Sara

Sara developed Covid symptoms in March 2020 around the same time as her husband and daughter. While her husband bounced back, Sara and her daughter didn’t recover for a long time. Sara didn’t feel listened to by health professionals and is worried about trying for another baby.

Sara developed Covid symptoms around the same time as her husband and then 6-year-old daughter, although her 4-year-old son didn’t seem to get the virus. Sara “realised something was wrong” two weeks after getting ill when she still felt really unwell. She phoned 111 but felt that it was a “horrible experience” as she had to wait for hours. Sara also phoned her GP and got a call back from the “nice doctor”, who happened to be self-isolating at the time and called her every few days to make sure she was alright.

He also sent her to A&E three times, but Sara was sent home each time and called “hysterical”. Doctors at A&E thought Sara’s concerns were because she was too “highly educated” and monitoring her health too much. She was advised to rest and “stop harassing them”. Sara has a PhD so she changed her title in her medical records to “Dr”. She felt that interactions with healthcare staff were better after that but felt that it was ridiculous that she had to change her title to be treated with respect. When her concerns were being respected, doctors thought that Sara might have a virus like glandular fever (also known as mono) or CMV because they thought Covid only affected people for a short time.

After a couple of months, Sara started to feel “more alive” but found that home schooling her children and going back to work took her energy away again. Sara worked remotely but even joining meetings online left her feeling exhausted. After the government announced that “critical activities” could continue and Sara’s work required her to go back to the office, she found the ten-minute walk to work “a huge effort”. Being this tired made Sara feel that she couldn’t “be [a] patient parent… [or] good home schooler”, not helped by being in pain all the time and she felt “a lot of guilt” about how Long Covid affected her family.

Childcare was difficult during the pandemic, Sara and her husband had to pay hundreds of pounds for a childminder when they were both expected to go into work for three days. Sara had hoped that the school would accept their children, but they were turned down because Sara and her husband weren’t classed as key workers. Sara found this really difficulty and was “falling to pieces”.

Sara’s parents lived in another country so she found it hard not having her parents there to help with childcare. Sara felt that women were disadvantaged during the pandemic because there was an expectation that they would do the domestic work, childcare, and still work in their jobs too. Sara’s found it especially hard knowing that she can’t take the medicine which helps her Long Covid if she becomes pregnant; she struggled with wanting to expand her family and not knowing if she could survive a pregnancy with Long Covid.

Sara had been referred to a Long Covid clinic but when it finally opened, she was disappointed with the service. Sara felt that there should be specialists from more than one area observing patients so they could get the care they need. However, she is starting to recover more and felt like she was “80%” back to normal after getting the right pain management medication from the GP (after a few different attempts) and an inhaler from a specialist in the Long Covid clinic (after several trial and error attempts) – which she called “a miracle”. Sara’s glad that there is more awareness of Long Covid both in public and in medicine. However, she’s “furious” with the anti-vax movement and government advice not to self-isolate if you’re under 18-years old.

Sara says that time has been a real healer for her daughter more than anything. She’s also noticed “a big, big change” with the steroid inhaler she was prescribed.

Age at interview 39

My daughter is better. I think she’s like, she’s on an inhaler like she has now proper full-time asthma that requires inhaler which will probably lifelong. So, I guess her career as a pilot is lost. Will have to go to her career as a surgeon or, I don’t know. I think she will have to be, I think she’s going to be a negotiator for a [terrorist] unit. It was, she has like, she can convince anyone to do whatever and-

Is she still able to do everything like go to school, play with friends?

Yes, yes, definitely. We had a long period she was tired by things. I think now she’s much better in there.

Do you have a sense of what helped her move out of that phase and recover?

Time more than anything, I think. The asthma medication was definitely a big, a big change because before this, she couldn't even, you know. It’s not the running, you know, running around the room like you know, playing inside a room and she’s moving or dancing or she couldn't do it. She would start choking. So, definitely since she moved to her first the steroid inhaler and now the change of the combination that is, it’s really helping. This has made a huge difference I think for her, to be able to run around and kid-like, you know.

