Family experiences of Long Covid

Sources of information and support for Long Covid

In this section we cover how parents and young people found information about Long Covid, what helped, and where there appeared to be gaps in support.

We include:

  • Online support groups
  • Family, friends, neighbours and colleagues
  • Information, research, and official sources
  • Information overload and anxiety
  • Gaps in information and support

Online support groups

Online support groups and Facebook sites set up by people who had Long Covid were described as a real lifeline by many of the parents we talked to. Particularly for those who were unwell before Long Covid was widely recognised, it was reassuring to learn that they were not alone.

 

Michelle recognised that what they had was Long Covid when they searched online.

Michelle recognised that what they had was Long Covid when they searched online.

Age at interview: 50
Sex: Female
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I was, like, ‘I don’t know, kind of, what is wrong, but I know something is, like, seriously wrong.’ And I’d started Googling to see if anybody else was suffering from the same thing and we were, kind of like, April time and people had started putting out, on the social media, about Long Covid, long-haul Covid and I just thought ‘Yeah, that is absolutely what I’ve got.’ I’ve got, like, the fatigue, I could barely stay awake, I could...the pain was unbelievable, so I just knew something was bad.

It would...there’s elements of it that were really helpful, and it was just nice that other people with Covid, that had had Covid and had got Long Covid, were there and you could see them on the Teams screen, and that I didn’t feel like I was the only person in the world with it anymore. Because having Long Covid, you are really isolated, I think.

You know, whilst you know that there’s another 46,000 people in the Facebook group...like, in [local town]...because it’s obviously just a [local town] based thing, there was like, 10 people in my group and they were there on the screen in front of me, and yeah, it was just nice to see that I wasn’t alone anymore and that there was some older than me, I was probably the youngest of our group, and there was days when I was sick and I was ill, because my immune system wasn’t great. Oh, they did this problem-solving thing, so you’d bring a...it wasn’t...yeah, it tended to be me because I was the most outspoken probably, but we’d bring a problem and then everybody would pitch in to answer the problem.

Hearing about other people’s experiences, the ‘weird’ symptoms and sharing ideas provided practical and emotional support. It also helped to reassure Beth and others that they were ‘not crazy.’

 

Claire set up a flourishing online support group and campaigns for rehabilitation, research, and recognition for Long Covid.

Claire set up a flourishing online support group and campaigns for rehabilitation, research, and recognition for Long Covid.

Age at interview: 49
Sex: Female
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I’d never set up a Facebook group before, I’m not very techy and I was really, I was just bedridden the whole time, and so I pressed a few buttons and pressed, made this Facebook group, and it spread through word of mouth, and has now got nearly 46,000 members in a hundred countries. So and soon after I took to Twitter, which I’d never been really active on before, but I’d already been, I’d started being active on it even before I started the group, to say, I was trying to kind of tag, I don’t even know how to use Twitter either, I just, I’m a novice at all this stuff really, but I was trying to tag influential people saying—because at the time the government was only talking about cough and fever as symptoms. And I actually didn’t have either of those, and nor did I have the loss of taste and smell which was added later, but I, myself, and my children didn’t have any of those symptoms. So, I was trying to flag people that we urgently [need] to update the symptoms list because people are inadvertently spreading this thing, not knowing that diarrhoea or their joint pain, or their sore throat or their headache, you know, they’ll be wandering the aisles of Asda spreading this around. But nobody was listening so when I then set up the Facebook Group and became very active, because we were invisible as a community, nobody, everyone was talking about deaths and hospitalisations, well they still do largely. Frankly, Long Covid is overlooked too much. And so yeah, very, very actively campaigning for, we came up with the three-word slogan of rehab, research, recognition is what we wanted, and just really just plugged away and, you know, all that stuff.

While parents of children with Long Covid were relieved to share ideas with anyone, some really appreciated the opportunity for a more focussed connection with those with similar aged children.

 

Emma B joined a support group for parents and had linked up her daughter with another for children of similar age.

Emma B joined a support group for parents and had linked up her daughter with another for children of similar age.

