Kathryn

Kathryn developed Covid symptoms in October 2021 and was later told to look online for Long Covid support groups. Kathryn moved back in with her mum, sister, and grandma, but it was her mum who was looking after her while she was recovering. Kathryn was interviewed in May 2022.

Kathryn tested positive on the 24th of October 2021 after feeling dizzy and nauseous but found it strange that she didn’t have the “big three” symptoms at first. The first of those symptoms came two weeks later when she lost her sense of smell and taste. Kathryn felt that she couldn’t think straight and was sleeping for about 16 hours a day. She felt slightly better the week after, but her recovery “crashed” when she tried to get out of bed. Kathryn’s symptoms got worse over the first few months of having Covid, and her sleep cycle and food intolerances both changed. Her recovery crashed again when she received her vaccine.

Kathryn had gone to the hospital four times before she was told she might have Long Covid. The first two times, she was told that her symptoms were from anxiety, and on the third time the doctors found a brain lesion. It wasn’t until Kathryn went in for leg pain that she was told she might have Long Covid, and that she should look on Facebook for Long Covid support groups. Kathryn found one and identified with the experiences other people had of long Covid and realised that she probably had it too.

Even after realising she had Long Covid, Kathryn struggled to get medical support because she was too far away from her regular GP and didn’t feel as comfortable seeing another one. Kathryn also found that her workplace’s welfare support was lacking because they didn’t know about Long Covid and so they didn’t know how to help.

Kathryn feels glad that her employer offers full sick pay but is worried that she’ll lose her job soon unless she gets better. She’s attended a rehabilitation program run by her employer and found it helpful to be face-face with people in similar situations due to Covid. Kathryn feels that more medical support is needed for people with Long Covid, as it was difficult to book appointments with doctors and get referrals to Long Covid clinics.

At the start of her symptoms, Kathryn moved back into her childhood home with her mum, sister, and grandma. Her mum had started to panic because Kathryn didn’t seem herself and acted as Kathryn’s carer when she wasn’t at work or looking after Kathryn’s grandma – who has dementia. Carers used to come and look after Kathryn and her grandma while her mum was at work, but they haven’t since her grandma went into a care home. Kathryn had to share a room with her sister and feels that having Long Covid has made her lose independence and spontaneity in her life. However, Kathryn has found sitting in the garden a nice way to get fresh air and feels it’s a good place to have a lie down or stay busy. Kathryn’s advice for people in similar situations is to tell someone if you’re in a dark place and saying it out loud can really help.

Kathryn’s partner did not want the vaccine, and it took them a while to come around to the idea that Kathryn’s illness was caused by Covid.

Age at interview 22

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].

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Kathryn’s mother, a teaching assistant and cleaner, was already caring for Kathryn’s sister and grandmother when Kathryn moved back home because of her Long Covid.

Age at interview 22

I’ve only ever known her like to the last few years, it’s only been caring for grandma and then caring for my sister. So, I’m kinda used to that now. Like she’s changed a lot since we were like little kids, but because that’s really all I remember her doing is caring for them. I don’t really know if we really noticed the changes much, if that makes sense. I came to know that it’s a bit overwhelming because she’s a bit more short-temper and just tired all the time.

So, I grew up here, but we had shared bedrooms me and my sister when we were younger and then I moved out and so then she got her own. So, coming back, I had to re-double up [laughs]. So, yeah, she wasn’t too happy that I’d taken her space back. But, at the end of the day, I needed some more space.

So, you moved back into that room. Were you sharing a room again?

Yeah.

And you still are sharing a room?

Yeah [laughs].

And how has that worked out? How have you managed your days and your relationship now?

Quite a bit of, maybe a few arguments to say the least. I mean, I think my issue is I’m still with my job and I’m very everything has a place. It’s got to be neat and tidy. She’s the complete opposite of me. She throws things everywhere and it’s that that drives me insane and then she’s just sick of me laying about, doing nothing while she’s having to do everything again. Because obviously we kind of role reversing, I’m ill, she’s ill [laughs]. So yeah, it’s caused a few arguments and my mum’s in the middle stressing over everything [laughs].

…I think the biggest thing is, you’ll lose your independence. Obviously, I’ve gone from living by myself, working by myself, travelling by myself to literally needing help to like get into a shower, you know what I mean? It’s like it just you lose that, you lose like that spontaneity of just being able to do things like [laughs]. I don’t know how to word it. It’s just, yeah, just a part of you kind of like dies a bit.

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