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Sara’s decisions about whether to have another baby were affected by her worries about Long Covid symptoms and medication and how her body would cope with a pregnancy.

Age at interview 39

For example, if I decide to get pregnant again, I can’t continue with this medication. It’s not allowed. Am I going to go off it and risk myself in pain that immobilise me? Good question. I will try this one and it won’t work [laughs].

Can you tell me a bit about that, just so, the medication that you’re on you can’t take if you are pregnant?

Yeah.

And that is what’s basically managing your Long Covid symptoms at the moment?

It’s one of them. The inhaler is fine. We can live with it as we want. At least that is what the doctor said. Other one is highly not recommended, so. And it’s took time to find this one that is working, so.

And, so, if you are at a point in your life where you’re wanting to extend your family, how do you grapple with that?

This is why it hasn’t happened in the last year and a half, this was supposed to happen already, but you know, I couldn't even think about it. I was too afraid what would’ve happened if I would survive it and still be concerned will I survive it and still like a bit of a debate process. So, yeah. So, Long Covid is definitely there and still has affected my life.

I’ve interviewed people whose families—they’ve had their kids and are complete and I’m interested in the fact that you’re wanting to expand your family. You mentioned that had you not had Long Covid, you probably would’ve done that?

Yes.

Is there things that still worry you about that?

Yes. Definitely. I’m afraid what will do to my body. Can I survive it?

The pregnancy you mean?

Yeah. I don't know. I don't know. I have two kids and I’m not allowed to die. It’s the, I do not know, nobody knows answer. Nobody knows the answers. This is one of the problems. It’s, I don't know who to ask, how to ask, I am thinking to myself to do something like this and have some stress.

Does it seem like such a crazy thing to even be thinking about, right now?

In a way, yes. It’s [pause] again, we were talking long over the years and almost two years post-infection. So, we, my husband was like you’re not doing this you will kill yourself. So, it’s only in the last 2-3 months this is something we can even think about again. And how technical it’s I don't know. Just need an indication first to see if I’m surviving. I don't know. I really don’t know if it’s going to happen. If it’s happening, I hope it’s going to be okay because it’s scary. And you know increase in…all sort of personal complications. And clotting which was also all this evidence of micro-clotting in Covid. What do I do to myself? I don't know. I don't know who can—I don't know, should I be on Aspirin or cloxacillin or something? As precaution? Nobody knows. I’m also not that young any more.

Do you feel like you have people you can talk to to ask those things and bring up the subject or do you feel like it’s too taboo almost to bring it up with like your GP?

In a way. Yes, in a way it’s been like you are not supposed to—like if you go to healthcare professionals, they literally don’t know. Nobody wants to take responsibility until you [pause] and you know, it’s not like I, you know, I don’t have kids and I do have healthy kids and I’m very lucky. So, why am I even putting my head in this lion’s mouth. I don’t know why I am doing this [laughs].

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Sara paid thousands in childcare costs so that she and her husband could continue working and retain their visa.

Age at interview 39

We were, we were already planning just if she would say no, we had, we found a childminder that would just come for a few days. Actually after the first lockdown as well, when I start going back to the office we paid someone. We paid someone quite a lot of money and… We paid for like a month, or two. I don’t know. As long as there was no school, like the younger one who went back for school to school, maybe it was June, July I just don’t remember the days. But it was two days a week so the older one again, so she was 6 then. Wasn’t entitled to any school because she was year 2 and they took only year 1 and reception. So basically we had 3 days with no childcare so we basically paid from our pocket to someone to come and stay with her for a few hours so at least we could do some work. Because otherwise we would collapse. Yeah I forget about it too thank you for asking.

