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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

The long covid sink hole

270 replies

Cortrach · 02/01/2026 00:00

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.

OP posts:
ruethewhirl · 04/01/2026 17:45

ArseInTheCoOpWindow · 04/01/2026 17:11

😡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.

Hear hear. @Hufflemuff I don't know what happened to make you so cynical, but let's hope you're never struck down by a major illness yourself, eh? Even though it would probably force you to re-examine some your ignorant beliefs. 'Genuinely content to be sick'? Do you actually realise how offensive that is?

CurlyhairedAssassin · 04/01/2026 17:55

ArseInTheCoOpWindow · 03/01/2026 00:01

They told me it was. It’s lower cognition than unravelling knitting though!

I don’t think it is low. All the decisions about colours. That’s high thinking to me.

You pick up ANY colour. There doens't have to BE any decision-making, apart from "pick up the pencil and start making a mark on the page". Even young toddlers can do that, they are doing very little executive decision-making there, about what colour to pick. You could even just close your eyes and pick up a pencil.

To be honest, what you've described about yourself sounds more like a form of depression or maybe more general overwhelm which feels like there's no way out of. Which yes, can start after severe fatigue while recovering from a physical illness. Most of us, for example, know what it feels like to be off work ill or after an operation for more than a week. It can feel really daunting returning to work, you feel out of the loop, scared to put yourself back out there. Your heart races, you feel like the new girl again, you tell yourself you can't do it, everyone has forgotten you, no-one has missed you being there, you can't remember how to even log in to your computer, you wonder how you can get through the day without a snooze after lunch like you've been used to, how you will cope with the early starts when you've been used to getting up after enough sleep, how will you cope when you have to rush your lunch break.

If you're a woman of perimenopausal/menopausal age with hormones already creating havoc causing all the usual, often severe, menopausal anxixety and brain fog and fatigue, with even a small amount of neurodiversity on top, then it can feel insurmountable. Add on the stress of being in a high-level or pressurised job, with a lot of responsibility or deadlines, perhaps some past severe trauma that you haven't ever dealt with properly, and it all feels like not just a mental impossibility but an actual physical one, with real physical symptoms.

I think that long covid DOES exist, and can maybe flare up and down when your immune system is under attack, but I think that in a lot of people who have it, then all the other stuff above can just make it feel so much worse.

ruethewhirl · 04/01/2026 17:59

NooNooHead · 02/01/2026 12:42

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.

Too true. I have ME and can relate to your description of brain fog. I think some of those who are lucky enough not to have experienced it perhaps equate it to how they feel on a day when they're a bit below par and their brain's a bit sluggish. Not the same thing at all!

Sunflowerlane · 04/01/2026 18:03

It's very ironic that people like @Hufflemuff and the op accuse chronically ill people of being self centred. Zero self awareness. But that kind of behaviour is very common, sadly a lot people with a disability/chronic illness have experienced something similar at some point.
I have a progressive disability that worsened by the time I was in my late 20s and affects my mobility quite a bit. Someone close to me behaved quite a lot like that.
Everything was about them, how annoying it was that I could no longer do all the activities I used to do with them, or all the favours I used to do them. They told me that by using a walking stick and referring to my disability as a disability that I was accepting my condition instead of fighting it, and that I could heal myself by willpower and positive thinking if I only decided that I wanted to. Some people are very stupid and very cruel. I'm glad the OP's brother has people to talk to about what he's going through, he'll need it.

ArseInTheCoOpWindow · 04/01/2026 18:06

CurlyhairedAssassin · 04/01/2026 17:55

You pick up ANY colour. There doens't have to BE any decision-making, apart from "pick up the pencil and start making a mark on the page". Even young toddlers can do that, they are doing very little executive decision-making there, about what colour to pick. You could even just close your eyes and pick up a pencil.

To be honest, what you've described about yourself sounds more like a form of depression or maybe more general overwhelm which feels like there's no way out of. Which yes, can start after severe fatigue while recovering from a physical illness. Most of us, for example, know what it feels like to be off work ill or after an operation for more than a week. It can feel really daunting returning to work, you feel out of the loop, scared to put yourself back out there. Your heart races, you feel like the new girl again, you tell yourself you can't do it, everyone has forgotten you, no-one has missed you being there, you can't remember how to even log in to your computer, you wonder how you can get through the day without a snooze after lunch like you've been used to, how you will cope with the early starts when you've been used to getting up after enough sleep, how will you cope when you have to rush your lunch break.

