In this section we cover how long Covid has affected:
- people’s working lives
- their family life
- their social life
In 2022, there will be a new part of the website with more detailed information on the impact of long Covid on families and family life.
Impact of long Covid on people’s working lives
Long Covid affected people’s working lives in different ways. Some people were not working at the time of the interview. Other people were still able to work. Some needed time off after getting Covid, and then returned on a part-time basis, at least to start with. This could help them to manage their health day to day and support their recovery.
People told us they had worried about whether they would ever be able to fully return to work and how they would cope, including financially, if they couldn’t go back to their previous job roles.
Terry worried their symptoms would end a career they enjoyed and had worked hard for.
Terry worried their symptoms would end a career they enjoyed and had worked hard for.
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I remember crying to my line manager in mid to late January because I said about muddling words up and not being able to think and stuff. I remember really crying and being frightened. I was like ‘I’m worried I can’t do my job, I’m worried this is my career over because I can’t do it, I can’t think. I don’t have the function’ and I was scared, I was really scared because my career matters to me... I’ve worked hard at it. I have worked part time with having children and stuff but it still matters to me and it’s still something that’s important. So, I was scared you know, you hear so many stories about people’s cognitive functioning never returning and it frightened me. So that was almost worse to deal with because it was this Groundhog Day of constant symptoms, constant debilitating pain and pressure and the inability to think and tiredness and breathlessness.
People who had been back at work since having long Covid told us about how they found some things very difficult. Some had difficulties with using a computer screen. People with ‘brain fog’ could find it difficult to do any mentally demanding tasks, like making decisions or putting their thoughts into words. This could affect people’s confidence in their ability to do their job or take away some of the enjoyment of work.
Rowan found it difficult to remember some conversations with colleagues. They worried about making decisions without checking with others first.
Rowan found it difficult to remember some conversations with colleagues. They worried about making decisions without checking with others first.
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Memory is the other side of it. I can be told something in one room and then I literally go into the other room, and I’m like ‘What was the answer to that?’ ... I can’t recall conversations very well and I often end up with a different answer to the other people in the conversation that we’ve agreed on. And that particularly for work is very challenging to manage. It makes you really question every memory you have, every answer you have. You think ‘Did I come up with that? Did someone else tell me that as the correct answer?’ It strips you of your ability to make a decision yourself, quite often.
Robert found it particularly challenging to carry out his job as a chef after losing his sense of taste and smell. He described losing some of the pleasure of his job.
Robert found it particularly challenging to carry out his job as a chef after losing his sense of taste and smell. He described losing some of the pleasure of his job.
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I don’t get anywhere near the enjoyment I used to get out. I mean, it’s a hard job being a chef and I'm not an office based chef. I'm working ten hours a day in a kitchen. And you, kind of, need that pleasure from it to, to get you through the day. You need to enjoy your job. Technically it’s all fine. But, like, you don’t get the satisfaction of cooking something, you know, spending all day on something and then, you know, I don’t even have to taste it. I can just smell it and I know it’s spot on and, you know, and things like that. [Not being able to taste and smell] takes a lot of the good parts away from the job. It’s helped my kitchen staff train up, because now I, I get them to season everything. My way of tasting of something seasoned now is I won't trust anyone, what anyone says. I’ll do what I think and when I think I'm right, I’ll try it, I’ll give it to someone to try and then I’ll just watch the face. And if, you know in their eyes if it's tasty or if they like it instantly or not like that. And then I, kind of, put more salt in, gauged on their reaction.
People told us about changes they had made to try to manage their work alongside their long Covid symptoms. Pat had to change their job role. Some people had to reduce their hours or work flexible hours so they could ‘pace’ themselves or stop when they felt unwell.
Pat used to enjoy their ‘difficult’ job working on complex projects. They find it ‘painful’ that they can no longer lead the team of people they brought together.
Pat used to enjoy their ‘difficult’ job working on complex projects. They find it ‘painful’ that they can no longer lead the team of people they brought together.
