Family experiences of Long Covid

So yeah there’s just that a lot of people dipping in and out of his needs and what’s going on with him and within that we have to keep the school informed And, I mean the last week before Easter we took him out of school because they had Covid in school and the teacher went down with Covid and we just said “No, you know, you’ve got to keep us informed of what’s going on.” We understand that we can’t keep him protected from everything but because his immune system is so low the fear of him catching it again is scary.

The other interesting thing that is coming out is, you know, the HEPA air filters for classrooms. Because I definitely feel that in the lack, you know, considering the lack of treatment once they have got Covid or Long Covid, there’s not much there, we have to focus on prevention in these two years before we get protocols and, you know, evidence-based medicine out there. So [cardiologist name]’s school has two HEPA filters per classroom, and they’ve had no major outbreaks of Covid since January, other people on Twitter have had 50% of the class off since January, you know, because they’re getting reinfected. So, I just think in my mind in an ideal world I would send [daughter] back to school with two air filters in her classroom. Especially going into the winter.

And because you have Long Covid, are you worried about catching Covid again?

To some extent, yes I guess, but I don’t know if I do get it again because I’m already quite bad, I don’t know if it would make it even worse, but I don’t really know [sighs]. I am kind of worried but not as much as I was before. I think I’m...as I’m getting better, I’m less and less worried. I kind of do, sometimes I wear a mask but I’m not either/or, I’m not really worried to catching it I guess. I think only in school really because of the...everyone’s together, but in like a small supermarket where there’s not really anyone in there, I don’t really bother with the mask because there’s no one in there, so...but if it’s in the school where there’s loads of people everywhere and they’re all crowding onto each other, I think I’d...yeah, I do.

I mean obviously I feel scared – I’m not too scared but okay if I get it, I know what I can do now. I know what I can do. I know, I’ve have it twice already. If I get it a third time, hopefully I won’t. I will know what to do if I get it a third time. I know like how everything is because the second time I was not prepared for like anything so a third time I would be prepared, yeah.

So we kind of want to continue as normal but, you know, we’re still kind of protecting him and each other really, you know, we, my husband’s above 50, I’m of BAME background as you can guess, I’m at more risk, so there are those risk factors and age I guess, we are, you know, I’m nearing 50 but, you know, age works against us and, you know, we just, we don’t have much family around so we have to remain healthy in regards to, from a financial point of earning as well as just a general day-to-day living and being able to function as a family, we need to remain fit and able so that’s the kind of fear that I have because, you know, if I’m floored the whole family gets affected, perhaps more so than my husband because I’m the kind of main carer and organiser kind of thing, and the cook and all that kind of thing, so that’s the main thing.

Abigail: I don't want to catch Covid again because I know I'll like plummet again and I really don't want that to happen. So, like if someone has Covid, I'm like really nervous because I don't want to have it again, but I generally just try and like not worry about it. Like I do worry about it obviously because I don't want to get ill again but like...

Mum: You were a lot happier after you'd been vaccinated, weren't you?

Abigail: Yeah, I was happy after being vaccinated because I know that I was like less likely to get Covid if I've had the vaccine, and like even if I do, it’s going to be like a lot less significant.

I think the experience of having Covid, all four of us pre-vaccine, when you know we...none of us were eligible at that stage, that whole experience was pretty horrific, and I guess for me I’m like, ‘If that can protect me from ever experiencing Covid in the same way or protect me from developing different things as a result of Covid, then I’m all for it.’ If it can do the same for her, and protect her from suffering in the same way, or a similar way, then yeah, I’d 100%...I know, you know, she could still get Covid, but if it just didn’t have the impact that it did initially, yeah, I’d definitely want her to get it.

I’ve got my first jab, but then I haven’t got a booster or second or whatever. And now there’s like, I got it like just when Delta was like in its mid-stages, like before we found, I can’t remember what it’s called, but the new one—

Omicron.