Age at interview: 39
Sex: Female
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So they’re evolving and they’re setting up new things constantly but just looking, so you can search other people’s symptoms, similar experiences on the support group, you can talk to other parents so you know you’re not alone, some people just have a bit of a rant which is fine and then there’s the separate one which is the Long Covid Kids Facebook group which gives like any publications and the post-publications and things like that and then on the website you’ve got, you can like log in and register and they’ve got support packs and information, links and they’ve also set up like a chat group for the children now so the children can go into a chat box, so they can find other children to talk to and there’s also a certain number of Long Covid Kids connection sessions the children can join Zooms and chat with other children in similar situations. Luckily one of the mums just set up said does anybody want to meet, anyone want to talk I’ve got an 11-year-old and there’s five of us and we’ve all got children who are 11 so we’ve got us own WhatsApp group for Long Covid Kids and it’s just really good to have that support around you.

It really helps that she met up with her a girl who’s the same age just online, but I spoke to her mum, and we had a Zoom and they…we met the girls up just who I met through Long Covid Kids, so she’s got someone in a similar situation and that’s really helped her I think.

Some of the young people we talked to had joined online support groups, often encouraged by their parents.

 

Rosie joined a group with her dad and appreciated the connections with others who ‘properly understand.’

Rosie joined a group with her dad and appreciated the connections with others who ‘properly understand.’

Age at interview: 16
Sex: Female
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Yeah I did, there was a group on Facebook that my dad joined and we did meetings on Mondays for six weeks, and we talked about strategies of that have helped for us, and so then other people could try them and just sometimes just chatting to each other about what we’ve been going through, so we can, sort of, connect with people who know exactly how it feels.

Yeah, did you find that to be helpful?

Yeah, I did.

Yeah, is that because of being able, you know, to relate really closely to their experiences?

Yeah, it was nice to talk to people who, like, properly understood, and even the occupational therapists who ran the group, they had chronic fatigue, or Long Covid, so even they, as well, knew, like, how it was and what, like, you had to deal with each day.

The online support groups were not used by all the young people. For example, Deidre said that her daughter was so far not interested in joining a group, and Evie, who is 15 years old, said that her mum found the online sites more helpful than she did.

Written resources were also available through some of these groups. Emma B found the written guides produced by Long Covid Kids useful and was pleased to be able to share them with others, including schools. Sasha told us she had contacted specialist doctors she had found through a Facebook Long Covid support group.

Family, friends, neighbours and colleagues

Families who are trying to cope with Long Covid often really appreciated the care and support received from other family members, including children and young people who remained relatively well. We also heard about friends and neighbours who had pitched in to help in a variety of ways, including by taking other children out for the day or involving them in treats. Parents who were managing their own, or a child’s, Long Covid were often very worried about the effect on the rest of the family.

 

Teamwork in a loving and supportive family is helping Sharifa’s family to cope.

Teamwork in a loving and supportive family is helping Sharifa’s family to cope.

Age at interview: 48
Sex: Female
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Exactly, yeah, it’s how you get through things, that’s right, obviously otherwise you'll...you'd be like just there ill, you know, you need to have that support to make you get better quickly, as I said before even now, and then they've still to the symptom, but then everyone’s got each other’s back, yeah, if one’s down, the other one say, ‘Yeah, come on here, yeah, you'll be fine, don't worry.’ And that can be a bit of more confidence to you, offer you at that time, that helps you a lot to get through that.

Yeah, that teamwork.

Teamwork is very important, yeah. To be at each other’s back and that teamwork, because as I said before, the long symptoms you've got that you feel it more, you're going to feel more down psychologically as well and physically as well. But I think it’s very important to get that support and feel yourself that confidence back where you can make your body, and your body heals more quickly then that way as well, that’s what I experienced and that’s what we sort of went through. That’s what we felt, yeah.

Claire explained that her friends and neighbours had been really helpful and that she ‘couldn’t have got through it’ without them. Her (then) 15-year-old son and her other two children have helped to keep the household going, in between their own bouts of illness and relapse.

 

Deidre’s friends and family have been an enormous help, including taking her other children for days out.

Deidre’s friends and family have been an enormous help, including taking her other children for days out.

