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.

l have LC. It’s exhausting. I couldn’t speak to anyone for a year.

I found relief through brain retraining. Once you understand limiters and how to calm your nervous system it really works. Once you look at the poly vagal theory it all comes together.

Do you participate in long covid on the internet.

You sound like you think your brother is imagining he is ill or willingly adopting the sick role to abdicate his responsibility? Unfortunately that's very difficult to know for sure, and you already know that when people have doubted him they've been given short shrift. Regardless, it makes no difference to the situation as whether its an illness of the body or the mind, he is not going to be stepping up any time soon, so to save your own frustration I think you need to accept he's a write off for help with your parents.

I used to. But the first rule of getting better was to get off that crap. It’s just full of doom and gloom.

His brain is in a protective mode. Reading that shit just scares it more and makes it worse. Now l avoid at all costs.

He had to let go of the fear and being scared about symptoms. The communities just fuel it.

My sympathies are with your brother. He’s unwell. His symptoms are real ( yes not imagined) and it’s fucking awful,

My brother stopped contacting me when l was really ill for unknown reasons. I haven’t contacted him. I think he thought l was making it up.

The communities just fuel it.

Omg thank you for saying that. This is what I'm feeling. The way he talks about it, it's like a cult. I find myself policing my language, but inevitably I get it wrong, because I'm not privy to what's acceptable to say this week, or this day, or whatever.

He was offered a test that would apparently have nailed his diagnosis, but he refused it because according to him he already knew the answer.

He's gone down several weird political rabbit holes as well - he was previously I would say conservative with a small c social policy wise (unlike me - dyed in the wool Trot) but now he's on a left wing purity spiral - he watches GB News in order to report on how right wing they are and gets wound up because they're right wing .

I’m not sure what politics has to do with it.

The asthma is created by his brain. It’s not pyschological. It is an actual symptom. But the tests reveal nothing because his brain mimicking it to protect him.

He can spend a fortune or read a poly vagal theory book.

His brain neurology has changed to protect him. It can be unchanged, but it’s hard. The best thing to do would be to ignore any mild symptoms. And do stuff until any symptoms become too loud. That’s when he should rest. Straight away.

Ita genuine. He won’t be able to help with your parents. I couldn’t read or think at my worst. You need to help him. The weird political thing could be part of the brain changes.

Wow. Now Google what the ME and Fibromyalgia community has had to put up with and re read your post.
Fatigue is life wrecking. Get over yourself

These might help.

https://cfsrecovery.com/

And this was mindblowing.

https://www.coffi-collaborative.com/post/coffi-consumer-researcher-online-seminar-iv-where-lived-experience-and-science-meet

You need to be nicer to him. The fatigue is unreal.

The asthma is created by his brain. It’s not pyschological. It is an actual symptom. But the tests reveal nothing because his brain mimicking it to protect him.

I'm sorry but I don't understand what this means.

He diagnosed himself with atypical asthma. He did that after he repeatedly got short of breath and had loads of consultant appointments due to being short of breath. The last appointment he had at that time, the consultant told him he was short of breath because he was anxious and breathing shallow. So for him, that was atypical asthma.

Now he's short of breath again and again repeated consultant appointments and tests are showing nothing is wrong and the difference between now and previous is that there's a whole internet full of people telling him he's deathly ill and anyone who doesn't recognise his "brain fog" (what does that even mean?) is a covid denier and a right wing hater.

I’m sorry, that’s very difficult and it sounds like nothing you can say or do will make a difference so for your own sake I’d take a big step back.

I’m not sure why posters are diagnosing him or insisting you help him when it’s clear you’ve tried and whatever you say to him he’ll resent it.

I’ve had long covid for the last two years and I was fortunate enough that I was referred to the Long Covid Clinic at a major London teaching hospital. I’ve seen various specialists and had support that I would have struggled to get otherwise, and have improved hugely since then. I had issues with ME in my late 20s, in the days when hardly anyone would believe it was a real condition, and had to spend a small fortune which I didn’t have on getting treatment privately because the NHS didn’t recognise what was wrong with me at that time. I was expecting the same lack of support when I developed long covid symptoms but the sense of relief I got when I first went to the clinic was enormous, and everything that I was experiencing was taken seriously and I saw the specialists I needed quickly. Now that I’ve had a significant improvement, Ive been discharged from the clinic but referred to the online community for ongoing self support. I had an awful experience 40 years ago with ME and the total lack of understanding from so many people, and was very pleasantly surprised that things had moved on so much over the years, so I’m a bit saddened to read this thread.

Well, at the risk of ‘diagnosing’🙄him, l have been through this and have been unable to move at all or eat as l was so severe.

After an illness or shock the brain can switch into overprotective mode. All it wants to do is keep you immobile and preferably in bed. To keep you safe from anything else. To do this it has to produce symptoms to keep you there. In your brothers case it is producing asthma symptoms to do this. And the tests show nothing. This underscore the fact that the brain is producing the symptoms. Your db gets more scared, the brain produces more, and throws in brain fog too. You can’t do anything dangerous with brain fog, it’s too debilitating.

It will keep doing this until he calms his nervous system. It mimics symptoms. But he’s not driving it, it’s not pyschological, the brain is acting autonomously to protect him. His brain feels he is unsafe and protects him.

There are ways out. I found one. But it takes a paradigm mind shift. Get him to watch that video. That’s what changed mine.

He needs exposure therapy.

