Family experiences of Long Covid

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.

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.

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.

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.

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.

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.

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.

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.

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?’

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.

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.

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.

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.

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.

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.

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.