Table 3 Emerging themes and subthemes with illustrative quotes

Having an unknown chronic illness

Reactions

1. It was very depressing at first when not much was known about it. You start to think it’s all in your head or you are going crazy. I joined support groups and forums. I also started searching the internet and medical journals. I was also talking to different sufferers and professionals (PD)

2. It was very confusing. Nobody was telling me what it was even when I was not recovering for a long time. You don't know what's happening to you and nobody explained you anything, you feel left aside and like you're crazy, and nobody (PB) understands you, so yeah, it's not a very positive experience

3. I thought I was imagining it because nobody understood. I mean like some of them were saying. Can't believe why you still moaning snap out of it and things like that It was only after going to the group and talking to other people that I related to their symptoms. I thought that is exactly how I feel, and my mind is not playing tricks on me (PR)

4. I put two and two together because when I went to the doctors, they were dismissive because of my age group. They were paying more attention to my mum but for me they put it down to stress and said you will recover soon (PC)

5. I felt dismissed by my doctors and started feeling like I was a nuisance because I kept pestering them and they did not believe me. I felt like no one around me understood. I had support around me. My family and friends were supportive, but I still felt that they did not understand, and I felt so alone (PQ)

6. When it comes to doctors and nurses, I've got the utmost respect. They're doing a good job (PA)

Denial

7. I am also resentful that I have not had support from work. A colleague was also misbelieving my symptoms and saying that once the infection is cleared then you are fine. There are other colleagues who have had COVID, and they are fine. It is almost like, what is wrong with you, why can’t you get over it. Why are you still suffering? If it was that simple, I would get over it because I do not want to be like this. If I could go back to the last day I felt physically well and prevent the COVID, I would. If I could go back to that day, maybe avoid COVID…(PM)

8. I was feeling very depressed because I was feeling like a nobody was taking me seriously. And, yeah, my manager was like saying to me, how it's possible you are still like this? (PB)

9. Talking to others who have been through similar is also helpful. I was talking to a colleague who also had COVID. She seemed to understand, and I did not need to explain myself too much (PP)

10. My employer has not been supportive either… Yeah, it's just like they're like, oh, you are tired, but like, how can you be tired? (PE)

11. At the start it was virtually impossible to accept it and. I pushed myself far too far and far. What was the most helpful was when they finally gave me the piece of paper that said. yes, you have long COVID because it then meant I could then look at the kind of the steps that others were taking (PF)

12. I just felt like in this continual state of denial. Like, OK, you feel like you're going to get better and better, but you do know you're starting to get worse…I didn't realize that I was just pushing and pushing and pushing and this wasn't gonna get me anywhere. 'Cause nobody told me, you know, I mean, this was a few months in, but nobody knew enough about long COVID (PH)

Physical and mental impacts

13. I have been having problems with the oxygen. I am on oxygen 24/7…They (consultant) did some tests and said to me, your lungs are better than they were last time…I still cannot walk more than 20 paces (PA)

14. …I am just exhausted. I want to lie down, and I want to sleep but it is never enough…(PM)

15. Because my physical health was bad it was affecting my mental health…There is a need to think about the mental health impacts (PG)

16. My mental health is affected more than the actual physical problems (PJ)

17. I have been having depression and I have never been depressed before…(PP)

18. So basically, this long COVID has smashed my life into pieces. It's a whole mix of everything. The bad physical health means I am unable to do things, that gives me the anxiety which then effects my physical health. It all morphs into one (PF)

Living with uncertainty

Variable/unpredictable symptoms

19. I'd say you do get better, but I don't say that lightly because I appreciate that that long COVID is such a varied beast and It's multifaceted… (PI)

20. I mean there are a lot of people with long COVID who have had significant organ damage… But there are a lot of us that physically appear to be OK. but still have huge amounts of inflammation, problems with fatigue, that just doesn't seem to be able to be explained by our traditional diagnosis methods. It is important to separate the two (PD)

Frustration

21. I mean, I think if you wanted one word to actually sum up the whole long COVID experience, it is frustration…(PF)

22. I was getting frustrated the symptoms seemed to alleviate just to come back again. It was affecting my daily activities (PD)

23. It was just frustrating…You know? ‘Cause one minute I would be alright and then the next day that was it. I was extremely exhausted…absolutely exhausted. So, you know every day would be different (PR)

