Recovery and considering the future after Long Covid

When young people and parents talked to us about the future, they raised different worries and hopes. They also shared strategies for living with the uncertainty of the future. On this page we cover:

  • Difficulties planning for the future
  • Uncertainty and optimism about long-term health and recovery
  • Worries about missing out on education and falling behind

You can read more about what adults with Long Covid thought about the future and their chances of recovery here.

Difficulties planning for the future

People talked about their hopes for their, or their child’s, recovery. Some worried a lot when they thought about the future and felt unsure about when or even whether they would get better.

Charlotte described “lots of worries” – whether she would get better, and the impact of her illness on her family life and her job.

Yeah, I worry if they get Covid and be like me. Because there has been talk of these like PoTS [an abnormal increase in heart rate that occurs after sitting up or standing] and the things they’ve told me have been genetic. I think it’s, will I pass that onto them. Will they react badly? I worry that I’m not gonna get better and it’s gonna be some sort of autoimmune condition and I’m not gonna be here for it. And I worry that I’m gonna stay as I am and never be able to be part of their lives. I worry me husband’s will want somebody else because you know, I’m poorly and not bringing a lot to his life, but stress. So, yeah, lots of worries. Worries financially. What am I gonna do when my pay stops and I worry I’ll lose my nursing qualification if I can’t get back soon that if…years you’ve not worked, you lose it. I’ve done coming up 18 months. So, lots of worries.

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Danie, whose child had Long Covid, told us “It feels like we can’t really plan that far ahead, because we’ve got the appointments in place, but we don’t know what’s going to happen in-between those appointments and what they’re going to say.” Not knowing how symptoms might progress made it difficult to plan for the future. When we interviewed Felix, he was feeling “pretty terrible” about the future. He had “no idea” what was going to happen next. Sonal, a parent, had been through a period when she felt “I will never recover.” When she looked out of the window and saw people walking in the street, she had “that kind of fearful feeling that I will never be able to do these things that other people are doing.”

Michelle worried about whether her child would be able to go back to school and how Covid would carry on affecting people in the future.

But school does pose massive challenges and being around other people, but it’s just, I don’t know what the…how the future is ever going to pan out because every time…like, over Christmas he was on a course of antibiotics, two courses of steroids and two courses of antibiotics, we managed to clear up the previous infection that he had, I think we’ve had about seven days of wellness, he went back to school for…he’s been back at school for a week and he’s gone [swish sound] straight back into a period of un-wellness.

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This was particularly difficult for young people in their 20s or early 30s who felt a huge loss of independence and disruption to life plans.

Hannah, a young woman in her 20s, wanted her old life back but she worried that she could not manage her anxiety symptoms if she moved away from her parents.

Yeah, I'm…when I think about moving out and being away from my parents, I literally get so anxious because the only person that can stop me from having a panic attack is my mum, and when I have panic attacks like they are like genuinely one of the worst things I've ever experienced, and they last for like hours, so I'm nervous about that, but obviously that won't be for a few years, I need to like be work and have a job for like a few years before I move out. I am a bit nervous that when I…obviously the job I'm going into is going to be nine-to-five, I'm nervous that I'm going to…because I do get tired easily, and obviously I was doing a lot of work for my degree, but it was on my terms: like if wanted to lay in a bit later and do work later, that was OK, so I'm nervous that that schedule’s going to make me really exhausted and I'm not going to be able to cope with it and I'm not going to be able to perform as well as I want to.

I also do have a trait to just like even like just push through and be like, ‘you're doing it anyway,’ and so am I'm worried that I'm going to make myself worse, which I don't want to do at all. I'm not worried for the anxiety to go, I'm really excited if that goes, but that would be amazing if it did go. And I want normality, I want my old life back where I can like…not even…no, I'm not bothered about the alcohol, but just like be able to have fun and not sit there worrying I'm going to throw up, if I stay out then I'm going to get like a sick bug, or I'm going to get poorly, that I want that part of my life back, like I miss that part of me a lot; it was fun, yeah that.

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A specific concern that Sara had was about whether she could plan to have another child. Lachlan also felt that expanding their family at this time was out of the question.

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

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

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

Yeah.

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

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

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

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

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

Yes.

Is there things that still worry you about that?

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

The pregnancy you mean?

