Lily

Age at interview: 34

Brief Outline:

Lily developed Covid symptoms in January 2020 after a “mad 18 months” working in elderly care but didn’t think it was Long Covid until much later. Lily has been worried about her Long Covid disrupting her daughter’s life. Lily was interviewed in November 2021.

Lily is a 34-year-old geriatric doctor living with her husband and 4-year-old daughter. Ethnicity: White English.

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Lily first developed Covid symptoms in January 2020 and noticed when she couldn’t smell the cup of coffee her husband gave her. She had used some of her annual leave to spend more time with her then 3-year-old daughter but felt “rotten” at the end of the first day. Lily thought it was because she was tired after a “mad 18 months” of working in a hospital, but realised it was Covid when a test she took at work came back positive.

The day after noticing her symptoms, Lily struggled to get out of bed. She kept having fevers so was stuck at home for around 8 weeks. Before thinking it was Long Covid, Lily thought she might have had an infection, so she took antibiotics, but this didn’t stop the coughing and chest pain, nor the breathlessness that made it difficult to walk down the stairs.

Lily’s daughter became more anxious when she wasn’t able to sit at the table and eat meals with the family like she used to and began checking on her a lot. Lily felt that having Long Covid has also disrupted her daughter’s life, as lots of the plans they had together – like birthday parties and holidays – had to change. She felt that starting school was especially difficult for her daughter, as she found it hard to settle and she had developed a fear of taking Covid tests.

Back at work, Lily felt she had lots of support from the hospital that employed her and found the Long Covid Clinic they put on for employees helpful. However, she was a little disappointed that the physiotherapy sessions didn’t focus on people’s individual needs and found it too intensive for where she was in her recovery. Lily also joined a Facebook group for doctors with Long Covid and found it useful to have a place to ask questions about Long Covid when she didn’t want to “bother” her GP about it.

Lily trusted her GP but felt the community Long Covid Clinic she was referred to was a waste of time because it took them months to get back to her and she didn’t feel that they listened to her concerns. Lily felt sympathy for her colleagues, but doesn’t think that the Long Covid Clinics are lining up with what Long Covid is becoming and felt that a centralised approach which recognises current research would be better.

Lily’s mother and mother-in-law helped provide childcare for her daughter.

And then, yeah, so that was kind of end of February beginning of March and then I was at home for all of March and about half of April because I just couldn’t, just, well I wasn’t allowed out and to be honest there was nothing I could do anyway even when I wanted to. And I was kind of struggling on like making sure that tea was prepared and stuff like that but on I normally, have Tuesdays and Fridays off those are my days with [daughter] and bless them my mum and [husband]’s mum just stepped up and came and took her, so she was then having an extra like two days out of the house and then [husband] was having her for most of the weekend and I wasn’t really doing anything at all.

And then, yeah, so that took us up to like kind of mid-April…and then what happened after that, can’t remember, let me think, and then in about May time I finally was like this is getting ridiculous like I still can’t walk down the stairs without getting breathless, I can’t hang out the washing without getting breathless. I can’t do anything. I’m still getting loads of chest pain. I can’t walk more, like I can barely walk to the corner shop and back, this is ridiculous. And like I do elderly care, I was like most of, my patients would be lapping me right now, this is embarrassing.

Lily was a parent with Long Covid. She found it hard to make her daughter’s school understand the impact of her Long Covid on her daughter.

It’s really hard to try and advocate for us as a family with school, without, you know, because, if God forbid I had cancer or some kind, I’d been in ITU or something like that, you know, school would completely understand that there was a really poorly mum at home who, and [daughter] probably needed extra support as a result of that, and actually you get this, you have this kind of idea don’t you. Whereas because this is so new and unknown, they, and it’s not that they’ve not been supportive, it’s just that I don’t think they get quite how much disruption this has brought to our lives. And to [daughter]’s life especially and I think, you know, you don’t want to be that parent who’s like, “Look no this is really messed up her, like this she is really struggling with a really difficult year.” Because what they’re seeing is, a privileged middle class four-year-old who can already read and write and do maths, you know, who’s bright and able and has two parents at home who clearly adore her and work really hard. And a mum who takes her to and from school every day, you know, she’s got all of that. And she’s found school really tricky and it’s-, and, you know, we’ll never know, what would she have been like had I not had Long Covid and had everything just been normal. And actually, you know, we’d probably have been equally disastrous because I’d have been running round at work and it would’ve been incredibly stressful trying to manage all the drop-offs and stuff, you know, it’s just a different level of difficult.

