Long Covid in Adults

And everyone’s got these stories of not being listened to or being dismissed by doctors and because Long Covid has been happening to people since last summer but not necessarily recognized by anyone or many people as a real thing until really Christmastime I think people started to really pick it up. So last year was very frustrating because you’re feeling this way. And I was lucky, I saw doctors that did seem to believe in it and understand it, but so many people didn’t; they had some very bad experiences. So, that’s why the groups have been so key to just keep yourself sane, having someone to speak to [laughs]. Because it’s difficult, families and friends don’t get it. I’ve gone from being this active, fit, buzzing around person to someone who barely leaves the house and has no energy to do very much if I do. It’s very small things. So, I just go to pick up a bit of shopping at the, you know, Tesco click-and-collect is about my event of the week [laughs]. So, it’s hard for people to understand, so you need that support, you need those groups.

But it’s one of the things, you don’t, I didn’t know what was going on at the time with my body either, so I didn’t have, I couldn’t go to my boss and say, look, this is what’s wrong with me, I need time off. Because, like, I just kind of felt generally unwell…
 
And how did you, did you discuss it at work?
 
Yeah, some of the people at my work, I spoke to my boss, and I spoke to my boss’ boss, my line manager, and his manager. And you kind of get different, some people just think, aye you’re a hypochondriac, there’s nothing wrong with you. And there’s people that don’t believe in Covid, still, you know what I mean [laugh]? So, it’s like, it’s quite frustrating. I mean, I’m lucky, my top line manager, he’s been really understanding about it. And I get the impression he believes me, and he’s been really good, he’s basically said, if you’re struggling let me know. He’s let me away for all my appointments, and stuff like that. But then you get others that are kind of old school, you’ve got guys that don’t believe in Covid, never mind Long Covid. So it’s like [laugh]. To be honest, Kate [name of interviewer], I was the kind of guy that, people with, like, ME and stuff like that, I’d have probably thought, oh they’re at it. But see now, this has opened my eyes to a lot of things. Poor people are struggling, I’ve realised that these people are struggling, and yeah. I used to, I don’t know, it’s kind of opened my eyes to a lot of things, this, a lot of health issues.

What responses have you had, personally, when you’ve told people about your ongoing symptoms?
 
A lot of people are in disbelief, I think that they didn’t know, they don’t know that this is happening. I forget because I have been in the thick of Long Covid for over a year, fourteen months. So, I assume everyone has heard of it, and everyone knows about it, but a lot of people haven’t, and don’t appreciate that people are having such prolonged symptoms. Some people mean really well, and I feel are being very kind, but they’ll say, oh yes you must be feeling very anxious. Sorry, I don’t know if you heard that. But they’ll say, you must be feeling very anxious, or you know, anyone would feel depressed having your symptoms. So, they’re subconsciously, perhaps, attributing a lot of what I've been going through to psychiatric symptoms which isn’t right, really. And some people genuinely seem terrified, and horrified, and are worried for themselves, I think. Because you know, they empathise, and they wouldn’t want this condition as well.
 
There are also people who are close to me who I think, maybe, their way of coping with it, because it has been a long illness, and I have been really, really sick, their way of coping is to try and reason through it, by attributing the symptoms to something else. Like, I've been asked, well could you be menopausal, you know, are you sure it’s not the menopause. Or, you know, is it your thyroid, you know, they just want something concrete. And I think the difficulty with Long Covid is, at the moment, there’s not really anything concrete. There are studies that are coming out which are demonstrating, you know, the mast cell overactivity, the autoimmune components, the dysautonomia. But until we have a robust network of evidence, I think that it’s all a bit nebulous, really, and people find that really difficult. And I have found that really difficult.
 

So, basically, a year now I’m still not functional as much as I want to be and it just take time and she keeps saying, “There must be something else that can be done.” I say, “No, mum, it’s all up to me managing myself and me managing my medication and me being a part, we have limited capacity to do things and we have to accept that.” It’s very sad now because I am quite disabled. And I’m young. I’m not old. I don’t look like a different person. It’s like a hidden illness which, because when you see a person or a person like me, they will say, “How could possibly anything be wrong with you?” An expectation of the community of perception of how disabled or chronic person will be. They have to look miserable. They have to look not well dressed, you know, they must have maybe a wheelchair on or drips or something, I don’t know. You know, that’s the kind of look they are expecting but when they look like somebody like me, they can’t put it together that that’s how I am.