Yeah. So I got it then, but now we’ve got Omicron?

Yeah.

Yeah, I realise, that apparently it’s meant to be like a lot worse than Delta and the one we had before, so then now I’m just like worried, like, why is no one getting a vaccine, like, so I got my first, now apparently it has like a few months where it works fine and then like it wears off, so if you’re going to vaccinate everyone then why don’t you vaccinate them fully, and like continue it? Which I understand the rollout like millions and millions of people, but still, they need to do their absolute best to like vaccinate, vaccinate, vaccinate, vaccinate.

Michelle: No, and we’re scared of the vaccine because of what happened to me. Because I know that...you know, having had Covid, Covid doesn't agree with me, and then having had the vaccine and not being able to walk afterwards, and the right arm neurological issues, if the vaccine didn’t agree with me, is the vaccine not going to agree with him because of his Long Covid, so, what do we do? You know, the vaccination situation is, like, a massive contentious issue, we’re too scared to vaccinate him, and vaccinate him full stop at the moment. We’re too scared to put anything in his body—

Lyndsey: He’s behind on—

Michelle: He’s behind on everything because we’re just literally petrified; we’re just scared of every…we just don’t know. We just don’t know what to do anymore I think, that’s pretty much where we stand with him.

It is a worry. Because I think there are so many theories about what’s causing Long Covid but they don’t really know. But one of the most worrying one is kind of like T Cell Apoptosis, so the in fact that your immune system is almost depleted from having Covid which then means whatever else you get can take hold which I think is what happened with [my daughter], I think, so the EBV [Epstein Barr Virus] then really took hold, the glandular fever. So, anything I can do to prevent that again, you know, before she goes into this soup of microbes at school.

At the moment, I haven't taken any, just because we don’t know how it will affect the cells really, we don’t know how...it could make it better, but it could make it worse. We don’t really know what to do on that aspect, and we don’t really know how to approach it, because what happened with my mum when she got it, it made her worse, but it could make me better, we don’t really know, so I’m not going to take them until I’m, kind of, nearly better because you don’t really want to take that risk yet.

Yeah, and have you heard of other people aside from your mum taking it and it being worse or better?

Yeah, some people...yeah, just from like the groups really. So I had this...like a Long Covid...like a Zoom basically with kids in it with people with Long Covid, so some people had taken it, but they’d been worse, some people had taken it and it made them better, some people had not taken it at all because of the same reasons as me, so it’s a mix really, that’s why we don’t want to take the risk because it could be a bad...it could be negative or positive if we don’t really know what’s the risk there.

I am double vaccinated. But yeah, I didn't, I noticed someone I speak to had struggled with the vaccine and I think having Long Covid and getting the vaccine, it can, it’s found that it’s those symptoms are more pronounced or after. I didn't really notice that having had it. I had it twice. But I just had a sore arm and kind of felt a bit like fluey or like, like I’d got a cold. But yeah, I know some people it can make their symptoms worse, or I know some people have got one and not getting a second one because having Long Covid it made them feel worse. So yeah, I’m not sure.

My eldest son is a different challenge because he didn't believe initially that I had Long Covid. He just didn't really understand why I would have it. And he also refuses to have the vaccine; so that’s quite a challenge. So, I’m living in the house proof of why it’s a very good idea to have a vaccine and he just won’t. So, that’s caused quite a lot of arguments. I like to try and be reasonable and to explore his thinking around it. But at the end of the day, it’s really tough when I’ve got Long Covid and he’s around everywhere. He could potentially bring it back in the house again. So, that’s been a challenge as well. That’s an ongoing challenge because he’s very clear he doesn't want to get the vaccine under no circumstances.