But it’s really hard trying to advocate for her and say, “Look, I’ve been really poorly and I’m working really hard to try and make things as good as I can for her but actually, she’s in a situation where she’s having to put up with a mum who really can’t offer her very much, and that’s really hard.” and I think, because you do push yourself to do the school run because, well, partly because you want to but partly because if you don’t, your child doesn’t go to school and kind of have, that’s like a rule. Like what they see is not the reality of what life is 90% of the time. They see the top 1% where I’m just doing the school run and all of my attention is focused, is geared up on getting her to and from school. And so actually what they’re missing is the rest of the evening where it’s an absolute struggle because like, I’ve used up all my energy on doing the school run, and she’s having to deal, she has to deal with that, and I have to deal with that, and we’re both having to struggle our way through.

Lily struggles to engage in the activities she used to do with her daughter. Her husband has stepped in and her daughter’s relationship with her dad has ‘blossomed’ as a result.

We were just about managing, I was just about managing, I I’d started driving again which was useful because I literally couldn’t go anywhere or do anything if I couldn’t drive because I was like I, I’m not safe to walk which is really alien to me because we live, we’ve moved so that we’re within walking distance of town so I can walk to town with [daughter], we can walk to the park, we can do all this. And so, I couldn’t, you know, do anything beyond kind of be in the garden with her and that was just kind of sitting and watching her rather than doing anything fun…

And then we had, what happened, we had a week off together in May which I in retrospect found very, very difficult because I wasn’t getting any breaks from either of them which sounds really horrible and makes me feel dreadful but I, like just the interaction is hard work and we kind of recognised that a bit and we were trying to kind of modify activities to be stuff that [daughter] would enjoy, that I could kind of enjoy her doing and like normally I would be out swimming every day in the river or the sea, we’d have been going out to parks and like loads of walks and like that’s just the kind of people we are, so it was really challenging to try and work out what on earth we could do. And so we did a couple of bits like we, we worked out that I could go, we could go swimming as a family because I could just kind of stand in the water and she could do loads of splashing and actually that was quite a manageable experience and we could go to the beach if [husband] was coming because he could drop us off literally on the beach and then he could go and park and do all the, like all of our usual stuff that we do just not quite, not, not really happening.

Yeah he’s, yes definitely, he’s always been really hands on and really he’s like I’ve yet to meet a child who doesn’t adore my husband like they just, they’re all fascinated by him because he’s just this big mad over grown child basically who’s really fun to be around and like really silly and, you know, used to be a PGL instructor and a Canoe Instructor like that’s just like babies literally just stare at him, it’s hilarious to watch them and they’re not, they’re not quite sure but they think, they’re like ‘we just need to watch this this person.’ But like I’ve literally yet to meet a small child who doesn’t think that my husband is the most fun person in the world which is probably quite true. Except my daughter who is absolutely Mummy centric and I was like but Dad’s, Daddy’s so much more fun than I am, I am so boring like structure in the right activities come to me, but everything else your Dad’s more fun.

So yeah they, but their relationship has improved is not-, like blossomed I think is probably the right word like before she’d have been really unhappy going out with him without me and it would have been a proper like slog for us both to get her to that point but now they, like they went out yesterday afternoon, just went to the beach together and had an ice cream and had a play and now she’ll settle more for him, not so much at bedtime but she, she now will a bit which she wouldn’t before. And, and like overnight she’ll still mostly call for me but she’ll, she’ll settle with him more readily than she would have done, so yeah, so I think, I think that has improved.

Lily’s daughter really worries about her having Long Covid. She thinks there needs to be more recognition of how Long Covid can impact the whole family.

And she’s really, she’s found it very difficult to settle I think and I’m aware that quite a lot of that I think is anxiety related, I think she’s quite anxious because things are still not back to normal, you know, she’s not had normal, well she’s not had normal for goodness knows how long really. So, she, yeah so she’s now really struggling with things not being normal and Mummy not being at work and having to go to school and a whole new environment and blah, blah, blah, blah, blah, blah and it’s, you know, is still really worried about me, really unsettled by health encounters which is challenging when your mum’s a doctor [laughs]. She’s had certain, because of work she’s had so many swabs poor thing that she’s just absolutely traumatised by them. So worried about me not being well, so, for example, I had my booster jab a couple of weeks ago and I said, “Oh I’m going to go and have my booster jab while Daddy takes you swimming,” and she just cried because she was so worried about Mummy having another injection and so yes so, she’s not, she’s not doing brilliantly from that point of view.