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

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

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

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

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

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One strategy that some people used to help live with uncertainty was to focus on everyday routines and the immediate future. Helen tried “not to think too far ahead.” She didn’t want to plan for the following year in case she and her son still were not well. Razia said, “it’s a day at a time…I think I live on hope.” Michelle said Covid had “literally rocked our world – it’s been probably the hardest time of my life ever.” It was difficult to make long-term plans whilst wondering if she would get better.

Lucy B doesn’t like to talk about the future because she doesn’t know what it will look like. She’s taking things day by day.

It’s interesting, me and mum discussed this yesterday because I think up until recently, I had a lot of hope with it being this Long Covid but I would slowly improve, but now I’ve got different diagnosis such as PoTS (Postural tachycardia syndrome – an abnormal increase in heart rate that occurs after sitting up or standing) and EDS (Ehlers-Danlos syndromes are a group of rare inherited conditions that affect connective tissue) which are lifelong syndromes. My outlook has changed and I feel like it’s not, life sentence sounds really dramatic, but it’s a lifelong, they’re lifelong syndromes, so, although I kind get stronger, I hope, I’m gonna have to get used to this changed way of living but it was funny, mum said yesterday, quite a while over the last two years, I just wouldn't talk about the future and I found it really difficult to plan anything.

Sorry, can I clarify, did she say she wouldn't talk about the future or you wouldn’t talk about it.

I wouldn’t.

You wouldn’t.

I don’t talk about the future. I would shut down the conversation just because I was so fearful of what the future would bring and still am. I, I can’t imagine what my future will look like at the moment. I just try to take it day by day because I think I’m quite a logistical person and on a day-to-day basis, I still need lots of help and I know what the social services are like and I know what the council is like because I used to work with deaf people and deaf people that have additional disabilities. And I know how hard it is to get carers and things like that. And I obviously think it’s one thing relying on your family but having to have someone else come in is a completely different scenario to get my head around. Yeah, so at the moment, I’m taking it day-by-day, can’t really answer that one. I know where I live it would have to be ground floor [laughs] I know that much. And an adapted bathroom because it’s really difficult washing with the temperature and with standing. And career wise, I find that incredibly difficult to talk about because it took me ten years to become an interpreter. They say it takes a minimum of seven. And I’m not quite ready to admit or give up on the profession. But my cognitive dysfunction depends on how it does and not being able to process two languages at once. I have to really assess that at some point.

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Uncertainty and optimism about long term recovery and health

Parents described the challenges of worrying about their children, particularly the uncertainty about when, or whether, their child would recover from Long Covid. Deirdre, whose daughter had Long Covid, wanted people to understand the reality of Long Covid and that “there are lots of children that are suffering.” She said, “All I want to know is ‘Is there going to be an end to it?’ I just hope someone can research enough to find out whether she will get better.” Lindsey wasn’t ready to accept that her partner’s and son’s health problems may be permanent. Emma A had “no idea” when her daughter, who had not walked for 11 weeks, would walk again.

Catherine said there were so many uncertainties about her son’s illness and future. She has found it helpful to accept that the situation won’t resolve quickly.

We were wondering, is it going to get better? What’s the cause of it? How can we help that and there still aren’t really any answers. So, a lot of uncertainty to deal with about, you know, what’s happening to his body and what the mechanism is for that and do we have any effective treatments, not really. We don’t know the problems, we don’t know how long it’s going to last and what the likelihood is of recovery whether it be a full recovery or not. We just don’t know the answers to any of those questions. And whilst he’s, you know, I’ve found that when he’s kind of making slow improvements, we can handle that and that’s good or we take each improvement and I’m really pleased about it and even though he’s not functioning as he should do and not able to go to college and or see his friends, lots of things he can’t do.

Thinking about the future, how do you feel looking forward?

It’s hard to—I think, you know, I think we’ve kind of come to a place of kind of accepting where we are at a bit more. And I think that that’s helpful with your, you know, initially I was thinking, ‘Oh that’ll just be a couple of weeks and he’ll get better’ or I might be thinking as time went on, ‘Oh another month or two and he’ll get better. He’ll be better in time to go to sixth form.’ He’ll be, you know, and that was actually said to us, he’ll be better in time to go to sixth form. And so, I think with the big crash he had in October I realised that actually this was going to go on for longer. I don’t know how long, and it might be years, might not just be one year, it might be several years or many years or forever. I don't know. I hope, I really hope it won’t and I hope he’ll get better in the next few months. And that’s really what I’m expecting. But there is the possibility that actually that’s not going to happen.