So, yeah, and I mean I’m very, very grateful and I think also very unusual in that I don’t think I’ve ever been knowingly disbelieved. Whereas it was very common, and probably still is, not as much now but in the early days it was completely, everybody was being disbelieved.
 
Because my GP from the beginning knew, even though I didn’t, I mean I didn’t really know my GP ‘cos I’m not one to have gone to the doctor’s over the years, so she was brilliant and she’s kind of trusted me to, you know credited me with having a brain in that didn’t try and pretend, “Oh go and have this,” or, you know, “Have some antibiotics, or have some paracetamol,” or whatever, just, “I’ve no idea how to help you. You know more about this than me, what would, what do you think might help? What do you think?” You know, so I was massively, a huge respect for that because I know from people in our group that some of the most upsetting and most, biggest causes of anguish and trauma have been by not being able to access medical help and being disbelieved, gaslit.
 
My family, again, have never questioned it. All my Facebook friends, I remember one woman who I used to, who I sing with, who I get on well with, but hardly ever see. I might go for a cup of tea once a year at the most, but not even, she said, “Oh if Claire [name] says it’s bad, it must be bad.” And I was like, “Wow, that’s so lovely that you’ve said that.” And that was kind of the attitude of what a lot of people seemed to have, so I’m really grateful for that. But I’m also very unusual I think in not having faced it.

What’s your sort of general sense about the general public’s understanding of and attitude towards the idea of Long Covid? Have you had any experience of that?
 
I definitely think it seems to be an accepted fact that it exists. I’ve not had somebody say to me, oh, it’s a load of old rubbish, and it doesn’t exist. It, you know, it’s part of the general conversation. Nobody says, Long Covid, what’s that? No, I don’t believe in that. People say, oh, it’s really interesting, isn’t it? And my friend had this, this happened to them, and my dad still feels like this. So, it’s there as a kind of a real thing, nobody’s suggested to me that, well, you know, that’s a load of rubbish. Admittedly I don’t know many Covid deniers or anti-vaxxers, so, you know, maybe in that community there’s a bit of denial going on, but yeah, it seems it’s one of those things that, say you know, accept exists and everybody says we really don’t know much about it, do we, you know? There’s going to be loads to come out on this that people understand.
 

Yeah, so I mean as an example we managed to get away to North Wales over New Year and it was the first time I’d seen my wider family, so I’m one of seven children and my brothers and sisters have sort of kept in touch sort of periodically but I don’t think, unless you’ve lived with someone who is experiencing this, I don’t think they can fully understand it so that was, we were, you know, went down to the beach and, you know, even the little toddlers were walking for a lot longer than I was and that was, you know, I just had to sit on the rock and wait for them while they carried on the walk and then they came back. And you know, it feels strange, but I’ve sort of got over that really. It’s more, it feels like for other people, I think other people are a bit…I mean my sister was just in tears with me saying how sad she was for me, and I suppose I’ve got beyond that, really [laughs].
 
I mean actually that was, once again one of my questions how family are responding because one of the issues that sometimes comes out is, as you’ve alluded to, is sometimes other people don’t really understand.
 
Yeah, I think that’s definitely been a journey for us as a tiny little family, the three of us in our household and part of that is that it takes a lot of energy to explain to people what you’re experiencing and if your condition is one of, you know, a constant state of fatigue sometimes you don’t have the energy to explain but people are only, even your nearest and dearest, you know, I think are only able to comprehend so much from, you know, observing and witnessing, you know, how you’re doing and I, you know, I’ve had to be quite proactive about explaining what I can and can’t do and, you know, maybe giving reasons for that. But I do think now two years on [wife] and [daughter], they couldn’t be more understanding and, but that, that’s taken, that’s been quite a journey and there have been frustrations, you know, I’m sure they have been frustrated by me at times and I’ve been frustrated when I feel like people don’t understand or people maybe don’t have your best interest, it feels like they don’t have your best interest at heart.
 