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My family have been very supportive for [older daughter] to be fair, and [husband]’s side of the family have been amazing as well. So, and they’ve always offered to help out with anything. They’ve all been really good and my friends have been amazing as well. I don’t like have masses of friends. I have very, very good friends who, you know, you can count on your, on one hand. And they’ve just been, yeah, they’ve been amazing at helping out for anything or taking the other children to activities perhaps if [older daughter] not feeling up to it and then they’ll take the other girls out and stuff, so. And obviously, I’ve got older children as well and two of those can drive. They’ve been, you know, brilliant as well. We…sometimes my 19-year-old daughter will kind of just take [older daughter] out somewhere so to do something special. Things like that which is quite nice.

 

Golda appreciated a friend who still dropped off soup to her 11 months later.

Golda appreciated a friend who still dropped off soup to her 11 months later.

Age at interview: 53
Sex: Female
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I mean, I’m 11 months on and still get texts from friends, 11 months on, “Just checking in how are you doing?” I still get a friend came by on Sunday who dropped off some stuff, just, you know, “I made you some soup.” 11 months in, like nobody’s given up even though I might, they haven’t given up and I’m cognisant of that fact that I’m very blessed with that because a lot of people don’t have that and, you know, [sighs]. That’s definitely something that’s helped me through because I know that on these groups that I’m on sometimes people they post and they’re like, “I’m at the end, I can’t anymore” and they have no one, and we are their support and that point I might write something like, “Don’t give up.” You know, even though this is a long haul but keep going because very, there will be a light there. “Imagine the light, just even if you don’t see it, imagine it.” That’s hard itself, that takes a lot of… [sighs]. So that was six weeks. So that was the first time that they queried Long Covid like they obviously realised that this wasn’t, I wasn’t getting over Covid so fast.

For more about this, see ‘Changes to Care Roles.’

Information, research and official sources

The existence of Long Covid was initially recognised when people who were still unwell weeks after infection with Covid-19 connected with each other online. By 2021, it was a much more widely recognised problem, with official information and media articles available and Long Covid research underway.

Some of the people we talked to, including Eleanor, got information from official sources, media, and people’s experiences – and said that they found it reassuring and more believable when the information from different sources overlapped.

 

Emma B said she looked at everything she could find about Long Covid, trying to work out what would be helpful to her daughter.

Emma B said she looked at everything she could find about Long Covid, trying to work out what would be helpful to her daughter.

Age at interview: 39
Sex: Female
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Everything [laughs]. I read, I just read absolutely everything that there is out there, obviously proper medical, trials, clinical trials, Reuters, World Health, anything I can find and any articles, people sharing on Long Covid support group read all those anything I can find online, I just read and read and read them all and just try and find answers really. anything I can do, you know, just like reading supplements that have helped people.

Yeah 100% without that I think I could have probably, you know, my mental health would have really suffered, there’s…thank goodness for the Long Covid Kids and they’ve brought out a fantastic over 100-page guide as well and you can share with schools and settings as well so that’s really, definitely helpful.

 

Daisy said that her parents were online every day looking for information about Long Covid.

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Daisy said that her parents were online every day looking for information about Long Covid.

Age at interview: 14
Sex: Female
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My parents, every day, are on the internet, researching...and I know you're not...Google isn’t a very viable resource, but when you’ve got doctors that say, “It could be, but we don’t know,” that’s what we have to do, and we would…and it even went down to the point where they had to find their own private, like, Yorktest [allergy test], and then we wouldn't have ever thought about the allergies, and my mum’s friend is also a paediatric dietician, and she’s got other clients, but we’ve had to be asking her, and she works in [city] and it’s nowhere round here, but we’ve still asked her because there are so many failings in this the system around here. We just asked numerous people, but they basically we just get told the answer. Even when we were on a 111 call the other day, it was like, “Oh yes, you should have a health plan, you should be...have a set plan.” Because of all this stuff that’s promised on the NHS website, there’s a set plan for what should happen with Covid.

 

Diane used the NHS website and looked at academic papers to find information about ongoing loss of taste and smell.

Diane used the NHS website and looked at academic papers to find information about ongoing loss of taste and smell.

Age at interview: 47
Sex: Female
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Yeah, just checking Google search at the NHS website you know, there’s studies going on and, you know, some academic papers as well. But it’s just one of those things I didn’t get too embroiled in it in that, you know, it was like for some people it comes back, some people it doesn’t and it takes longer for some and it doesn’t, and I think that’s the main take home message, I didn’t get too into the nitty gritty, it was just ‘Is this normal?’