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I've never had any form of serious illness before. I have no chronic conditions, you know, I, I've always been a kind of relatively fit, and slightly overweight specimen. ... I enjoy challenges, I had a difficult job, which I enjoyed, and partly because it was difficult. I enjoy the challenges of managing teams, and having to engage in really complex projects, and figuring all this stuff out. I, It’s quite painful, only being able to do it in small bite-sized chunks, now. And really, so, you know, I recruited my replacements, I basically, I, the team that I'd built, I'd developed from scratch. I'd handed over to a chap who worked for me. And you know, it’s, you're giving your toys away [laugh].
Rowan learned that four hours of work was the maximum they could manage with having Long Covid.
Rowan learned that four hours of work was the maximum they could manage with having Long Covid.
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I then attempted a return to work following consultation with the doctor at occupational health. Initially I was working a small amount of hours, so working kind of two hours a day, next week three, four, five. I then had a relapse, so a lot of my symptoms then came back, so I had to take some more time off work, and I have now since this year, so 2021 I’ve now returned to work again in consultation with the occupational health on a four hours per day basis. And I am still balancing that with managing a lot of my symptoms... But that’s the point where I know where I am able to manage my symptoms that I can do four hours of work, but that is very much the maximum amount I can do.
Some people said they felt well supported by their employer in trying to manage their long Covid symptoms at work. The support of family, friends, and healthcare professionals was also important in enabling some people to return to work.
Morgan’s employer was supportive and agreed a phased return to work.
Morgan’s employer was supportive and agreed a phased return to work.
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My employer was very supportive. There was no pressure on me at all. The only pressure really was that what I put on myself. I’m lucky, there’s only one person more senior than me in the organisation and, as it happened, he got Covid about two weeks after I did so he was more than sympathetic because he really struggled with it too. I couldn’t have asked for a more supportive response, really, from work. The only pressure really was self-imposed on going back that…that I felt bad, that I wanted to be there, and I wanted, you know… But I did…I did take it easy at first. I did properly do a phased return, so …on the days that I wasn’t in work I didn’t work which wouldn’t always be the case before then. So yeah, that…that worked okay for me. I hope anybody who had Covid in my organisation had the same experience but, you know there’s no doubt that I had a good one.
Was the phased return…was that your idea or was that something suggested by HR or occupational health?
So, it was…it was suggested to me and I think generally in my organisation that’s the approach we took with people. We suggested that, you know…I mean, obviously it affected everybody in different ways and depending how severely you’d had it [Covid] but as I’d had three weeks off anyway, as part of our HR process, there would always be a conversation about whether a phased return was necessary or desirable.
Rae’s employers were supportive. They encouraged them to only complete as much work as they were able to each week.
Rae’s employers were supportive. They encouraged them to only complete as much work as they were able to each week.
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I must say the work has been very, very supportive, you know, my I can speak for my own department, honestly they’ve been very, very supportive, you know, the [most senior line manager] has been always, you know, sending messages every weekend, end of the week like, ‘oh just go and enjoy, just chill out, just have fun, if you can do what you can do if you cannot do it, don’t kill yourself. It is okay.’ So that assurance and I hope all employers do that to their, you know, to their work, to their employees because the last thing you need to survive an external pressures of, ‘This must be done now, this must be done now!’ you know.
Jessie found it helpful to work with an occupational therapist at work. She was ‘clued up’ about what having Long Covid was like and the support people needed at work.
Jessie found it helpful to work with an occupational therapist at work. She was ‘clued up’ about what having Long Covid was like and the support people needed at work.
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So, the occupational therapist, I spoke to her just last week and she was really good, partly because she has got other people who’ve also got long Covid and she’s pretty clued up about what it’s all about and other people’s experiences. And she knows that there’s quite a range of different experiences. And she was encouraging me to take more time off than I realised I needed based on what she’s seen from other patients. She’s saying with other patients, that she had been advising them when they return to work to focus on tasks rather than time because she’s aware of the cognitive aspect of it. So, she’s been really clued up, which is nice.