And I also think one of the symptoms of the condition, there’s some vicious circles here if you’re not careful. One of the symptoms of the condition is, you know, post-exertional malaise from, you know, too much physical exertion or too much cognitive exertion or too much emotional exertion and I think one of the most unhelpful things is to get yourself in a position where you’re resenting family members or people that you live with for not understanding you because I’ve seen this myself, you know, where I’ve had some dips where you’ve gone into a period of like resenting or been frustrated with people and that takes, seems to take up a lot of energy, so it’s not worth, it’s just, if you can get yourself into a position where you’re able to, you know, talk about these things and have that understanding and I do feel like, you know, they’ve been incredibly understanding but that’s taken time as well.
 
That’s really interesting so it’s almost as if there’s a lot of tricky interpersonal relationship negotiation that has to be navigated.
 
Yeah and I’ve gotta be honest that’s in a context of people who love each other very dearly as well. It’s not like we, you know, we have a, my wife and I, you know, haven’t had a relationship that’s fraught or tense but, but this has certainly put, you know, a lot of pressure onto that and I mean part of that is because [pause for 6 secs] in some ways it changes everything, in some ways it changes nothing and that’s what some people have helped me to understand is that, you know, the things that I’m able to do don’t change, you know, who I am as a person, what I’m able to contribute to our sort of family and our relationships and I think that’s been, that’s definitely been something that I’ve learnt, because probably in the past I have defined myself by the things that I’m able to do, you know, around the house, taking people places, and all of a sudden when you can’t do those things you do question “Well what am I contributing here,” you know, to our family and I suppose people helping me to understand that, you know, just being who I am and the love that I give in conversations that we have and so on, that’s enough in itself.
 

No, I don’t think it’s well understood. I think the perception of it is you're a bit tired, and it’s not tiredness. I know for some people, it is. And I think there’s also a range of symptoms that people have. I'm not, I have the symptoms that I have, but that doesn’t mean that the next person has the same symptoms. And I think that’s where it becomes confusing because there’s such a range of symptoms. I think if it’s a particular disease, then the symptoms are understood, and they're known, and they're generally the same. But with this, it seems to have so many different permutations, that it’s hard, when you say to someone, I suppose if you’ve never experienced it, and you don’t know anyone who’s experienced it.

I actually, I took my youngest swimming one day, and it was just in the baby pool, there was that much water, I was sort of sitting, and a gran came and sat down, and was chatting. And we got onto the subject of Covid, and it’s ridiculous, everything is still closed, it's just a cold. And I could feel myself – and I didn’t even know this woman – and I could feel myself getting sort of frustrated, and, don’t say anything, don’t say anything. It’s just a cold, it’s a lot of nonsense, they shouldn’t be shutting everything down, it’s a total overreaction. And then of course, I had to, “Actually, I had it.” “Oh, I don’t know anyone who’s had it.” I said, “I've had it.” “Oh, and was it just like a cold?” And then I explained, and I said the symptoms I've been left with. And she was absolutely shocked, she said, “I've never heard anyone who’s had Long Covid,” and she was like “I'm really sorry that you feel like that, but it just, it seems unbelievable, I've never heard of anyone else who’s got it, I just thought it was something the media were saying, to keep us all in.” And I said, “No, it’s not” [laughs]. And she was a retired teacher, and we spoke about, obviously, that I wasn’t able to be at work, and she was just completely bamboozled by it. As if, you know, Bigfoot is real, it’s a real thing. And I said, it’s a real thing, it’s real, and it’s completely debilitating. And I said, I'm trying to bring him here, and he's playing in the water, I said, I couldn’t go into the pool and swim, I'd be out of breath. I used to be able to swim quite a lot, I like swimming I can’t do these things anymore, and it’s because of this, and that’s how I've been left. And I said, so you need to be careful, and she was like, oh. But it was like, you could almost see her mind shift and be like, well maybe I do need to be more careful and not catch this. Because before, she just thought it was nonsense. And so that was a really interesting one for me that her whole opinion of, it’s lies, Covid isn’t as bad as they say and it’s some sort of conspiracy to keep everybody locked in their house. I just thought it was just ridiculous [laughs]. But she was a really sensible woman, she was a sensible, educated woman. And you think, where does that come from, why do you think that? Because she hadn’t had first-hand experience of it. And a lot people I speak to say, “Oh yeah, I've heard about that, but I don’t know anybody who’s got it, I've never heard of anyone who’s actually got it, do you know anyone who’s actually got it?” Well, yes, I have it [laughs]. And it’s not nice, and it’s life changing, which is awful.

