of symptoms cannot be tested for with blood tests or other investigations. It’s based on one’s claim to have all those symptoms. That’s why there’s still massive research taking place.

Cancer is something that can be seen in X-rays, blood tests, scans. It cannot be fabricated. Comparing the 2 conditions is just ridiculous.

I think she’s implying that he’s fabricating his illness. Many people do. it’s a psychiatric disorder, so maybe he’s not ‘malingering’ as you put it, maybe he has a psychiatric illness.

sabberkshirewest.co.uk/wp-content/uploads/2025/03/Fabricated-or-Induced-Illness-in-Adults-Learning-Brief-V.1.0.pdf

There sure is

So it's a trauma response??

Long Covid for most people has physical markers

some people have physical illnesses that drag them down

some have mental ones that drag them down

we can’t say what ops brother has- one or the other

we can say that for many illnesses, how you chose to live your life affects them

yes you can’t cure cancer by how you chose to live , but you do affect your chance of getting it by how you chose to live

how you recover from a broken leg -!how well you do the physio does affect how well you will be able to walk later

how you chose to react to mental health problems also affects your recovery.

we can just say “but they are ill” and excuse anything

or we can say “they are ill but they don’t help themselves and it’s pulling me down so I am going to walk away “

it’s hard sometimes to judge when people can’t help themselves but even then we don’t owe anyone anything just because they are ill

If you don't understand what brain fog is, think yourself lucky.

Your brother is ill, and I think your attitude stinks.

Hmmm a neuro inflammatory response. Doesnt need trauma.

Absolutely this. Brain fog is real - I've had it as a symptom of post concussion syndrome. It felt like my head was full of concrete and pressure. My thinking became very slow as though my thoughts slowed down and it was like there was something physically stopping the thoughts/neurons firing (ie inflammation).

Perhaps people who are so dismissive should try living with these symptoms for a week then they would soon be more understanding.

Yeah it’s that easy. It really is🙄

In short it’s not easy but you can only change yourself and your response - so it is that easy ( can be hard if you love someone )

You can’t. Because you don’t always know how to. I was bedbound for 2 years. NHS useless. I didn’t know how to change my response.

It took 2 years to find something.

But you said it was part of fight flight or freeze which are trauma responses.

Or are inflammatory markers found when tested for if it is a neuroinflammatory rewsponse? I'm not understanding this very well