Emma A

Emma’s elder daughter developed leg pain (in her hips, knees, and ankles) a couple of weeks after having Covid in January 2022. Tests have not shown any cause for her pain, but Emma believes it may be due to reactive arthritis (when joints swell up following a viral disease) as her daughter has had this in the past. Emma has felt her daughter’s symptoms have been dismissed by health professionals, who said things like ‘There’s nothing wrong with her so it must be in her mind.’ Emma has found the lack of belief upsetting and unhelpful and wishes health professionals would focus more on rehabilitation. They have had one online session at a Long Covid clinic and a physiotherapy assessment – they were waiting for the report at the time of the interview. Four months on from her Covid infection, Emma’s daughter cannot walk more than a few steps and is using a wheelchair to aid mobility; she continues to have knee pain, leg weakness and fatigue. Emma was interviewed in April 2022.

In January 2022, Emma’s daughter’s school was rife with Covid cases and her daughter caught it and had mild cold/flu like symptoms, aches, and dizziness. She tested negative a couple of days later. Soon after, her daughter started suffering pain and fatigue in her legs after walking short distances and she had trouble with the stairs at school. She then developed chest pain so was taken to the children’s hospital. After waiting many hours to be seen, she became unable to stand, fainted, and threw up while having an X-Ray due to pain, but was told there was nothing wrong and was discharged. She was unable to walk out of the hospital and Emma had to find a wheelchair to get her to the taxi.

A week later her daughter was still unable to walk, and the GP said she needed to go back to the hospital. They got a referral letter from the doctors to lessen the wait. After tests came back normal and the hospital said there was nothing they could do, Emma pushed to be seen by a physiotherapist as “I don’t know how to move her I, you know, every time I touch her legs it hurts, I’m worried her muscles are wasting, I don’t know what to do.” Her daughter had to be admitted to hospital so she could be seen by a physiotherapist. They stayed in hospital for two nights—isolating in one room due to Covid restrictions—during which her daughter’s immobility became worse. When they were seen by the physiotherapist she was asked to move to the end of the bed, but she was unable to move due to the pain. The physio said, “that she was choosing not to move and there was nothing they could do for her” but that she needed to see a psychologist (Healthy Minds). They were discharged from hospital. The GP checked in a week later, and a couple of weeks after that, but her daughter was still unable to walk. Emma said, “I kept phoning the GP asking for advice, asking for physio referrals, asking, you know, what pain relief can I give.” The hospital had thought that if she gave her daughter regular pain medication, she might “break the pain barrier and start walking again.” But the GP was unhappy for her daughter to be taking ibuprofen for such long periods of time and she was weaned off it. Emma tried to increase her daughter’s mobility, but she still needed carrying, dressing, and helping to the toilet. Three weeks after being discharged from the hospital, the hospital said she needed to return as she wasn’t getting better. They saw a different doctor who suggested having an MRI, as well as a referral to a psychiatrist and the Long Covid clinic.

The following week they saw a psychiatrist. Emma recalls the visit and said “that was just awful, it was really one of the most negative experiences of my entire life, everything I said, she kind of twisted the answers.” Again, the view was “There’s nothing wrong with her so it must be in her mind.” Emma tried to convince the psychiatrist that her daughter was a normally happy, healthy, well-balanced child but as a young child her daughter had had several episodes of reactive arthritis (when joints swell up following a viral disease) and Emma thought this might be a reason for her daughter’s symptoms even though the test for inflammation came back negative. Emma said, “When I explained all of this to the psychiatrist, she put it all in quotation marks like I was making it up.” The psychiatrist insisted her daughter’s symptoms must be due to the stress of catching Covid, SAT exams, and changing school. The psychiatrist told them that they needed to “find out what she was subconsciously worried about and then she’d be able to walk again.” Emma was told “unless I refuse to accept the relationship between mind and body and accept a diagnosis [my daughter] wouldn’t get any better.” Emma was told that by using a wheelchair and giving pain relief to her daughter she was just reinforcing the idea that she could not walk. On the way out of the interview her daughter said, “Mummy, the pain is real.” Emma recalled, “…and I knew she’d heard all of that and taken it all in and I just felt so upset.”