I don’t know. I mean, I think probably increasingly it is being better understood. Most people now at least have heard of it and know what it is. But I think it’s a bit like anything; they might have read one particular article and if it’s not particularly relevant for them and their life they might then think that that one article they read is sort of all that there is to it. So, you know, for example if they read an article, for example, on someone that’s got a particular set of symptoms and they’ve found doing a particular diet helpful they might think that’s what Long Covid is. So, I found with my own friends and family – and obviously, you know, I’m lucky, I’ve said before that, you know, people are willing to listen to me and I am quite open and do share a lot about things I’m trying and how I’m feeling and that sort of thing. But yeah, it’s a bit like anything that I think people, the general public only understand as much as they – if they haven’t actually got personal experience of it – as much as they…what they have heard or read about it which is probably less than someone that is going through it [laughs].

I tend to try and go over symptoms, to say what I'm experiencing. I think there are different sub-types of Long Covid, so there are people who have organ damage,…
 
Oh, you just cut out slightly there. Can I just double check you said cognitive?
 
No, organ, organ damage.
 
Organ, sorry, sorry.
 
No, not at all. So, there’s some people who have organ damage, so demonstrable pericarditis, for example. There are people like myself who seem to have a lot of the dysautonomic symptoms, possibly with, you know, an autoimmune element. There are people who were severely unwell and ended up in ICU and are recovering from that stress. So, it all kind of gets lumped together as Long Covid, but I think there probably are different sub-types. People’s understanding of Long Covid as well, is variable. Some people say, even now, what is that some people say, “Oh so are you just very tired, then,” and some people, on the lesser side, but some people have an understanding of all the different components, I feel like there is possibly a bit of stigma around it, I hate to say, but I think there probably is in that as I said earlier, I think some people think that there’s a strong psychological component to it. And really, that’s founded on nothing, that’s just based on assumptions, from what I can tell. And there’s very little understanding of the dysautonomia, and the myocarditis, the GI symptoms, and the autoimmune kind of stuff, but hopefully that will change with time.

What kind of responses do you get when you tell people about, you know…?
 
Most people think it’s still infectious. So, they draw away from you. So, it’s like, oh you know, and that can be anybody that’s gathering berries, you know, -on the walks that I go. You know, if I go, “Can you just give me a bit of space?” “Oh…oh what for?” “You know, I've Long Covid.” And they’re like, “Oh.” You know, and they think that they’re going to get infected and then it’s this…and people’s attitude to it is, kind of, strange. You know, I’ve now…a wee while back I thought, I would just explain to people, you know, people that I would normally meet on my dog walk and stuff like that… “Look, I have got Long Covid.” You know, if they move, I’d go, “That’s very respectful, you know, I have got Long Covid and it’s nice, thank you very much.” But even, you know, that attitude can change depending who they’re with. You know, so there’s like a dad who does the kids, if I meet him and his dog, he’s quite respectful. But when he’s out with the other mums and dads walking down the school – I live right on the school run, you know, you go down my road and the park, and the school’s in the park, sort of thing. He’ll just bash on past you. You know, and it seems to be quite, kind of a bit, kind of, strange, you know, how people react to that. I'm not—yeah, so when you tell them, you know, the response is usually that of, “Oh are you still infectious,” kind of thing. And then you kind of go through that.

But generally, I use the term Long Covid at present. I was aware at one point that I’d said, I’d sort of met people and I’d sort of said “Oh, I’ve got Long Covid,” and they’d almost like taken a step back and pulled their mask higher [laughs]. As if to think that I was still contagious or something. Which isn’t the case, but it might carry that sort of stigma a little bit, especially if people don’t understand it. So, I sort of, you know, obviously then reassure them that, you know, I’ve been testing negative ever since, you know, a week or so after the infection [laughs]; it’s just the after-effect so.