Emotional and psychological impact of Long Covid on the family

We asked people with Long Covid and those living with people with Long Covid about the emotional impact it has had on their wider family. This section covers:

  • Impact on parents
  • Impact on children
  • Impact on partners

A key message from those we spoke to was that it impacts the whole family and not just the person with Long Covid. Lucy B is a young person with Long Covid. She says, “one of the biggest things is understanding that it impacts the whole family and not just the person who’s been unwell.”

Impact on parents

The emotional impact on parents when their child was ill with Long Covid was described as “horrendous”, “heart-breaking” and “traumatic”. Colin, whose daughter has Long Covid, explains, “when your child is suffering and you can’t alleviate it in any way, you just feel pretty hopeless.”

Parents talked about being so worried about their child, feeling “very stressed” and “hopeless” and “grieving” for the person they were before they became unwell, or for the childhood they have lost.

Lucy B has Long Covid. She says her mum feels like she’s grieving and didn’t expect to see her 32-year-old coming home and having to be cared for.

And my mum is really affected my mum. You know, she said she feels like she’s been grieving for me, even though I’m still here. I’ve also seen friends do that. Because it’s loss of the person that I was. And she didn't expect to see, you know, her 32-year-old coming home and caring for her and then seeing me in the wheelchair for the first time and now using a walking stick or the wheelchair. It’s all been a lot emotionally to process. So, it’s really impacted on my family as a whole. Yeah.

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Francesca says the whole experience with her daughter’s Long Covid has taken a huge toll on her mental health. She’s frustrated that Long Covid in children is not taken more seriously.

Anyway, the whole experience for me has taken a huge toll on my mental health and has been… I, yeah, I would use the word traumatic, and I don’t use that word lightly because I do have a diagnosis of complex post-traumatic stress disorder which… you know, which the pandemic and fears around, you know, Covid and illness have exacerbated for sure, but I would say, like, the whole experience has been traumatic because of… because of the lack of support, interest, understanding, curiosity, concern with the impacts on long-term health for any age group, but particularly, particularly in this country with children the government’s attitude to me has been so disturbing: this continual narrative of schools are safe, Covid is mild, children don’t… at first, if you remember, there was a… a narrative of children don’t spread… because children don’t get Covid, children don’t spread Covid or… or they spread it so much less than adults that we don’t need to worry about mitigations in schools that actually was the narrative, and before schools closed in January2021 for the second time, Boris Johnson saying, “Schools are safe,” you know, that that’s what has been so jarring and so disturbing to me is you have all of these people… what is it now? 117 thousand children according to official statistics, living with Long Covid, you have all these people having these experiences and we’ve got off relatively lightly compared to some, and then this narrative of we don’t need mitigations in schools anymore, we don’t need free testing, we don’t … we don’t need to concern ourselves with these people because they’re so few or they’re so… I don’t even know if it’s… they’re considered to be too few or the impact on the economy is not great enough for it to be of concern to the Government, I don’t know what it is that prevents this issue being taken seriously and…

Yeah, that’s what I have found really, really disturbing is on top of the distress of the illness and the worry around your child’s health is this con- constant sense that you're going and swimming against the tide, the tide being children are fine, it’s fine for Covid to rip through our schools, it’s not a problem, it’s mild, and it’s… it has caused me so much distress throughout these last two years, and continues to, and particularly now with all the scrapping of free testing and the complete, kind of, lifting of restrictions and the deletion of Covid from you know, media attention, yeah. So yeah, that’s… that’s been one of the worst things about it for me.

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Daisy says her Long Covid is having a profound impact on her parents’ mental health. She thinks their mental health has been impacted more than hers.

Is it your mum and dad who are caring for you?

Yeah. There’s sometimes, like, Nan and Grandad come round, but it’s predominantly them, but it’s just… it’s something that has just had a… such a profound impact on their mental health. Obviously their mental health’s been impacting more than me to be honest. Like, yes, I have to go through all this pain, but they… they… they’re always, like, stressing, and you should see my dad’s spreadsheets of just organising all the food I’ve got to eat and stuff, and it’s just them, it’s like I think they… they… they’re going to… they’ve been looking at the morphine in the cupboard enviously and just… yeah, it’s not… it’s not good for their mental health as well as mine, like, but I think I’m, sort of, holding out better, but for them it’s like their kid I guess, so.

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When relapses occurred as they did for Jake and Bella it was “really hard emotionally to deal with.”

Impact on children

Heather wasn’t sure if her children were that stressed or worried by her having Long Covid, but some other parents with Long Covid thought there had been an emotional or psychological impact on their children. Maria said that her three-year-old daughter asks every day, “are you better yet, Mummy?”

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.

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Heather’s children ‘rose to the occasion’ while she was most unwell. She’s not sure how they felt emotionally.

But the children did. I mean, they rose to the occasion, and they managed amazingly well. But whenever I got up, three weeks later, I’d never seen such a travesty of a house in my life, the mess was unbelievable [laugh]. The disorganisation – chronic, but they survived.

And were the children anxious at all, were they worried?

I don’t know, they didn’t appear that worried. my second daughter would be quite a worrier but she would hide it very well, she would never tell you how she was feeling, she just every day would come and say, “How are you today?” and I just said, “Oh, not too bad,” because I knew they were going to be scared or worried, you know? So, I don’t think they ever… I don’t think they ever felt really worried and stressed. In fact, we’ve never had that conversation about how they felt when we were both sick; I don’t know what they felt really…

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Kate is worried about how her own Long Covid is affecting her 7 year old son. He is starting to mimic some of the language she’s using, like being ‘exhausted’, and needing ‘to rest.’