If you're a woman of perimenopausal/menopausal age with hormones already creating havoc causing all the usual, often severe, menopausal anxixety and brain fog and fatigue, with even a small amount of neurodiversity on top, then it can feel insurmountable. Add on the stress of being in a high-level or pressurised job, with a lot of responsibility or deadlines, perhaps some past severe trauma that you haven't ever dealt with properly, and it all feels like not just a mental impossibility but an actual physical one, with real physical symptoms.

I think that long covid DOES exist, and can maybe flare up and down when your immune system is under attack, but I think that in a lot of people who have it, then all the other stuff above can just make it feel so much worse.

Thank you for your diagnosis. I’ve already had plenty of gaslighting from doctors without you.

Its not fucking depression. I’ve had that plenty of times and it is NOTHING like.

Also l’m not working. I couldn’t get to the bathroom for 2 years. That kind of precludes work.

MewithME · 04/01/2026 18:44

ArseInTheCoOpWindow · 04/01/2026 17:11

😡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.

Which is why I stepped away from the thread. Nothing to be gained by reading comments.

Hope everyone who has LC or MEcfs or other energy limiting illness just protects themselves and steps away too.

I won't spend precious energy trying to convince people to change their ignorance and hateful attitudes. Self preservation is essential with this thing. Limit stress.

Turn to those who give support and understanding. Turn away from those that do not. Flowers

Elsvieta · 04/01/2026 18:44

Did he work before covid? And does he now? What does he say his symptoms are?

You do seem quite determined to dismiss and disbelieve him, and to refuse to try to grasp the concepts. I mean, brain fog is a pretty common phrase (certainly when you talk to menopausal women). Long covid exists, and so do online communities - they're often helpful to those who are housebound by illness or who have rare conditions (as I found when a relative was dying of a very rare one - never met any of them in person, but they helped). MN is a kind of community, and often provides help of all kinds to those who can't find it in person.

But anyway. Nobody here can tell you whether he has long covid or not. But he has something wrong - if he doesn't have a physical issue but is determined to believe he does, he has a mental issue. There's something wrong. You can't fix it and you can't make him help with your parents, or even take an interest in them. I think you need to just accept that you're among the many people with elderly parents whose siblings are not going to help - whether it's because they're ill, because they don't live close enough, or just because they're lazy selfish arses who refuse to. The upshot is the same - he's not going to do it. I think you need to make up your mind what you're going to do, and help your parents come up with a plan for the rest. Same with your brother really - decide what you will or won't do for him, and stick to the plan. Your anger with him isn't going to make him act differently; make up your mind that that's going to cut both ways. Neither one of you gets to control the other. Good luck.

landslide51 · 04/01/2026 19:08

I get it OP, I knew 2 people with ME and there was no doubt they had it, it had a huge impact on their lives.

I now have someone in my family who supposedly has it, he does very little at home and constantly goes for a lie down, he loves to post all over FB about it, join groups and it has become a big part of his identity - but if he wants to fly to the far side of the US and go out and about with friends there for a couple of weeks then he can manage that just fine.

I'm not convinced he has ME as it only seems to effect him when it's convenient which isn't my experience of others with it. I stepped away and have as little to do with him as possible now. You can't control your brother, you can only control how you respond to it. Either you accept who he is or you step away for your own sanity.

TalulahJP · 05/01/2026 12:13

CurlyhairedAssassin · 04/01/2026 17:55

You pick up ANY colour. There doens't have to BE any decision-making, apart from "pick up the pencil and start making a mark on the page". Even young toddlers can do that, they are doing very little executive decision-making there, about what colour to pick. You could even just close your eyes and pick up a pencil.

To be honest, what you've described about yourself sounds more like a form of depression or maybe more general overwhelm which feels like there's no way out of. Which yes, can start after severe fatigue while recovering from a physical illness. Most of us, for example, know what it feels like to be off work ill or after an operation for more than a week. It can feel really daunting returning to work, you feel out of the loop, scared to put yourself back out there. Your heart races, you feel like the new girl again, you tell yourself you can't do it, everyone has forgotten you, no-one has missed you being there, you can't remember how to even log in to your computer, you wonder how you can get through the day without a snooze after lunch like you've been used to, how you will cope with the early starts when you've been used to getting up after enough sleep, how will you cope when you have to rush your lunch break.

If you're a woman of perimenopausal/menopausal age with hormones already creating havoc causing all the usual, often severe, menopausal anxixety and brain fog and fatigue, with even a small amount of neurodiversity on top, then it can feel insurmountable. Add on the stress of being in a high-level or pressurised job, with a lot of responsibility or deadlines, perhaps some past severe trauma that you haven't ever dealt with properly, and it all feels like not just a mental impossibility but an actual physical one, with real physical symptoms.