Although people often told us that they ‘obviously’ looked online for information, several parents said that they were very careful about the sources of information they used. Danie was very cautious about how she used the internet. She saw the information from the hospital as ‘comprehensive’ and said that if she needed to know more she would ask, or ‘Google’ the question. Michelle asked advice from her GP about any information she found online about Long Covid.

Sasha, Lachlan, and Emma A looked for information in research journals that they could access online, although Emma A was careful (‘I daren’t tell!’) about raising alternative views when talking to doctors about her child’s Long Covid.

 

Michael, a former medical student, had benefitted from meeting other people with Long Covid when he took part in a research study and thinks social media groups can be helpful.

Michael, a former medical student, had benefitted from meeting other people with Long Covid when he took part in a research study and thinks social media groups can be helpful.

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Yeah. So, I’ve kept an ear to the ground and done a bit of research on things that, ideas that are coming up. I’ve been to Germany. I was part of a study there looking into kind of micro clots, diagnostic, hyperactivated platelets as well and possible treatments. And that was, you know, that was interesting because it was kind of meeting other people with Long Covid for the first time. And that, that was really kind of nice in a way. You know, it’s kind of like…and I think everyone had this almost disbelief they were speaking to somebody who, who understands what it’s like to not be able to sit in a chair for too long and all the things, all the awful stuff that comes with Long Covid. And they kind of believe you automatically. And I think that’s, that was really nice. It was also really interesting to learn about that.

Online, obviously, was really helpful. So, if things like PoTS UK website, that was, you know, that was useful before I’d spoken to anyone about PoTS. And I think social media. I don’t really do much social media, generally. But I think that a lot of people have found things like Facebook groups were really helpful. Because other people kind of sharing ideas about what’s helped them. I’m kind of been trying things and keeping people feeling like they’re not alone. I think that that’s probably supported people, and Twitter and all these things. I think that’s supported people an awful lot, yeah.

Information overload and anxiety

It is widely recognised that reading about health issues online can have a downside, for example if people become too drawn into looking at content that makes them anxious, which Maryam and Colin experienced. Rajash warned that online information can increase hypochondria. Hearing about others who remained very unwell or had developed new ongoing health problems many months later made Golda, Zubair, and Emma A feel sad and disheartened.

 

Colin found that looking at the internet increased his worries about his child’s Long Covid.

Colin found that looking at the internet increased his worries about his child’s Long Covid.

Age at interview: 47
Sex: Male
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So that’s, I suppose that’s one of the big worries, you know, because you read about myocarditis and pericarditis and various things that I don’t know anything about, you know, I’m an economist, I’m not a health specialist [laughs]. And then I started thinking then about this MRI, I wonder what that is, and I made the mistake of looking at, you know, brain changes in kids with Covid and I Googled, you know, is it spongiosis or something? And I shouldn’t have gone there because it’s just like—because then once your brain has like taken you to worst possible place, which it probably isn’t but, you know? So, you know, the internet is a wonderful thing but, in some cases, it would be better if it was just turned off, you know, and so I suppose, yeah, that’s not a route I would recommend for anyone, you know, cross the bridges when you come to them rather than building bridges you don’t necessarily need to cross I guess.

 

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.

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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
Sex: Female
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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.

We talked to some people who said that they were themselves just too tired, experiencing brain fog which made it difficult to concentrate, or were too busy to search for support or information. In some communities, digital inclusion was more of a challenge.

 

Zubair reminded us that not everyone has internet access, especially in his community.

Zubair reminded us that not everyone has internet access, especially in his community.

Age at interview: 47
Sex: Male
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So they pass on you know information to us for us to pass it to the community, and anything I find about Long Covid, or anything to do with Covid, I actually...I used to actually share them on Twitter and Facebook and Instagram, but because I’ve been unwell I’ve stopped doing it, but mostly if it comes in WhatsApp, I just pass it to the people within the community who I know, even you know like I said, if I read anything about the Long Covid, I’ll pass it on. But a lot of people don’t understand because...especially older people, they’ll say to you, “What’s that?” and then you have to explain. It’s like my mum and dad, I’ve explained to them, they will not understand it. Some people don’t have, for example, because of digital...you know, inclusion. It’s one problem in our [inaudible] community, you know they don’t have access, or they don’t know how to use the phones or whatnot, or if they can’t read or write, so that information doesn't get to them, unless if somebody tells them verbally, but even telling them verbally, they will not understand. You know so, it’s for…mostly for older people because of the situation they’re in. But I think the Long Covid, in the media has been quite...out there quite a lot. You know so it’s well known to people and well known to medical professional, but how well it’s understood, obviously it’s...depends on the people and the community.