A neuropsychologist helped Nicky to achieve their goal of returning to work. They learned to be easier on themself and tried to accept that when they returned to work was beyond her control.
A neuropsychologist helped Nicky to achieve their goal of returning to work. They learned to be easier on themself and tried to accept that when they returned to work was beyond her control.
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So, I saw a neuropsychologist, who’s fantastic, really good, She did cognitive testing with me, but she also started doing, in essence, I think, a bit of CBT, really, around, cognition, and rehab, getting back to work. Because that was my goal. So, she really gave me the tools to help me see that these thoughts are not helpful, cut myself some slack. I, It will happen when it happens. I think that stopped me from getting depressed again, worry about work, really. I've been back for, I think, seven weeks now, but on a phased return.
Unfortunately, other people reported less positive experiences with their employer. For example, (Ali) was dismissed from their job after having Covid.
Ali felt ‘abandoned’ and let down by their employer. Although they felt sad about leaving work, they felt too ill to fight and chose instead to focus their energy on getting better.
Ali felt ‘abandoned’ and let down by their employer. Although they felt sad about leaving work, they felt too ill to fight and chose instead to focus their energy on getting better.
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[My employer said] ‘You go and look at what job is available that you like on [inaudible] website ... and if you can’t fulfil those jobs, I’m sorry, that’s all we have for you.” So that’s really not like really much to talk about, isn’t it, because that’s basically it. So, they’re protecting themselves. They say, “Oh we have this, we’re giving you the choices [and] since you can’t find anything suitable, we are letting you go.’ So that that’s the way it is. Unfortunately, I believe a lot of other people in my situation were faced some [inaudible] as well. I believe I’m not the only one, it’s easier to [inaudible] than, basically, to face the reality that more and more people are going to have this, yeah. And, basically, they put it in a way that, ‘We gave it to you but you didn’t find anything suitable so that’s it.
So, legally, they are not wrong but ethically, if you look at it of a person contributing to service in your company for over two years, picking up extra hours when you need it and helping out and that’s where I told you about the feeling of abandonment come in over the seven stages of grief that you actually felt that let down and why me and all those things again. The grief of losing my self-identity as a contributing member of the of the community and at the same time, feeling like I’m abandoned. T… It’s sad but there’s no point fighting because I’m just so ill, I’m just sick and tired. I just want to just get well. Put myself first, put myself first, and [instead of] trying to reason with people which are unreasonable. And choosing, it’s not, it’s not worry, some battle, you’ve got to choose the correct battle. And this is one I’m not going to battle with because there’s no point.
Work can be very important for people and can have positive health and other benefits. However, some people thought in hindsight that going back to work before being fully ready may have caused setbacks in their recovery. Some people said they had tried to return to work too early because they wanted to get back to ‘normal’ or for practical reasons or because they felt that they had no choice.
Robin went back to work when they were still unwell. They wanted to get back to some normality. When they felt unwell at work, they found it difficult to explain to colleagues.
Robin went back to work when they were still unwell. They wanted to get back to some normality. When they felt unwell at work, they found it difficult to explain to colleagues.
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[I] went back in June. I was quite glad to go back, I still didn’t feel well, but I was glad to go back to get a bit of normality. And to be honest, I probably shouldn’t have went back because I was still struggling, but like I said, I just wanted that wee bit of normality in my life, and a wee bit of……just like a regime back, if you know what I mean. Getting up…I think a lot of people have realised that work is sometimes a good thing [laugh], to go and take your mind off things, and try and…but I probably wasn’t ready.
Jessie says they should have taken more time off work to recover and advises others try to rest as much as possible after having covid.
Jessie says they should have taken more time off work to recover and advises others try to rest as much as possible after having covid.
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I suppose if there was somebody who was just beginning to have long Covid or they thought they might have it or they were in the recovery phase of having Covid itself then probably to rest as much as possible, maybe more than they think they need. And from my point of view, I probably should have rested, just taken time off work much earlier but I didn’t realise that was something that I needed to do and I don’t know whether it would have made a difference at the time.