I think that long covid DOES exist, and can maybe flare up and down when your immune system is under attack, but I think that in a lot of people who have it, then all the other stuff above can just make it feel so much worse.

No offence but you don’t know what you are talking about.
you clearly have never had ME or similar (CFS or long covid etc) as you don’t understand.

It’s not cut and dried the way you think it is.

You are basing your presumptions about sufferers capabilities on adults/children who DONT have ME. It’s easy for a healthy child to pick up a pencil. A child who DOES NOT have ME.
It’s not the same.
You’d be as well telling someone with parkinson’s to stop their hand shaking, after all a baby doesn't have a shaky hand….

If you don’t know what you’re talking about please don’t say things on threads that makes other people who don’t understand think there could be some truth in what you say. Thats how general ignorance spreads. Im not trying to put you down. Im trying to help you learn. So i hope you’re not offended.

There is no truth in what you say. ME is not some kind of thing you switch in and off so you can colour in. It’s fucking horrific and life changing.

Yes menopause symptoms happen and people can be run down and suffer from blah blah. Im not disputing that stuff you said. Just your presumptions about ME being somehow controllable or something. a mind over matter. Depression.

It’s not. It’s all consuming. If a poster says thwy dont have the energy to think about choosing a coloured pencil then i’d agree with them as i’ve been there. it really is that bad. it’s awful. I’ve had depression and it feels very different.

Dont get me wrong, my gp was as ignorant of the workings of the ME body as you are. He was telling me to “start short walks up the path gradually increasing them”. I couldn’t walk across the room or even get upstairs to the loo. I’d wait until busting and then walk up slowly on my hands and feet. i was knackered. He was talking crap. I couldn’t do it. Im not lazy or a malingerer.

Previously i had two horses a full time job and three night school courses on the go simultaneously. loved it. so that proves i was not lazy or stupid. i was very fit from riding and physical mucking out etc. My brain was used in my day job that i loved. i was busy energetic and happy.

Then i got a virus and was ultimately housebound.

It can happen to anyone.
You will never be the same again. It does teach you a lot though.
Not all of it good. i lost a lot of friends whi thought like you do that it was me being lazy or stupid. it’s not. it’s awful.

oldtiredcyclist · 05/01/2026 15:21

ArseInTheCoOpWindow · 03/01/2026 15:21

Why?

Because, as well as the many people who have Long Covid in the UK (like my previously fit 45y/o neighbour), there are also a sizeable number of people in the UK who have been seriously injured by the Covid vaccines (like myself). People are still not willing to talk about this, but the UK Covid Inquiry from May 2024 gave some shocking statistics for the injured and the deceased. Please see page 71 of the attached report.

https://covid19.public-inquiry.uk/wp-content/uploads/2024/05/23094440/C-19-Inquiry-Mod-4-prelim-22-May-2024-amended.pdf?fbclid=IwY2xjawNHEupleHRuA2FlbQIxMAABHhCL3Gsap0ZxSAPowRB-pypRih9laP05GeZMckLa9d2pixnzQvHpj4_TYvMP_aem_AW5PbUHREeigSwRnJCWRSQ

https://covid19.public-inquiry.uk/wp-content/uploads/2024/05/23094440/C-19-Inquiry-Mod-4-prelim-22-May-2024-amended.pdf?fbclid=IwY2xjawNHEupleHRuA2FlbQIxMAABHhCL3Gsap0ZxSAPowRB-pypRih9laP05GeZMckLa9d2pixnzQvHpj4_TYvMP_aem_AW5PbUHREeigSwRnJCWRSQ

NooNooHead · 05/01/2026 15:34

oldtiredcyclist · 05/01/2026 15:21

Because, as well as the many people who have Long Covid in the UK (like my previously fit 45y/o neighbour), there are also a sizeable number of people in the UK who have been seriously injured by the Covid vaccines (like myself). People are still not willing to talk about this, but the UK Covid Inquiry from May 2024 gave some shocking statistics for the injured and the deceased. Please see page 71 of the attached report.

https://covid19.public-inquiry.uk/wp-content/uploads/2024/05/23094440/C-19-Inquiry-Mod-4-prelim-22-May-2024-amended.pdf?fbclid=IwY2xjawNHEupleHRuA2FlbQIxMAABHhCL3Gsap0ZxSAPowRB-pypRih9laP05GeZMckLa9d2pixnzQvHpj4_TYvMP_aem_AW5PbUHREeigSwRnJCWRSQ

Bless you, I understand how hard it is to be injured by a medication meant to help.