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Some parents had begun to see signs of recovery. Emma B saw some small improvement in her daughter Freya’s health but was disheartened when she “crashed” again after going back to school. She said even any small improvement “is a big gain” but “you feel like you’re plateauing a bit…you convince yourself a bit she’s cured, she seems loads better and then she goes to school once and it’s like ‘Boom!’ It’s like starting all over again.”

Evie, Jasmine, and Gracie were all teenagers with Long Covid. Evie told us, “It’s difficult to look into the future because I don’t know if things are going to get better. I do have hope that it will get better, it’s just I don’t know how soon.” Jasmine had been frustrated when her symptoms flared up after she got Covid again. This was after she had “just started to feel she was getting better.” Gracie and her mum had seen some improvement in Gracie’s health. When she was first ill, she could only crawl upstairs whereas now she could walk up. But they both felt like she’d “kind of plateaued.”

Gracie and her mum found it hard to think how she had been before she was ill. Gracie’s mum said, “every day’s like Groundhog Day.”

Mum: “I think we’ve kind of plateaued, I think this is what I think is as good it’s going to get,” and she kind of agreed with us in a way because we haven't seen any kind of like massive improvement, and so is it easier to kind of just accept this is as good as it’s going to be and you've lost, well, we’ve never lost you but that vibrant girl. And this is what and you, but then you think, ‘No, you can’t give up, you can’t give up, there’s got to be something, is it going to be too late to get her back to baseline?’ It’s heartbreaking, isn’t it really? It’s quite upsetting talking about it and looking back through all the notes that we’ve got—

Gracie: It makes us upset seeing that old self, and when I see photos of me in the summer around that time, it’s sad because it’s just when it’s about to happen, literally like—

Mum: Yeah.

…Seeing her go through so, so much in—from that very beginning to thinking…or struggling to get her things to eat was an absolute…it was awful, seeing her crying because she couldn't eat the things she used to eat and then you would get a couple of foods that she could eat, but then the weight’s fallen off her, and then it goes from that to this the fatigue, and this little girl who—

Gracie: I used to do cartwheels.

Mum: Yeah, like the life’s been sucked out of her, and then everything else happening after that, and then it’s like every day’s like Groundhog Day, there’s no like—

Gracie: What’s that?

Mum: Every day’s the same.

Gracie: Okay.

Mum: There’s no, you know, improvement when you’re seeing a glimmer of her being able to be that child she once was, and it just, it just, it breaks your heart.

Gracie: Literally, when I do be the child I once was, the next day, I’m flat out, you know?

Mum: Yeah.

Gracie: I like swings though because, and you can sit like and have fun.

Mum: Yeah.

Gracie: [uh-huh]

Mum: It’s hard, yeah, and it’s that not knowing, not knowing, is she ever going to be back to the way that that she was? Yeah.

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Others had begun to see more concrete signs of improvement. Sasha described being “very relieved,” “really, really pleased,” and “absolutely thrilled” as she began to see signs of her daughter recovering.

Sasha’s daughter was gaining strength and seeing friends again.

I wondered if you would just be able to tell me how things have been, you mentioned in your e-mails that there’s sort of, [your daughter] was starting to show some signs of improvement when I spoke to you the last time but that that’s continued recently?
 
Yes we’ve been thrilled, yeah definitely she’s going from strength to strength so she’s stopped the Fortisip drinks that she was having and started eating again, yeah. Her mobility’s improved and she’s started to use her left arm which we were quite worried about, so…and she’s wanting to go out, she’s started to come in the bus, in the car to the bus stop. And she’s seen a couple of friends, she’s got dressed again so her skin problems are improving. Not, not entirely gone but all going in the right direction, so. She’s even started wanting to do a bit of schoolwork [laughs]. So we’re really, really pleased yeah, she’s at home, just building up her eating and her strength and then we’ve had a meeting with the school about a very gradual return which really just helps her socially reintegrate before we try and address what she may have missed.

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Although it will still take a long time, Lucy A and her mum now feel she’s on the road to recovery. She’s able to see friends again. Several things had helped her “in their own little ways.”

Lucy: It’s going to be a while. And I know that, but I’m just, I’m glad that we’re actually making progress because like back then if I’m in a little bit of progress, it wasn’t that obvious [laughs]. And it would, I would lose it in like a day. So, it wouldn't really be progress. And I couldn't actually see a genuine change. And I know it’s going to take a long time, but it’s fine because I know I’m actually on the road to recovery and it’s not just something, you know.