 

Hazeem doesn’t have the skills to search for information himself and prefers to hear information verbally.

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Hazeem doesn’t have the skills to search for information himself and prefers to hear information verbally.

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I’m bad in researching and reading, I’m bad, [laughs]. So yeah, if someone tells me I would listen; reading is not my thing, really no, that’s...maybe that’s why I don’t know. Sometimes there are words as well, but let’s say if there is some letter from the doctor or somebody which I don’t completely understand, I would probably...if, so there was something important, I’d probably go and Google it and translate the words I don’t understand to make sense. Like you know, but mostly there is...because ‘nose,’ for ‘nose,’ I didn’t...like I say, I was like, ‘Okay, maybe we’ll go or maybe we won’t go, it’s fine,’ so yeah, so I didn’t really search on it.

Comparing notes with others could be helpful, but comparisons were not always reassuring or supportive. Lucy explained that she felt less entitled to care having heard what others were going through.

 

When Lucy A hears about other people who are doing worse with their Long Covid, it sometimes makes her feel that she does not deserve the care she is getting.

When Lucy A hears about other people who are doing worse with their Long Covid, it sometimes makes her feel that she does not deserve the care she is getting.

Age at interview: 14
Sex: Female
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And do you know other people then of a similar age to you with Long Covid?

No. No one [laughs]. There is like a way you can communicate with them. It’s a Long Covid group. My mum is with the parent one. But there’s a kids’ one where they can chat. But I constantly find myself comparing my problems to other peoples’. Basically, where I wonder if I got that from my paediatrician, where like if I heard about someone else’s problem, I’d be like, ‘Oh my, they’ve got it so much tougher than me. I don’t really deserve to have any help. They should have it.’ And stuff like that. I’m not saying they shouldn’t have—just you know. Like, yeah, I would find myself comparing my problems to theirs and feeling like you know, I don’t have any right to complain or anything.

Was it ever helpful to you to compare yourself with other people or have you always felt that it’s made you feel like that?

It’s always kind of, it’s always made me feel really bad about it. So, I avoid—like things like that because it’s not good for mental health and stuff. But there is Long Covid groups available for kids if they do want to talk to other people in the same situation of them, but, for me, personally, no.

 

Helen initially used online forums which increased her anxiety; on the ‘really good advice’ of her cognitive behavioural therapy counsellor, she decided to stop using them.

Helen initially used online forums which increased her anxiety; on the ‘really good advice’ of her cognitive behavioural therapy counsellor, she decided to stop using them.

Age at interview: 38
Sex: Female
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So, I was spending an awful lot of time looking at forums, looking ‘What is wrong with me? Why is this happening?’ And the problem with the forums is that you get an awful lot of people who don’t really know what they’re talking about but are very confident that they do know what they’re talking about in amongst the people who are just sharing their experiences and everything. And I was kind of finding all these kind of like leads about, ‘Oh it could be this or it could be that…’ which as a researcher was actually quite stressful because I was thinking I understand this a little bit and maybe I don’t want to read this. Anyway I had CBT, and what was really helpful about that was that it encouraged me not to do that, not to go on the forums and that was fantastic, that was really good advice and I’m so glad that I didn’t, that I stopped going on those because yes, I didn’t maybe see some of the leads about what could be wrong with me but it made no difference at all to how I was being treated and then the other thing which is relevant to this conversation that we’re having is that we focused down on my family life.

Gaps in information and support

Information was not always available or easy to find. Parents pointed out that much of the guidance on Long Covid was written about adults, not children and young people.

 

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

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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
Sex: Female
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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.

The lack of understanding about how Long Covid could affect children had consequences for some parents, like Francesca, whose work colleagues did not really understand. She noted the contrast between online support groups and ‘the rest of the world.’ Deidre said that it would be great to see some good news stories about Long Covid recovery.