So, around the time when I had it, I think after me, he got it. And he does, he didn't have it very badly. He was a bit rotten for about three days. So on the one hand he’s saying, ‘I know what it’s like. I’ll be absolutely fine. And if I catch it again then it’s not going to be…that’s what it’s going to be like. I’ve got immunity,’ he’ll argue that. Although it’s over a year ago now I think a lot of it’s to do with Twitter and other social media that he’s been picking up on. Some of the things he says to me sound quite conspiracy theory. Yeah, ideas that we try and argue about around it having toxins in and people getting heart problems so, I think it’s a health anxiety at the bottom of it. He’s very sure about it. There’s no shifting him on it at all. Yeah, that’s been really hard, actually.

Has it been quite divisive in the family?

Yes, it has because our family’s a bit more complicated because [oldest son] father doesn't live with us. So, he’s got a stepfather lives with us. And me and his stepfather scientists, essentially. That’s our background. And very, very for the vaccine and his dad—although he’s a nurse—is very clear that actually ‘No, you’re okay, you can get away with it. You've already had it. I don’t know why you’re worrying about it.’ So, that has caused an extra tension to do with the family dynamic anyway that was already there, different family ideas and values, but yeah it has sort of highlighted that. And it’s led to us saying things like, ‘Well look, if you really insist you’re not going to have it, you might have to go and live with your father.’ Which is the last thing actually as a parent, like a psychologist, I won’t actually say to him. But yeah, you get to a point and think, ‘This isn’t fair.’ You know, we don’t want it back in the house if we can help it. I certainly don’t want to get it again. You know, I was fit and healthy and running and things like that before it happened, so.

My partner didn't react well because they were initially, they’re not anti-vax, but they just don’t, they’ve never got any vaccinations. They’re just not about that kind of medical stuff. I’m the complete opposite and might give me everything.

So, what you’re saying, your partner is anti-vax?

Yeah. But they’re not, they wouldn't push it on other people. It’s just they wouldn't themselves and I’m like, ‘Okay, that’s fine by me’ [laughs]. So, for a while, they’re like ‘No, it’s not Covid. This hasn’t caused it. There’s something underlying here. This can’t be what’s happening.’ And then, I think they’ve only, it took about four months for them to like be like, ‘Okay, yes, this could be Covid that’s caused this.’ I was like, ‘Oh shit’ [laughs]. But and then my mates there, they’re not as bad, they’re just more trying to, they’re just ‘I’ll get better soon’ and they don’t really go into detail with it. They just know that I’m off and not well and so it’s, yeah, it’s weird [laughs].

And what about your mum or your sister? Are they vaccinated as well?

Yeah, they’re all, all of the ones in this house are vaccinated. So, but yeah, they, I think for a good while they thought it was anxiety based, rather than, you know, medical based. I think they’ve now starting to understand it a bit more. But initially, they were very much like, ‘It’s in your head. You need to just try and move more, and you know what I mean, do stuff and you’ll feel better.’ And yeah, I think it took me crashing for them to realise that it doesn't work that way [laughs]. But the support, like they fully try, but they just don’t know enough of it to be supportive if that makes sense [laughs].

So, you think that’s what your mum thought perhaps that it was—

Yeah, initially. Because obviously that’s what the doctors were telling us. So, she just believed the doctors if that makes sense. Because that’s just, we’ve always just trusted what they’ve told us and been like, yes, ouch, especially with all like with my sister going through all the medical stuff. We just believed them. So, yeah, it took a while, but we’re getting it a bit more now and I’m trying to do more research and stuff like that.

That was like my partner because it was always just, it was something else. It wasn’t Covid. I think it took me being like, ‘Look, this is what it is. This is what we know about it.’ I sent her a bunch of research. She wasn’t, she didn't want to hear about it for a while like it was just speak about it. It’ll go away probably if it makes sense. But yeah, one day I kind of slipped and was like, ‘Look, this is everything. This is what’s happening.’ It needed that for talk to come. Now she’s the most supportive person going like getting your food as I can’t always get out to get to the shops and stuff. She’d go out of her way to do everything now. But it’s like, it took that to trigger it, if that makes sense [laughs].