So yeah we paid a lot of money. A lot a lot of money. Hundreds of pound but this was the only way this could actually work. We chat with second lockdown we chat with the employer, if they could help in any way for child costs but there was. So although the managers were very sympathetic, our managers. They couldn’t get anything, any approval. Got money for home offices like, buy your desk, your screens, here’s everything. Nothing for childcare. Nothing. And I think here.

Yeah and that’s quite hard on women employees, isn’t it?

Yes. It’s one of the things that show you again, how the gap is going to grow and grow between so many female parents have lost their jobs. So many of them had to quit their jobs because someone had to stay with the kids and yes, the gap is growing.

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Sara notes that much of the guidance is quite adult-oriented and hard to translate for a child.

Age at interview 39

Something that we could have done that I’m not aware of like, you know, again, something that clinically is undetectable, because pain is clinically undetectable. Tiredness, clinically undetectable. So, it’s not like anyone will even look at you and say, “Oh yes. This is normal. This is not normal.” And you don’t have—I don't know what we could’ve managed it better if there was, you know, a guide how to manage your Long Covid child or how to manage, like also the guides are quite adult-oriented so things that are fine as adults are not that well working with kids, necessarily.

For example, all the pacing yourself and things like this. I don’t know how to translate it to a child. Or with—I know children that again will also have clinically undetectable conditions, so it’s not that you can come to school and say, “Okay, she needs adaptations.” Because, and as I say, there are no clinical parameters. You don’t know if she’s getting better or something or not getting better or something. It’s really hard to detect. So, and I wasn’t in the stage you know to be fully devoted to this and focus on it because I was focusing on some of my own recovery.

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Sara feared her UK work visa would be cancelled, and her family would have to leave the country, if she did not make progress with work projects.

Age at interview 39

And I guess you had to, even though your employer was understanding there was this sense that you needed to keep working?

Yeah, it’s not like could, understanding yes but it was understanding as long as I show process, progress. It’s, it’s yeah, it’s not like I could really stop working.

And what would’ve been the worst case scenario had you had to stop working?

It would terminate my visa.

And your whole family?

Yes. I, I’m the main dependent. I am the main migrant. So, yeah. It would’ve literally terminated my if I would get fired or my contract wouldn’t be continued because it’s a fixed term. And, yeah, I can’t even go to half 50% work because it’s not applicable to visa conditions, could probably reduce to 75 and still be in the limits. But I actually prefer to have the full hours that I am here and do less which I was allowed to do. And I don’t know, maybe you know sometimes in my head maybe I could have done less. Maybe I could have been more forgiving, less, you know. As a person, it’s also hard to not be who you were before and to give up. Anyway.

How long have you been in the UK?

Now, five years and—we got our allowance last month – very exciting. But again, when it happened three and a half years.

So, you’ve been here and you’ve made a life here and—

Yeah, I did not want to terminate because of this. It also puts you in a tricky situation because if you are on a visa and not entitled to any public funds, so you’re not entitled to any job seeking allowance to me as well in the case of being unable to work, et cetera and to make—okay, I’m going back to like to [home country]. Let’s assume we give up. So, I can’t work. I can’t do work in this condition. It’s one thing to try to continue where you already are but finding new work in this condition? You can’t.

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Sara was exhausted after a few hours at work. She felt like she wasn’t a supportive or patient parent when she went home.

Age at interview 39

I need to continue with my project and reports though, I have a project I need to progress on. So you know, we started going to the office. It’s very nearby, it’s like a ten minute walk. But the amount I could do were so little and just everything, every experiment planning is a huge effort. And everything is hard, going up the stairs, it’s hard like, I can’t even. I don’t think I ever felt so miserable, like so tired and you know, okay you do that, you go, you finish your, you do your 2, 3, 4 hour work. You come home. There is nothing left for me. You can’t be patient parent, you can’t be a good home-schooler, you can’t be, you know, you can’t be support- or supportive and have, you don’t have time for your social life. You don’t want to exhaust any more energy talking to anyone, and you’re in pain, you’re just in pain.

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