@AnneLovesGilbert yes , he resents everything, that's what's so hard. He's angry at everything, everyone, so I can't talk to him normally, everything I say has to be prefaced with "of course I know your life is hard with your condition" before I even get to chatting about mum falling over or whatever. If I don't do that he gets angry and before I know it we're back on the long covid. I try to remember when his appointments are and message him when they happen because I know he doesn't do much else but if I miss messaging after one he gets really cross.

I think when PP said the "asthma was created by his brain", she's referring to the fact that in a huge no. of studies, it's been shown that there's no relationship between long covid diagnosis and lung function. Aka most people with breathlessness and a LC diagnosis have nothing physically wrong with their cardio pulmonary systems.

"Asthma" (even "atypical Asthma") is not the correct term for what he has. Asthma is a pretty broad range of syndrome/s due to multiple causes and variable severity but it's characterised by airway inflammation. He doesn't have that (if he's had the tests which exclude it). If he's got breathing issues, whatever their cause, it's better called dyspnoea (basically meaning abnormal breathing) which may be psychosomatically caused by his own belief in his health issues, or might be the result of deconditioning, or plenty of other factors. Like PP said though it (and other issues) can often be resolved or improved but it's hard work. I sadly think it sounds like he doesn't want to work on it.

Ah sorry @ArseInTheCoOpWindow posted my take on your original post before I'd read your more detailed update

Who diagnosed him with long covid?

He did

Thanks @FrodoBiggins and @ArseInTheCoOpWindow that is all really helpful. I guess I knew that there must be some kind of mechanism behind all this. I do think it's being fueled by the "long covid community" though.

Perhaps he needs you worse. At least to try and understand what he is going through. If he had some horrible forum of cancer would your attitude be different?

I acquired post viral chronic fatigue after catching the Swine Flu many years ago. To this day I still have flares that knock me for a loop and set me back. For a long time this is all I talked about as well because it insidiously took over my life and I needed all the help and support I could get. There is a horrible disillusionment that sinks in when you begin to realize you are in a sinking ship all by yourself. Not only do professional disappoint, but loved ones roll their eyes and want some type of solid proof.

Don’t kid yourself. We see it. And guess what. We want solid answers more than you do.

The first time I heard the term Long Covid I knew these people were going to suffer as I have and sometimes still do. I hoped more light would be shed on the mystery of post viral complications, and enough money, attention and acceptance would gain some real relief for our syndromes that are very real and very devastating in a chronic, long, drawn out, very demoralizing type of living hell.

Sadly we are still getting so let down from the ones who are supposed to care when something this awful is destroying life as we knew it. The very least we need know that our loved ones believe our dis-ease. I fear the politics of the pandemic are hurting more than helping.

I spent eons on the internet trying to help myself as nobody else either would or could. I got some good help for myself out of it. I hope your brother does also.

The mechanism is the brain is in hypoarousal or ‘freeze’ mode. It can be unstuck but it takes a lot of calming the system and exposure therapy.

And you have to want to do it.

Irrespective of whether he has long COVID or massive generalised anxiety or depression or whatever, he's making it very clear that he's not going to help you with your parents in any meaningful way at this time, OP. I understand that this is hard, but many of us don't have siblings at all or have siblings who are too ill, too far away or too useless/selfish to help out. I have no siblings and dealt with my parents' needs as an only child. I think in your position I would write him off, decide what my limits were in terms of what I would do for my parents, and look into support from health and social services, whether that's state funded or funded by your parents. I'm not saying you're not allowed to be angry with him or sad about his withdrawal but neither of those things will actually get you the help and advice you need right now.

(Edt: my best friend has long COVID and it is undoubtedly a real illness, I would not want this to be read as long COVID denial. I just don't think hyperfocusing on her brother's presentation is going to help OP right now.)

You’re lucky in that you don’t have it. I have/ have had severely limited lung function for the past 5 years. This has lead to sinus issues, ear issues, toothache, neck pain and the most horrible ongoing indescribable pain in my jaw and face. Absolutely debilitating.

I no longer am able to plan anything as I don’t know how much pain I might be in.

The pain also lead to a codeine addiction, which thankfully I’ve been able to stop as it wasn’t too high a dose.

It’s basically hell.

Brain fog means changes in cognitive function - slower processing speeds, lack of clarity in thought, difficulties with understanding language, forgetfulness, poor attention and concentration, expressive dysphasia. You would be familiar with brain fog as you probably experienced it as a mother of young children (of you have any) or during peri menopause (if you hit that stage), jetlag or simply after a very poor night sleep, hangover... It's not really difficult to grasp.

You clearly have no sympathy for the condition. That's a familiar picture for people with Long COVID which is why they gravitate towards online communities where people "get it". It's not entirely your fault, it's hard to grasp the real consequences the condition has on functioning. It's also hard to deal with people who make it their entire identity. I get it.

Your brother is clearly at the point of illness where he is grasping at straws. Look at it in terms of stages of grief. He is floating between dental, anger and bargaining. He has a long way to go till acceptance. You are going through your own stages of grief which are not dissimilar to his. Figure out how you can both arrive at acceptance together.

Realistically, there have always been people who prefer being ill to being well.

I have Fibro. I’m well aware of the processes that drive it and manage my symptoms fairly well. It’s harder to do things I don’t want to do than things I do want to do. I work hard at balancing paying attention so I can pace properly, and not being self absorbed and overwhelmed by my own situation. It’s really important to keep a sense of perspective and life beyond your own illness.

Some people prefer to be ill and it forms a key part of their identity. A good excuse for giving up on anything difficult.