Some people experienced worsening symptoms despite having made changes to try to protect their health at work.
Rae finds they are very fatigued in the evenings after starting and finishing work later than usual to try to manage Long Covid symptoms.
Rae finds they are very fatigued in the evenings after starting and finishing work later than usual to try to manage Long Covid symptoms.
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Just tired, just have this fatigue you can’t explain it. You just feel tired and sometimes getting starting the day or ending the day you’re just getting so tired and I’ve had instances where I’ve called my boss like, ’Oh please can I just start two hours later with work because I’m just so tired.’ And they were fine, you know, you know, she said, ‘It’s fine, you can start two hours later, but also I found out I have to do two hours later as well, finish two hours later and that start crushing with the evening chores and then you continue getting tireder and tireder because your day’s so prolonged with the rigid things to do because you can’t delay dinner time. You have to keep on working because you started late, you have to finish late so I’m just in that cycle of trying to find the best way to manage it and you know, it’s very difficult, you can’t say, ‘I’m sick, sick, like I’m off sick,’ per se but you just want people to understand like you are on a very reduced capacity kind of thing.
Nicky spent non-work time recovering from symptoms which were made worse by doing their work. This meant they were able to spend less time on other things, such as socialising.
Nicky spent non-work time recovering from symptoms which were made worse by doing their work. This meant they were able to spend less time on other things, such as socialising.
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So, I'm still on very reduced hours, probably about half my full-time hours. But what I've found is, when I'm working, the cognitive side of things is quite difficult, and really tiring. And when I've finished for the morning, the afternoons are spent recovering from that. So, I don’t, I don’t really, I don’t do anything for the rest of the day, because I'm having to get past that cognitive fatigue. And it can accumulate, as well, so by the time I get to the end of the week, I'm feeling much more tired than I was at the start, having worked one morning.
I pay for it afterwards. So, I'm still not completely out of the woods, unfortunately, a lot of things have got better, but in terms of interests, doing things, seeing people, I'm still a bit hit or miss, and I often just don’t have the energy to do it, if I've been working.
Impact of long Covid on family life
People we spoke to told us about how long Covid made some of their family roles - like cooking, housework or looking after their children - more difficult. The demands of home schooling could make it particularly difficult to get enough rest.
Robert lost some of his enjoyment of cooking for his family after losing his sense of taste and smell
Robert lost some of his enjoyment of cooking for his family after losing his sense of taste and smell
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I cook at home all the time and, you know, there’s been a few occasions where I’ve cooked dinner and it’s just, I’ve completely messed the seasoning up on it and it’s been awful and, or I’ve thought I've cooked something amazing that I can taste a bit of and I sit down and everyone’s just gone, bland, you know, there was nothing in it, you know, and things like that. So, I mean, it is, it’s not very, not very nice at all.
I probably have a few, the odd takeaway a bit more now or the odd thing a bit more now just because you're energised by the idea of cooking dinner as well, you know, when you, when you, when you like what you’re cooking, and, you know, sometimes the motivation isn't quite as strong. But, you know, I, of course I do, I do and it’s nice to see them enjoy it.
Penny felt she was less patient than usual with her children after she became very sensitive to noise.
Penny felt she was less patient than usual with her children after she became very sensitive to noise.
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I was really noise sensitive, which is obviously ideal when you’ve got a three year old and a five year old [laughs], who were then getting better at that point. You know, you also when you’re ill don’t have the option of not parenting because that option doesn’t exist. So I’m still trying to do things with them and keep them happy and craft and this and that. And what…and it was just really difficult with the noise. The kids probably got shouted at quite a lot during that period from me, because…disproportionately to how I would normally be. Because to me they felt so loud.
Jamie was sorry that he sometimes felt unable to be fully ‘in the moment’ with his young son. He was worried that his symptoms might flare up if he did too much.
Jamie was sorry that he sometimes felt unable to be fully ‘in the moment’ with his young son. He was worried that his symptoms might flare up if he did too much.