Emma wanted to complain about the psychiatrist but didn’t want to jeopardise her treatment at the Long Covid clinic. She said, “I feel that it’s wrong to have something that’s incorrect on a medical record.” A week later they saw three clinicians from the Long Covid clinic in an online appointment. The occupational therapist thought Emma needed a hoist to help lift safely and that her daughter should see a physio. A week later her daughter was assessed by a physio at the hospital. They were still waiting for the report at the time of the interview.

Emma says “the working argument seems to be that because we’ve done some tests and the tests have all come back negative, then it must be in your head and therefore this is a psychological problem. And I don’t understand why it can’t be, we’ve done some tests, but we haven’t done one that shows us anything, we don’t know what’s causing this, let’s focus on rehabilitation, you know.”

Emma’s mum has been able to give basic advice about physio and hydrotherapy from her experience of working with disabled children and although they have only had three private hydrotherapy sessions, she feels this has made a difference to her daughter’s mobility.

Her daughter’s pain is now mainly in her knees, and she can now walk a few steps, but tires quickly and can overdo it easily. Her daughter is happy to be back at school with her friends, but she still uses a wheelchair and has a teaching assistant to help in class and push her around. The school have been supportive and have moved her year group to ground floor classrooms. Emma has been able to work flexibly from home during this time and says her colleagues have been understanding, but she hasn’t officially told work. Her daughter’s pain and mobility problems have had a real impact on the family and Emma feels guilty her other daughter isn’t getting enough attention. Emma still has hope for her daughter’s recovery; “Moving was a huge part of what she, it was her identity and now it’s awful it really is. But you have to believe she’ll get better.” She says the hardest part has been “not to be believed.”

Emma A planned for the worst but hoped for the best. Her daughter had not been able to walk for 11 weeks and she and wondered how long it will be before she can get back to playing sports.

Age at interview 42

It is really hard but it’s what we’re living through and, you know, I just want someone to tell me when it’s going to go, you know, if you break your leg, you know, you have an end point and it might be an end point with some error bars but, you know, you do have an end point, and with this, you know, when it’s really, when it’s really bad I just feel really maudlin and I want my able-bodied child back. And I think it was really tough at first and then, we’re going to Spain in three weeks on holiday to stay with friends and I always thought she’ll be walking by Spain but she isn’t going to be. But that’s okay because we can fly with the wheelchair I’ve checked it all out.

I have to worry about her overdoing it and all this extra kind of stuff and I can’t, it’s too far ahead I can’t think about it. But I wonder how long it will take, I just, how long will it take, you know, and even when she’s walking, how long will it take before she can play football, she could run further than anyone in the school, you know, how long will it be before she, every birthday we had sports parties because that’s what she wanted, last year she made us all play cricket, the year before we all played football in the rain, you know, how long will it be before she can go swimming and then come home and bounce on the trampoline and then go and play football again.

When we looked around secondary schools, we always asked ‘What girls’ sports teams do you have?’ and they’d be like ‘Oh we can tell you about the dance group.’ And we’re like, ‘We’re not interested, [my daughter] wants to play cricket, football, and rugby, what do you have?’ And, you know, it was, moving was a huge part of what she, it was her identity and now it’s awful, it really is. But you have to believe she’ll get better.

I really hope I can tell you something hopeful, I felt really hopeful on Saturday when [my daughter] was using her crutches and then she absolutely crashed and when she crashes it, it’s the worst, I think that’s the hardest thing.

Yeah it sort of seems like you’re making some improvement or recovering slightly just, you know, you get sent right back to the beginning again.

You plan for the worst and hope for the best, I think the thing that worries me most is that, and I’ve not told anybody about this, is that we will get through this and then what happens when she’s 13 and she catches a virus and this all happens again. That’s the thing I think that frightens me most. But that’s good because it must show that I am working on the assumption she’s going to get better. So, there you go, subconsciously by worrying about this, I know in my head she’s getting better, there we go.

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Emma A was eventually offered occupational therapy and physiotherapist support for her daughter but was concerned that the psychiatrist did not believe Bella’s symptoms were physical.

Age at interview 42

So that was two Tuesdays ago, then we went to the Long Covid clinic and we had three people on Zoom and it was a lot more relaxed because we were at home and Bella was colouring and we had an occupational therapist who was like you’re carrying Bella around everywhere that sounds quite unsafe and I thought well I’ve been doing it for nine weeks now, you know, I know it’s not safe [laughs]. Tell me about it. And she said that she thought we needed a hoist to help me get her in and out of the bath and all this kind of stuff that I needed weeks ago and then they said we think you need to see a physio.

