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.

How many vaccines has your brother and this"community" had ?

Why?

People started getting long covid from the start of the pandemic, well before any covid vaccines.

Was that in response to me about OT? If so, does the OT you saw offer video/phone appointments for people who are housebound do you know? Thanks! 🙂

Yeah, whereabouts are you?

Greater Manchester

Was it a private OT you saw or NHS?

I have a friend who worked for the NHS during Covid. Covid/long Covid caused permanent heart problems including needing her heart rhythm to be ‘reset’ under general. She can no longer risk drinking alcohol or caffeine and pregnancies have been more high risk.

You are unreasonable for treating your brother’s symptoms as some kind of conspiracy that is an inconvenience to you. Count yourself lucky it’s not you going through all that. Sorry to hear your parents are also sick though.

She used to work at a Long Covid Hub, she’s private now.

I’m in S Yorks.

She does video calls.

I don’t have long Covid but I read some of the info as I have an ill child with diagnosed POTs and we are looking at pans or mcas triggered by diagnosed mould allergy and this can overlap symptoms of long covid.
But I do know the nhs now had long Covid clinics.
You are mixing two things up - your brother not wanting a test to formally diagnose him as having long Covid so he can access appropriate help is a red flag about his mental health. You however taking a pop at long Covid victims because they are seemingly feeding his mental health issues is unfair

Would you be able to give me her contact details please if you wouldn't mind? On here or over PM if that's better? Thanks!

I would be very grateful for her details too if she has been helpful

What is this test that would nail a diagnosis of Long Covid please? I thought it was a diagnosis made by excluding other possibilities, but if there is a specific test I'd really like to know! Thank you.

I have LC by the way. It is relatively mild compared to many cases, but has still utterly derailed my life. I used to be extremely fit and active and worked extremely hard alongside my parenting responsibilities. I'd say I'm operating at a third of my previous capacity. It's depressing.

There is no cure yet - doctors cannot do much. So it's hardly surprising people look online for things other people have found helpful.

I’ll contact her on Monday and dm you x

That would be great if you can, thankyou! 🙂

I’ve dm’d you.

thats what the homeopath who prescribed (nhs) told me to do when i was really unwell after one remedy.

i don’t see how less of somethimg could make it stronger?

The whole premise of homeopathy is that less of something is somehow stronger and will do more. You're right that it won't do anything though, at least not unless the patient believes it will so the homeopathy placebo effect is correspondingly stronger.

That’s how homeopathy works. The more dilute the remedy the stronger it is.

apparently it’s called creating a fractional dose.

its what a qualified nhs doctor at the homeopathic hospital in glasgow told me to do when a remedy was too strong.

i dont know the ins and outs of homeopathy, just relaying the info.

I think some people kind of choose it (not you). I knew someone who did a thesis or something on Victorian female "invalids" and the idea was that basically that some women in that era understandably didn't want to live the life that Victorian women were forced into and just sort of opted out. It was also, the argument went, linked to ideas in that period that being very weak and delicate and incapable of doing anything for yourself was admirably feminine.

In more recent times, I think some people "opt out" when life hasn't gone as they'd hoped - they'd rather live on benefits than do really terrible minimum-wage jobs or whatever. And then there's the people who don't integrate well into society due to their own behaviour / personality but would rather pretend that they're unemployed and isolated because they're "ill" (as opposed to saying "I've lost every job / friend I ever had because of my own lousy behaviour"). You'll find some stories of those types on the Stately Homes threads. Then there's the people with undiagnosed mental health problems or personality disorders, who would never seek any help or acknowledge there's a problem, but cover for things with supposed physical problems. (Again, Stately Homes). Then there's plain old manipulation and attention-seeking. And people who drink way too much but won't face it. And people with other fixable lifestyle factors which are causing them problems, but they don't want to change. "Illness" can, sometimes, be a way of avoiding facing things and doing hard things.

Lets hope you dont get it then. We can suggest youre imagining it or you like the lifestyle of poverty etc

Some people are genuinely content to be sick, they have no fight in them. Its very sad, but they need mental health counselling more than anything 'physically medical'. It doesnt sound like he wants to be better either.

Some internet chat rooms are cult like. They persuade you that your life is terrible, symptoms unbearable, everyones out to get you, nobody but the other members understand you etc... He needs less Internet and more fresh air!

Unfortunately OP you have 3 options:

1 - Dish him up some cold hard truths and deal with the silent treatment for a while. He will either come around OR (more likely) he will push you away and retreat into more of a "poor me" attitude.
2 - Continue to listen to his wingy moaning. Adopt a good "yes dear" voice and accept hes a gonner tbh.

3 - Scale back contact - but don't bother asking about his health, just contact him about fun stuff (sending him silly videos or contacting him reminiscing about positive memories etc...) Don't get dragged down when he mentions his health or conspiracy theories, when he acts all poor me poor me, change the subject on him. The more you feed these people the worse they get and the more self centred they become.

😡this is vile.

Ive been bedbound for 2 years.

My db cut contact because of hateful attitudes like yours. Well fuck him.

Let’s hope you never get a soul destroying illness.