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I’ve got a great relationship with him… he's changed my life, that wee boy, to be honest. It’s been bittersweet, because I’ve got this brilliant wee boy that I love so much, but it’s the first couple of years of his life, I just feel like I’ve not fully enjoyed it because of this, kind of hanging over me this last year. It’s, it just kind of puts a burden on things, like when I'm taking him out, I think to myself, right, if I go and do this with him, is it going to, am I going to pay for it later, or tomorrow, when I feel rubbish again.
Judy thinks that ‘traditional’ gender roles can make it hard for women with long Covid to get enough rest.
Judy thinks that ‘traditional’ gender roles can make it hard for women with long Covid to get enough rest.
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So if you look at the time when we were first sitting with it and the emphasis wasn’t so much on airborne stuff, it was all on cleaning down door handles and light switches and washing towels and all this kind of stuff. And at that time, me and my son were trying not to give it to my husband, so we were trying to do isolation within the house as well. And you know what it means in practice is a whole bunch of housework, extra housework, when you’re not feeling well [laughs]. You know, it’s like I can understand why it’s good advice but, you know, it’s not going to help the people who have it. And if you want to take a guess at predominantly who those people will be that are washing the light switches the most, they’ll be women, won’t they? And we know that it’s mostly women who are taking up the burden of home schooling. And that was happening maybe more so in the second wave of it. So, I think there’s a whole bunch of kind of like societal issues which are not helping with those experiences of long Covid.
And there’s probably a whole set of expectations about what women should be doing which is maybe not helping with…like I think it’s really hard to rest and it was almost impossible for me to rest with the whole home-schooling thing. Like, my husband was saying, “You know, I can do it.” And he was, he was doing…we were trying to divide it up equally. But I was just not in a head space where there was a really responsible role as a parent being asked of me and like I couldn’t not do that.
When people were struggling with their long Covid symptoms they were grateful for practical and emotional support from family.
Adele felt lucky to live with someone who could give her so much help when she needed it. Her partner did ‘everything’ for her for months after she became unwell.
Adele felt lucky to live with someone who could give her so much help when she needed it. Her partner did ‘everything’ for her for months after she became unwell.
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In the acute phase, it was really difficult. I was very fortunate to live with someone, and he has been amazing, he’s really helped, he did everything for a really long time. There was no way I was going to manage to stand, to cook, or you know, getting to the shower was, was difficult. He helped with a lot. I don’t know what I would have done if I was on my own, I think I probably, I just don’t know. I mean, I’m saying, I think I probably would have had to have gone and stayed with family, but then if you have Covid, you can’t, you know. So that must be really difficult for people. Gradually, and I mean, months in, things started getting better, and I started being able to do more. But for months, and months, he did everything.
Impact of long Covid on social life
In this section, we cover how long Covid affected people’s social life, hobbies and interests. Most people we spoke to got covid in March-May 2020 when major restrictions on daily life were in place. This may have been the reason why people did not talk as much about their social life as they did about other parts of their life. We plan to expand this section in 2022 when we have spoken to more people with long Covid, including people who got Covid later in 2020 or in 2021 when strict lockdowns weren’t in place. People did talk about how they missed doing things that they enjoyed on their own, or with friends. Mahabuba said how grateful she was to a friend who helped out when she and her husband were both ill.
Sophie liked to keep active before she became ill. She wasn’t able to keep up her activities and her symptoms affected her studying too.
Sophie liked to keep active before she became ill. She wasn’t able to keep up her activities and her symptoms affected her studying too.
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So, I was very…got quite high energy anyway, like I’m not somebody that kind of just sits about, that kind of thing, so when I took ill, that…that impacted that, I had to postpone one of my exams for my studying. It affected the amount of studying that I could do, it just happened to be the time where I would be starting the revision for my exams…so that’s really impacted that and stuff. I don’t know if I’ll, you know, if I would really have been able to do it to the standard that I would have been able to do, so I’ve had to put in special circumstances to my university. And so, say and declare as well, I’ve got a disability, through that, process. I was really active as well, so I was doing a lot of activities, in my free time, like hill walking. I was also, doing maybe running three times a week and also just do exercises daily, it was just something I like to do, keep healthy, and it impacted that because I’m not able to do that anymore.