I was permanently injured by off label antipsychotic prescribed for severe insomnia and anxiety after a head injury and post concussion syndrome.

As a result, I now have a neurological involuntary movement disorder called tardive dyskinesia that is like Tourette's and Parkinson's disease and it's awful. You're right, people truly don't really understand unless they have experienced it.

Barrenfieldoffucks · 06/01/2026 22:54

UneAnneeSansLumiere · 02/01/2026 23:31

YANBU to feel that Long COVID can be a bit of a con. I'm not saying that it is in all cases, but let's just say that the people I know who have it are exactly the people I would expect to have it. I think that you are being somewhat unreasonable about your parents. I get where you're coming from because it is a bit similar in my family, but actually I don't think it's reasonable for elderly parents to expect their kids to exhaust themselves looking after them. If your brother doesn't want to do that he doesn't have to and neither do you. That is what the care system is for.

Indeed. None of those that I know who have it meet the ‘type A overachievers’ description on here.

ArseInTheCoOpWindow · 06/01/2026 23:34

oldtiredcyclist · 05/01/2026 15:21

Because, as well as the many people who have Long Covid in the UK (like my previously fit 45y/o neighbour), there are also a sizeable number of people in the UK who have been seriously injured by the Covid vaccines (like myself). People are still not willing to talk about this, but the UK Covid Inquiry from May 2024 gave some shocking statistics for the injured and the deceased. Please see page 71 of the attached report.

https://covid19.public-inquiry.uk/wp-content/uploads/2024/05/23094440/C-19-Inquiry-Mod-4-prelim-22-May-2024-amended.pdf?fbclid=IwY2xjawNHEupleHRuA2FlbQIxMAABHhCL3Gsap0ZxSAPowRB-pypRih9laP05GeZMckLa9d2pixnzQvHpj4_TYvMP_aem_AW5PbUHREeigSwRnJCWRSQ

I had 2 severe vaccine injuries as discussed in LC inquiry. Although they still aren’t accepted by the VDP scheme.

6 weeks after recovery from year long 2nd vax injury l caught Covid and then, no suprise got severe LC.

I wish Covid had never existed. It’s destroyed my life for 5 years.

Sbmpp · 06/01/2026 23:55

My husband has long covid. He is a health care professional (RRT). He managed to make it through 2023 before catching covid around Thanksgiving. He went back to work as soon as he tested negative (gave it to me too:). A few months later several of his coworkers told him they noticed he was always short of breath (I noticed he was sob just walking from one room to the next). Long story short he had long covid and his lungs were 60% of normal. Little is known about long covid. Including whether or not it’s progressive. He has regular follow ups and is now on oxygen. He never complains. He doesn’t follow any support groups. He puts one foot ahead of the other and tries his best. He retired a month ago or so. Long covid is a nightmare for him though. It’s only now that he’s started even talking about what working through the pandemic was like. It was a nightmare for all the healthcare providers. I am grateful he’s alive and doing as well as he is.

Sbmpp · 07/01/2026 00:41

P.S. My husband has never complained of brain fog, weakness, fatigue etc (it may be he does experience them but wouldn’t let me know 🤷🏻‍♀️). He was given a barrage of tests including CTs, pulmonary function tests (pft), stress tests, X-rays and so on. His diagnosis was pulmonary fibrosis caused by long covid. It seems like there are quite a few women who aren’t believed to have lc due to having different symptoms. Smh 🤦🏻‍♀️

CheekyDreamer · 23/02/2026 21:51

What an awful sister you are. I have had long Covid for the past 5 years. I have progressively got worse over the last 10 months by continuing to try to push myself to be normal to the point I am now bedridden. Despite this I am still positive and certainly not depressed. So the people saying depression causes it are grossly misinformed. I want nothing more than to be normal again but I know I have to be very careful or I will go back even further. That includes not talking on the phone too long as it can cause symptoms that make you feel incredibly unwell-bradycardia/tachycardia, heart/chest pain/dizziness/weakness etc. I am incredibly lucky to have an amazing family around me (including my sister) to help me rest in order to hopefully get better. I feel so bad for your brother not having the support from the one person who should give it. It’s a very lonely, isolating condition made even worse by people like you who have the cheek to don’t believe people and think they would purposefully want to live like this! Walk one day in your brothers shoes and I’m sure you would have some compassion then!