And then there was a psychiatrist who, I said, she asked me what do you think’s wrong with Bella and I said I think there’s pain in her knees and I think it really hurts and I think when she’s achy it hurts more and I also think she’s nervous about putting weight on her knees because I think she’s worried it’s going to hurt and she said, “Can you tell me more about the fear of moving?” And I really, I felt really nervous about that because I’d had that awful conversation the week before and whilst I appreciate mind and body are connected, there’s something hurting her in her knees.

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Emma A is worried about her husband getting Covid and her daughter catching it again. But it won’t stop her daughter going to school or stop them from certain doing things as a family.

Age at interview 42

And now are you worried about Covid coming into the house again with Bella being where she is?

I think so, at first I wasn’t, at first I thought we’ve all had it apart from my husband because he kept separate from us when we had Covid, slept in a different room and kept out of our way. Because he suffers from, I don’t know, fibromyalgia and stuff so the last, I mean so I’m really worried about him catching Covid and having a reaction similar to [my daughter]s. I’m worried about flying to Spain, I’m worried that he’s going to catch the virus on the plane and become ill in Spain, I’m worried now that, oh you poor thing, I’m worried about…yeah because for me and [younger daughter] it’s been four weeks, for [my daughter] it’s been more than six weeks so I think she can probably catch Covid again now. But I, it won’t stop us sending her to school and it won’t stop us from doing certain things.

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Emma A does not feel ready to hear about young people who had remained unwell for many months – she remains hopeful that her daughter will get better soon.

Age at interview 42

There’s a kid who’s in Lincolnshire or something, he’s been in a newspaper reports a couple of times and when I read that account, it was a very similar thing I’d heard to [my daughter]. He couldn’t keep up with the dog walks then he started coming down the stairs on his bottom but when I read that he’s still in a wheelchair…and I cannot believe that’s the future for [my daughter] a year from now, I cannot, I cannot, and so I’m nervous to read more and find out more in case. I can’t, I can’t believe that.

I think that’s why I don’t interact with Long Covid Kids so much because I think, I still think this is going to go away. I don’t think it’s going to go away tomorrow but I don’t know, I don’t think I’m ready to hang out with parents whose children haven’t got better for a, after a year, just yet. Some good news stories about Covid would be good [laughs]. I don’t…you can get that out, some stories where people have been through stuff and they’ve got better because there’s lots of stories where people haven’t and it would be really good to see the other side. I was thinking of e-mailing Long Covid Kids and asking them for some hopeful stories to be posted on their Facebook group instead of just worst-case ones [laughs]. Maybe they are all worst-case, maybe there aren’t any good news, don’t know.

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Emma A said it felt really awful not to be believed. However, she describes another doctor who was “a lot more compassionate.”

Age at interview 42

And so, a week after that we were referred to the Long Covid clinic. Ah no, so a week after that the psychiatrist appointment came through and that was just awful. It was really one of the most negative experiences of my entire life, everything I said she kind of twisted the answers. She asked really loaded questions and so, for example, one of the things she asked me was are there any stresses for [my daughter] and I said no, I really don’t think so, I think my child is happy and joyful, you know. She enjoys playing outside, during lockdown we spent a lot of time climbing trees. I really value nature and general wellbeing. Then I spoke to another doctor, proper, I’m stereotyping now, I spoke to another doctor who I presumed was a mother because she was a lot more compassionate and she asked me how I was and how I was managing and she said she knew it was really tough and that the last thing I wanted to hear was that this was going to take time but probably time was the only thing that was going to do.

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Emma A’s colleagues supported her to work evenings from home so she could care for her daughter during the day.

Age at interview 42

My colleagues have been really kind, I work from home, I work evenings and so I feel sad, I mean, I’ve predominantly been in research so I didn’t really worry too much about not being in the department because no-one required me to, no-one needed my face to be there but now that I’m a lecturer and I have tutees and supervision students who might like to see me, and I feel bad that I’m not there but the only way I can make all of this work is by working from home.

But close colleagues, I’ve worked there for a long time, you know, and I’ve always pitched in and helped others out when they’ve needed the load to be shared and I think I have a good reputation, I think everybody’s being supportive. We haven’t told HR because they might make life really complicated for me. At the moment nobody knows really officially what’s, where I am.