Kate thinks her son has started using language that he’s picked up from her. She says that he’s not the “happiest” child he was before Covid.

Some of the other things that I’ve noticed is that I wonder if any other people have noticed something similar. My seven-year-old uses a lot of language that I think, I wonder if he’s picked it up from me. So, at the moment, he’s talking a lot about being exhausted. Feeling tired and needing to rest. I don’t think I say it all that much, but, but it’s surprising to hear a seven-year-old use those kind of words. And so, he must have picked something up from the way that he sees me every day at home, obviously taking rest and sitting on the sofa. Yeah, so that sort of, that bothers me a bit. I don’t think he’s the happiest child that he was before Covid he was quite carefree and happy. And I don’t, I feel there’s more of a weight on him now. But it could just be developmentally appropriate. But it feels like something’s shifted.

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Siblings were also affected emotionally from having a brother or sister with Long Covid. Richard and Colin said their other children were “terrified” of bringing Covid home from school or their other activities. Richard’s daughter felt angry at other kids at school who didn’t take Covid seriously. Sasha’s young children were very upset when they realised how unwell their sister was but she says that being so young the worry passes.

Impact on partners

Partners of people with Long Covid were impacted emotionally. Lindsey says “it’s really challenging” and “horrific” at times having a partner and child with Long Covid but she feels guilty for having these feelings. Helen explains that her husband, who’s a doctor, found it “very difficult” that he could not “fix me.”

Richard and his son have Long Covid. It’s been really hard on Richard’s wife and daughter. He says his wife struggles to cope when he gets “impending doom” like symptoms.

I get impending doom symptoms coming on, right it’s just, it’s just that instant, like that, it’s, it’s like a, sort of, anxiety psychosis, it’s bizarre, and then just quickly disappears, it comes and it goes, it’s instant like a switch on and off. And my wife’s, she says, “I can’t cope with being, when you’re like that,” I mean, it’s just causing, you know, she’s, she’s been really good and coping really well, but in the last few months she can’t cope when it happens.

 

Well, my 11-year-old daughter’s been brilliant, just quietly just, you know, we ask how she’s doing, oh she’s quite cool, she sits and she does, you know, she, sort of, does her own thing, and, you know, so she seems to be really good. She, she has had a couple of moments where she’s been upset and cried, “I’m worried about like [son’s] health and my health and worried about coming home with Covid and, you know, making us more poorly again,” and gets angry at school that, you know, that other kids don’t careless, you know, partying and doing stuff and don’t care about Covid, so they’ve not seen the impact of all it can do. So yeah, it’s been, it’s been really hard; hard.

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As well as causing emotional stress to the wider family, people spoke about the impact Long Covid has had on the broader lives of family members, with many not feeling able to engage in activities they used to enjoy and look forward to.

Catherine finds it especially emotionally hard when her son has a relapse. She doesn’t have a social life anymore as everything is taken up by her son’s needs.

But when he’s crashing and having… and getting worse we’ve both found that really hard emotionally to deal with. So, we got to the end of the summer and he caught a cold, which was very minor but it seemed to trigger all the symptoms. And then he had a huge crash where he’d been able to do a little bit every day to, to where he was essentially bed-bound again and not able to, to even get up or stand up or do anything. He couldn't walk, you know, he couldn't even bear to be in a bright room or have any noise so he would be lying in a, a dim and quiet room. Couldn’t watch any television even.

For [son] the impact is huge, his life has essentially just stopped. He’s just had his seventeenth birthday and he was saying that I’ve had my sixteenth birthday and I haven't done anything, which is true. He’s spent most of the time on the sofa. So, you know, that’s had and of course, his education has stopped, and his social life doesn’t happen. I don’t have a social life either because you know, the most I can manage is to fit work in and then come home so yeah [laughs]. Everything is taken up around what he needs.

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Paul has Long Covid. He says he’s trying to turn a negative situation into an opportunity to improve his quality of life. He wants to prioritise his own health and well-being and that of his wider family.

Paul says he’s trying to “build back in a more balanced way,” for the well-being of himself and his wider family.

I’m one of seven children and my brothers and sisters have sort of kept in touch sort of periodically but I don’t think, unless you’ve lived with someone who is experiencing this I don’t think, I don’t think they can fully understand it so that was, you know, we were, you know, went down to the beach and, you know, even the little toddlers were walking for a lot longer than I was and that was, you know, I just had to sit on the rock and wait for them while they carried on the walk and then they came back. And you know, it feels strange, but I’ve sort of got over that really. It’s more, it feels like for other people, I think other people are a bit, I mean my sister was just in tears with me saying how sad she was for me, and I suppose I’ve got beyond that, really [laughs].

But it’s yeah it’s when, when you define yourself by what you do for other people that’s a really, that’s a really big change and I suppose what I’m trying to do is I’m trying to see this as a gift that this is giving me an opportunity to sort of, sort of revaluate, you know, who I am and what I contribute you know, issues of identity and relate to work as well and, you know, what the role I have in the family and what you contribute to society and that’s, that’s quite scary because in a way the rugs pulled from under your feet, everything that you thought was true, you know, those things aren’t necessarily no longer the case. But it’s trying to see it as an opportunity as well yeah.

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