oldtiredcyclist · 24/02/2026 07:16

CheekyDreamer · 23/02/2026 21:51

What an awful sister you are. I have had long Covid for the past 5 years. I have progressively got worse over the last 10 months by continuing to try to push myself to be normal to the point I am now bedridden. Despite this I am still positive and certainly not depressed. So the people saying depression causes it are grossly misinformed. I want nothing more than to be normal again but I know I have to be very careful or I will go back even further. That includes not talking on the phone too long as it can cause symptoms that make you feel incredibly unwell-bradycardia/tachycardia, heart/chest pain/dizziness/weakness etc. I am incredibly lucky to have an amazing family around me (including my sister) to help me rest in order to hopefully get better. I feel so bad for your brother not having the support from the one person who should give it. It’s a very lonely, isolating condition made even worse by people like you who have the cheek to don’t believe people and think they would purposefully want to live like this! Walk one day in your brothers shoes and I’m sure you would have some compassion then!

So sorry to hear what you have gone through. With regard to the heart/chest pain and other cardiac problems, have you seen a cardiologist and had all the various important tests carried out - ECG's, echocardiograms, Cardio MRI's, angiograms etc.
Unfortunately in my case, they ignored all the "abnormal" ECG's starting in August 2022, until the blackouts/seizures got increasingly worse. I told them it wasn't like normal fainting episodes, it was more like I was drifting away.
In July 2025, I was fitted with an Implantable Loop Recorder, which monitored my heart and they found that these blackouts were down to my heart stopping, several times a week from 8 seconds to 14 seconds at a time, which really shocked me. It culminated in a major episode on 1st October 2025, after I had a cardio MRI scan. I was at the station with my wife waiting to go home, when I could tell I was about to black out. I did and paramedics were called, I was taken back to hospital and it transpired that my heart had stopped for 25 seconds.
On 7th October, I had a pacemaker fitted, something which in my opinion, should have happened two or three years previously.
Please keep pressing for information and answers, it is your health and your future which is at stake.

SDTGisAnEvilWolefGenius · 24/02/2026 13:06

I have been doing physio (from a physiotherapist who knows about long covid and is experienced in treating it) for over a year, and I have still gone down hill to the point where I got a wheelchair yesterday. I started with a walking stick, then got a rollator/wheeled walker, and now the chair, so I can actually go out and do normal stuff like going to the supermarket.

I want to believe that I will eventually recover, but it is getting really difficult to maintain any optimism.

MindYourUsage · 24/02/2026 13:54

It is actually scary what kind of nasty numbers viruses can do to the human body; with permanent damage. Not just COVID but regular flu, too. Most people "get away with it" but some unfortunate souls are never the same again.

I have tinnitus from my 2022 COVID infection. I guess that counts as long covid, but I agree about backing away from the forums and communities. Surrounded by all that just drives you into a deeper pit of dispair.

(PSA - get your flu jabs! Well... too late now but... next Autumn)

JaceLancs · 24/02/2026 23:42

Just thought I’d update as this thread popped up again
Recently remembered I had glandular fever when I was at younger end of high school and was exhausted for months - DM did not believe me and forced me to do things that I struggled with - I’m feeling like that reading the recent posts
Ive now had a brain scan which ruled out MS, spinal scan showed lots of issues relating to a serious road accident I had years ago which current medics dismissed completely
Just had nerve conduction testing which showed abnormalities but am waiting to see consultant to discuss
Got an imminent rheumatology appointment which I’m optimistic about
Chest bad again - am on third lot of antibiotics since Xmas and struggling to breathe but apparently im only allowed 2 lots of steroids in 12 month period other than inhalers and I’ve already had my share! Perhaps I should just stop breathing quietly!
Got urology op in a few days so something else to look forward too, I’m still managing to keep both jobs going but only at the expense of having little life outside that
I sometimes feel that I live my life through a self imposed time and motion study - I don’t do anything without considering the least effort and pain it will cause and how much energy I need to conserve to get through the next event - I hate having to pace and plan to avoid the worst symptom flare ups and even then I get hit when I’m not expecting it
One day last week I was experiencing a rare good day and decided during my lunch break to walk a bit further than I would normally try, it went badly wrong, whilst out I became exhausted so took refuge in one of my local frequently visited coffee shops - recovered a bit but then needed the toilet - disabled was unfortunately out of order - tried to manage the stairs but failed miserably then had to call a taxi as I couldn’t get back to work or where I’d parked my car - took me days to recover!

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