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When getting her children ready for school, Emma A says she felt guilty for giving all her attention to her child with Long Covid– “I just came home and cried and cried and cried.”

Age at interview 42

Yeah, yes so [younger daughter]’s eight she’s at the same school with [my daughter] and there was an incident two or three weeks ago when I’d been so obsessed about getting [my daughter] into school in a wheelchair and that I’d completely forgotten to say goodbye to her [laughs] and so I just came home and cried and cried and cried oh honestly.

And then I phoned school and checked that she’d got in and that she hadn’t like wandered off with a stranger and that I’d sent a message to her teacher on dojo saying I’m so sorry I am possibly the worst mother in the world I did not say goodbye to [younger daughter] this morning and then I texted [friend] who was also with [my daughter]and said can you go and put your head into [younger daughter]’s classroom and see, and try and apologise to her, so yes I am taking care of my other child but I just feel tremendously guilty.

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Emma A has to juggle helping her parents, caring for her child with Long Covid, and work.

Age at interview 42

My mum lives about an hour and a half away and my dad’s got prostate cancer and he’s currently going through 20 days of radiotherapy. So, today’s day 11 of his radiotherapy and my Great Uncle has just died and so I need to take my mum to a funeral because my dad can’t miss it and, do you know, I actually have a job as well [laughs]. So, it’s, we are, you know, my mum doesn’t know who to worry about.

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Emma’s daughter Bella has missed her friends at school and is keen to get back to see them.

Age at interview 42

She missed her friends and we tried to get a couple of them round and that was good but also it really wore her out, you know, and at the time we didn’t, I didn’t know how to manage her, you know, I saw her playing with her friend and so I let her carry on playing and then she didn’t move for a week after, you know, because she’d over done it and I didn’t know.

So my main motivation to get her back to school was to see her friends, I’m not worried about her education at all, you know, she’ll catch up. So now she’s back in school and she sees her friends and I think that’s good, she says that they forget about her in the playground and I think they wander off and realise [laughs] that she isn’t going to follow them and I think that’s probably why she wants mobility scooter so she can run after them and, and. Because Bella’s a real leader, you know, everybody loves to play with Bella. you know, there’s a kid everybody wants to play with, it’s Bella, because she’s so much fun.

So how is she dealing with it? So, I think it’s been really tough. We try and get friends round, we try and, she’s seen her friends at school.

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Emma A is frustrated that because investigative tests tend to come back normal, the assumption is “it must be in your head”.

Age at interview 42

And so they, they say it can’t be arthritis and I said can it not be arthritis just like really stuck in her knees that you can’t pick up on something and, you know, they’re just like you’re refusing to accept the connection between mind and body, and I was okay I don’t think that’s right I just don’t think there is a test that has picked up whatever it is that’s causing her pain and that could be right because we have no proof that it’s wrong, just as we have no, you know, the fundamental thing, the working argument seems to be that because we’ve done some tests and the tests have all come back negative then it must be in your head and therefore this is a psychological problem. And I don’t understand why it can’t be, we’ve done some tests but we haven’t done one that shows us anything, we don’t know what’s causing this, let’s focus on rehabilitation, you know, it doesn’t have to be, anyway.

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Emma A tries to use laughter to cheer her daughter up. She says having a child with Long Covid can feel like “having a newborn baby again.”

Age at interview 42

We saw some bigger girls just after we left the house and I noticed that she kind of put her hood straight up [laughs]. And I said, “well done [my daughter], if you put your hood up nobody can see you!” [laughs]. And so, we did tease her, and we try and laugh and, you know, we try and make jokes out of the whole thing, a little bit of black humour but, you know, it’s kind and it’s supportive and she does laugh. She, she laughs a lot but recently she’s, you know, she’s saying, you know, why has this happened to me mummy, you know.

Oh yesterday she said that she really wanted to bounce on the trampoline and she can’t, she really misses being able to jump and so I put her on the trampoline and me and her sister bounced her up and down and I thought I was going to wear myself, but it’s okay I didn’t [laughs] and you know, it’s just, but it is just that, you know, before this happened I would have just sent them both out to the trampoline and I would have got on with dinner and it’s just everything, it really is like having a newborn baby again. You have to be there a 100% of the time, you have to be positive a 100% of the time.

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