Grayson says Long Covid has affected his hobbies of hill walking and visiting the theatre. He is more nervous about going on walks on his own and self-conscious about coughing in public.
Grayson says Long Covid has affected his hobbies of hill walking and visiting the theatre. He is more nervous about going on walks on his own and self-conscious about coughing in public.
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After my first hip replacement I’d managed to do hill-walking as a way of exercising it and started to do that after my second hip replacement. It’s been really difficult to do since I had Covid, and yeah, all sorts of things contributing to that, but walking on, you know, uneven surfaces and I have a bit of a fear if I’m on my own of being on my own and not being able to get help if I need it. So, it’s affected my confidence about hill walking. I found I was trying to work this out, thinking about this interview actually, I probably haven’t…I’m living in [place name] and I…I would always go [place name] two to three times a week for two or three-hour walks. I haven’t done that or only done it very rarely and with other people. I feel less confident about doing it on my own now. And I really hope that I can overcome that and get…you know, it’s good for my mental health and good for my physical health through exercise like that. So, I do try and focus on walking so I, you know, try and do ten thousand steps a day, probably averaging about eight, eight and a half thousand at the moment. I don’t do as well as I should, but just make sure that I, you know, go and walk round the park and…but I’ve got less adventurous about where I’ll go walking and fearful of it.
And what about in terms of the lung and the kind of asthma type symptoms how do they impact you day to day?
Funnily enough, I mean, it doesn’t…interestingly, I don’t worry about that, I mean, there have been occasions where I’ve been short of breath when I’ve been climbing hills but, you know, going uphill weirdly the…I’ve just recently started going back to the theatre to see…music and theatre and so on, and I feel incredibly self-conscious about coughing [laughs]…and whether it’s because you just think everyone’s going to think he’s got Covid, what’s he doing here, you know? So that… and of course if ever you try and suppress a cough, it, like, makes you want to cough…So I’ve…I have felt, you know, just talking about it now, it’s making me want to cough. You know, that awful feeling of being in a crowded place with other people, most of whom are not wearing masks and thinking I don’t want to be that person who coughs, you know? Everyone’s going to look daggers at me and think I’m some super-spreader, you know? So, it’s…that’s interesting, it’s…you know, I have enjoyed my visits to the theatre but that’s definitely a feature of them.
Jennifer found it hard not to be able to join in with social activities after Covid restrictions on daily life started to ease.
Jennifer found it hard not to be able to join in with social activities after Covid restrictions on daily life started to ease.
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Like last summer when people were a bit more free, I wasn’t well enough to go anywhere so I wasn’t doing anything. So, I think that’s when it kind of hits more is when other people are going out and arranging lunches or something, I think that’s when it’ll be harder if I don’t feel well enough to go.
Mahabuba and her husband were able to call on their friends for help.
Mahabuba and her husband were able to call on their friends for help.
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Some friends is really good that time. They come, they drop the food, they help and that. Not that way I need something and my husband call his friend, “Okay, can you buy some citrus? Can milk.” Like you know, milk, bread, egg, basic thing. That’s thing I got it but not just for like, you know, whole week or ten days, like two days or three days thing. He call, my husband, his friend. In between ten days, four, five friends just. I cook but, you know, this coronavirus take a lot of thing from you and is make you learn lot of thing, you know, you learn lot of thing like you know the people, how is the people, how is the thing for people, they just came. You know, there is the, they just…I will say, my friend, my friend got coronavirus as well. I cook food and give it to them. You know, like helping what I can do and this but, you know, we know a lot of people like that, you know, we’re not saying bad ways. Different people is different but there’s people who call you every week, they message, “Are you okay? Are you feeling better? Are you got any else?”.
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