Mum: Yeah, I mean she’s still obviously, if she does too much, it’s still causing problems. But the Long Covid physio said it’s going to take months. All the effort she’s putting in now, she’ll see the fruition of it properly within hopefully a few months.

Interviewer: That’s absolutely great. And are you feeling better in yourself as well then?

Mum: Yeah. I kind of, I lost hope for a bit. I was like, ‘It’s been over a year. I’m not going to…,’ you know, but yay [laughs].

Interviewer: You’ll keep those, yeah, keep those, keep those fists going [laughs]. Yeah, that’s so good to hear. And do you think, it sounds like you’ve had quite a whole combination of things then. You’ve got your advice from the Long Covid clinic and the acupuncture and better sleep. Do you think any one of those things has helped in particular or do you think it’s a combination?

Mum: It’s all of them, definitely. I think they all help in their own little ways. Yeah, there were definite signs of improvement before we started the acupuncture just from getting the sleep routine down and it seems it went against everything to stop her napping when she was so exhausted. But I actually think that made quite a difference—

Lucy: It helped the sleep routine more.

Mum: Yeah, it just helped you reset everything, even though it was really a struggle.

Lucy: That was definitely one of the really hard parts is not napping, because I just, I couldn't open my eyes sometimes. I just, I needed sleep.

Lucy: Yeah, I haven't been able to go into town in months. Like ages, I haven't, like so many shops have changed. And I was like, ‘Oh my god this is a new shop’ and everyone is like ‘That’s been there for ages. What are you talking about?’ It was really nice, yeah. It’s definitely. It’s cool [laughs].

Interviewer: That’s great. It sounds like you’re feeling much more like your old self Lucy, would that be—

Lucy: I’m definitely more excited about everything and yeah.

Mum: Hopeful.

Lucy: Hopeful, yeah. I’ve got positivity. Yeah.

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Sasha’s daughter was gaining strength and seeing friends again.

I wondered if you would just be able to tell me how things have been, you mentioned in your e-mails that there’s sort of, [your daughter] was starting to show some signs of improvement when I spoke to you the last time but that that’s continued recently?
 
Yes we’ve been thrilled, yeah definitely she’s going from strength to strength so she’s stopped the Fortisip drinks that she was having and started eating again, yeah. Her mobility’s improved and she’s started to use her left arm which we were quite worried about, so…and she’s wanting to go out, she’s started to come in the bus, in the car to the bus stop. And she’s seen a couple of friends, she’s got dressed again so her skin problems are improving. Not, not entirely gone but all going in the right direction, so. She’s even started wanting to do a bit of schoolwork [laughs]. So we’re really, really pleased yeah, she’s at home, just building up her eating and her strength and then we’ve had a meeting with the school about a very gradual return which really just helps her socially reintegrate before we try and address what she may have missed.

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Amal was also feeling optimistic about recovering and said, “I definitely feel like it will go away. I’m thinking hopefully in a couple of months maybe. Let’s just hope because it is getting better. Like it’s there, but it’s barely there. Do you get what I mean?”

Callum, a young person in his early 30s who had had to move back home with his parents, has had an ‘up and down relationship’ with his sense of hope.

Callum is focused on improving his quality of life rather than pinning his hopes on a complete recovery.

Yeah. And, I’ve had a very up and down relationship with my sense of hope, with my sense of what like reasonable expectations and outcomes are from this. So, at the very start like I held, I hung on for a very long time to the idea that I’m just a week or two away from like getting better… And, you know, there’s still a part of me that obviously, that thinks that could be possible that like, you know, like I could wake up in, you know, some period of time away and it’s just gone. And that has happened to people before and not just through acts of God or like Mother Theresa, you know, but I think that…there’s another part of me that kind of thinks that that kind of hope is a bit counterproductive that rather than me hoping that it would get better, that there’s lots of things that I can do, I do which improves my quality of life now. And I’ve kind of evolved from that sense of desperately hoping that I just, I’m able just to get better. That it just happens. Through to occasionally having like moments of optimism, which is pinned on medical advances, and understanding that research is happening. Some very promising things are coming through.

It just may take, you know, a long time for that to filter through. But I’m gonna be here for the long run. I have made that decision. I’m not going anywhere as long as I can help it. So, I think that helps, that sense of ‘Well I’m here like I’m in, I’m in my life like I have enough value. I have enough things that are going on.’ If I just wait around long enough, maybe spontaneous remission will happen. Maybe like medicine will find a cure. Maybe my quality of life will continue to improve. Maybe I just get a little bit better and it’s good. And I think that again like I, my recovery at times has felt very non-linear.