 

Francesca felt that her work colleagues did not want to face the reality of Long Covid in young people.

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Francesca felt that her work colleagues did not want to face the reality of Long Covid in young people.

Age at interview: 47
Sex: Female
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So I now work in a new job and with new colleagues, and when I say that I’m still suffering with...the effects of Covid seven weeks on, people’s faces kind of are like...they don’t want to hear that Covid affects people in this way, they want to think “It’s just like a cold now, and it’s fine if you catch it, and everyone will be fine,” and when you challenge that and say, “Actually, my daughter’s developed a heart condition and can’t taste her food nine months later,” they’re like, “Ohh…”

It’s very jarring for me going between...you know, for example, an online community like Long Covid Kids where there’s loads of support, loads of understanding, everybody’s trying to help each other and share information and make things better, to the world of my daughter’s school or the world of my new employer where, yeah, there’s not really even a willingness to acknowledge what’s going on. And in fact, there’s an active suppression of information I would say [laughs].

Finally, some of the people we talked to mentioned the gap in information and support for the partners and siblings of people with Long Covid. Although people who are relatively healthy might be reluctant to claim support for themselves, some wondered whether a more family- or household-focussed approach might be a better way to handle the effects of Long Covid.

 

Lindsey, whose partner and child both have Long Covid, wonders if a support group for family members is needed.

Lindsey, whose partner and child both have Long Covid, wonders if a support group for family members is needed.

Age at interview: 41
Sex: Female
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For someone as a partner of someone who has got Long Covid, or as a parent of a child who’s got Long Covid, there’s nothing, there’s nothing for them to help them cope with what they’re going through like and I feel, I often feel guilty because, you know, sometimes I’m tired, like I’m really exhausted but I don’t feel like I can say that or complain about that based on what they’re going through. So yeah it has been really challenging like, you know, she, Michelle’s obviously in lots of Facebook groups and Long Covid groups and things like that and she often says ‘Oh,’ you know, ‘This person just said that their partner’s walked out on them after a year of dealing with this’ and stuff like that and, you know, that’s the reality of this, that it is that hard for that person and I feel that sometimes. I would never do that, I still, you know, that’s not part of my remit. I’m here to support my family and my wife and get through this but there are times where it is horrific, it really is horrific. And the support network for me is, it just doesn’t exist, there’s just no acknowledgment of that at all really and that’s quite challenging at times.

And that’s where I think that we fall way down the list, I think we fall further down the list because, because we’re not suffering with medical problems because I’m not badgering my doctor every five minutes because I can’t walk or I’ve got a migraine or I’ve got a cough I can’t shift, I’m not, I’m not a priority. I’m not a problem, I’m just dealing with it. I’m just, you know, in the background in that regard. But yeah, the other people, the Covid is, the Long Covid, you know, often Michelle will go look this person, another person has committed suicide because of Long Covid, like a 27-year-old person that should, and I just think people are suffering and not a lot is happening and, you know, that’s awful.

I can’t think of anything I have, one thing I have said to Michelle several times, so she’s part of all of these Long Covid Facebook groups and I said to her, I said I wonder if there’s a group outside of that for people like me. So, people, and there isn’t, I keep saying oh maybe I should, maybe I should just start one.

 

Vonnie reflects on how hard this has been for partners of those with Long Covid.

Vonnie reflects on how hard this has been for partners of those with Long Covid.

Age at interview: 59
Sex: Female
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I was thinking about this actually relationship. Because remember, Covid comes at any age. Can you imagine the scenario of, well, as a young couple or a couple just, you know, met, starting to build life and one comes down with Covid and they’re seriously impacted, how that crumbles with the partner. Where’s the support for them? Can you imagine a situation where there’s a single parent? No? We need some sort of support here. Yes, we’ve got fantastic support with the online supports, but somewhere along the line, you’re going to have to have something, some counselling in place, and counsellors shouldn’t be under the terms of mental illness. This is a chronic sickness; we need counselling.

Yeah, you’re right, and support for partners.

Yeah. You know, I don’t know what it would be like if I was the one turning the key every evening and coming into this, and leaving that every morning, I wouldn’t—I don’t know what it would be like, you know, yeah, I just think something needs to be done out there; counselling, not under the mental health umbrella but in general counselling for families, partners, etc.

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