But on the scale of years, it has, it looks more linear and it looks more like a slow, steady recovery. So, it also makes me feel like well, you know, that’s the case. But I don’t pin too much of an idea of what my cure looks like or my recovery looks like because, you know, even six months ago, the things that I’ve managed to achieve for myself and quality of life improvements that have come from like, you know, understanding my pacing better. Recently, I bought a lounger, like a camping lounger luxury bed because I’m a bit extra! And that meant that I was able to attend an event where I was able to lie down, just be on the bed and do a bit of work on my laptop and then lie down for a bit.

But I don’t mind jumping those hoops if it means that I have a day in bed and I’m not even really in bed like I’m at 60% of my baseline. I, you know, like I’m still able to like get up for tea and stuff or like you know, like I feel comfortable getting up, going to the toilet because sometimes when I’m a bit overdone it’ll be quite uncomfortable for me to go use the loo. So yeah like I yeah, I feel like the stage that I’m at now is one where I can more confidently make those changes that I need to. And, I guess that had tied into my whole means that I don’t have to hang a carrot in front of me. I can just live. I don’t have to necessarily think about getting better. It’s something that’s maybe in the back of my mind pinned to like I said I get better or you know, a cure is found or whatever or treatment is found. But my day-to-day isn’t pinned on me getting better. It’s pinned on me trying to optimise my life better from my disability.

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Worries about missing out on education and falling behind

A specific worry that some teenagers and their parents talked about was the impact of having Long Covid on their education. Amira said to us, “I feel scared like it’s never going to get better.” She was worried that if she didn’t get better, she wouldn’t be able to do her exams. Colin talked about how challenging it was for his daughter to have any continuity at school. Rosie worried about missing her exams and falling behind, and Ben and Lucy were keen to get back to school.

Colin is trying to support his daughter to manage some lessons at school and do the subjects which are more achievable at the moment.

She can’t engage with school beyond occasionally I manage to get her in for an art lesson. Art is really what she wants to do; art is what she loves. She wants to go to art college, and cognitively, it’s easier for her to do that than try and do A Level Psychology which is, you know, it’s just pie in the sky at the moment. But if we can support her and work with the school to at least get her through the art, that would be a massive achievement I think, and would make her feel better about things.

So, she’s actually looking and exploring this, might be something you want to ask her about? About interpreting her experience of Long Covid through her art as her, sort of, project that she has to do a project this year, so her teachers encouraged her to think about ways that she could look at that. So she’s thinking about how she might, she might represent, you know, her old self as a dancer and her new self as a bed-ridden, you know, so that’s—at least that’s something that she can do.

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Abigail, who loved P.E., told us “Once I’m eventually fully recovered from Covid, I am going to go out there and do all the exercises in the world because I haven’t been able to move for so long… I’m just going to do all the sports in the world because I need my life back.”

Michael doesn’t look as far into the future anymore but hopes to be able to complete his medical training.

Yeah. Well, I think what I try and do is I try and plan for the best and kind of, but I stay kind of in reality. So, with the university, every year I plan to do an intercalated degree, maybe part time and then I make the decision last minute because the university have been good to me. So, far, they’ve let me choose what, what I do, which I’m very grateful for. So, I had a plan for the best, I hope that I try things out constantly. So, I’m constantly trying out kind of you know, safe kind of therapeutic options that hopefully would improve me. To varying degrees of success. So, yeah, I think I don’t really look too far in the future anymore. I think as I would’ve done. I would’ve been like what specialty am I going to go into. Where am I going to live? I can go to Australia, you know, all these kind of things like that. And then it’s like once, once Long Covid hits, it’s like, oh, nothing is certain. I wasn’t expecting this to happen to me. Imagine what could happen next. You know, it’s not like in a catastrophising way, but in a philosophical way.

I just hope that I can be well enough one day to complete my medical degree and become a doctor and help and believe people, basically. I think I’ve learned an awful lot from this experience about how I would treat patients if I could become a doctor. And it’s basically just the foundation of kind of believing people and doing everything that you can to help them, even if you don’t have all the answers, all the guidelines in place.

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Michael told us he’d “learned an awful lot” from having Long Covid which would affect how he would treat patients in future, recognising the importance of “believing people and doing everything that you can to help them, even if you don’t have all the answers, all the guidelines in place.”