24. Sometimes I feel like I can fight the world and other times I feel like I haven’t got the energy to do anything (P0)

25. I just feel like I want to curl up into a ball because I can’t control when it happens (PM)

26. It feels like your body has a mind of its own and is giving you mixed signals. My partner is being supportive. Yeah, and my friends as well, but they can only do so much, but they don't really get it to the point of what's going on in your body. It must also be frustrating for them, which I understand. (PF)

27. I have a couple of friends who have been supportive. They have supported with food, shopping and bills until I got on my feet (PO)

28. Work was supportive and reduced my hours…My daughter was very helpful and supportive. It’s like the roles were reversed. It is very difficult to accept yourself that you are not the same as you used to be and not being sure if this will change. It is very frustrating (PP)

Loss of Identity/sense of purpose

29. When I was off work, I felt like I was just passing time with no purpose. Now I feel like the purpose is just my recovery that that's like the biggest purpose really (PG)

30. I am a very proud man and when I couldn’t do basic things for myself it was difficult (PA)

31. It feels like I am mourning the person I used to be. It feels like, when I had COVID, even though I did not die, a part of me did. It’s taken a part of my life with it… It’s almost like you are in a prison in your mind. Like you are there but just can’t get out. I feel like it all the time because I want to do things. I used to cook, do the shopping take care of the kids, it was all done. Now that does not happen. I would go to work take the kids out and still be ok. Now that is not possible… It does not affect just me. My children have also been affected. (PM)

32. I could not do anything or play with the children. I was feeling lonely. I was frustrated (PK)

33. It has broken me a lot and I have lost confidence…Life is for living but at the moment I feel like I am just existing. It has been like on a pause button (PJ)

34. It kind of turned my world upside down. Actually, I would say it come. Because I particularly find it hard not to work because I've been very career focused for so long (PI)

35. I felt like I had no like value in the family. And what was the point of it? You know, I had to really reassess. Like you know, what was my role in this family. I mean long COVID took all that away…(PH)

36. It was affecting my relationships with other people (PN)

37. Financially I am also affected…To be honest it is difficult to survive if I can’t work (PP)

Regaining control

Advocating for myself

38. Something inside me had a strong desire to get better. I was not getting the help, so it made me feel like I really had to advocate for myself, but like I felt good advocating for myself (PI)

39. I told myself help was not coming and I had to do it myself. I became mindful of how I was using my energy and what I was doing. I had to reduce my levels of activity and then build them up again. I realised that I could do it and things started getting better. I set small goals and when I achieved the I improved. I also stopped putting pressure on myself (PL)

Mastering the symptoms/self-management

40. I think the most helpful was the talking therapy. It was CBT and I really wanted to help myself. I was very happy with how I progressed through therapy and how it helped me (PN)

41. I guess you just sort of get an idea of the pattern. Now I have figured out that the symptoms come in waves and are cyclical (PD)

42. The symptoms are random but there is a build-up which I can feel coming on and I have had to adapt this (PL)

43. Since I have long COVID I am unable to do the things I want to do. Then there is that battle… why can’t I do it? Then the body will kick in and say, this is why you can’t do it. I am just exhausted. I want to lie down, and I want to sleep but it is never enough. This is what I have learned you cannot sleep off fatigue because it is not the same as tiredness. You can sleep off tiredness but not fatigue (PM)

44. I think I am now capable of pinpointing what I can do myself and when I need help. The symptoms are different for everyone. But I think it is really important to pinpoint the differences within yourself. I think a lot of people might not know that they are in long COVID. For example, me pinpointing that I was experiencing fatigue and noticing how it was having an impact on my life helped me realise the knock-on effect on my mental health. So, it is important to listen to your body and your mind (PN)

45. I have learnt that young people can get long COVID too. A lot of young people may experience it but not know what it is. This is because it is not spoken about, and the focus is on older people. This can lead to it being missed because they might think it’s just stress or something (PC)

46. I just didn't really understand. Kind of where it was coming from. And then I think it was at that point that I realized that you know this wasn't a normal recovery, you know. Yeah, so it wasn't going to be as straightforward a recovery as I thought it was going to be (PH)

47. I have been pushing to find the strength inside myself. I am more careful with what I eat, and I have also been taking supplements and exercising so that I can be healthier and more energised. That is my way to help myself (PB)

Moving forward

Acceptance

48. I know that things will get better. A year ago, I thought I would never get better but now I am taking it day by day. I have developed compassion for myself and accepted what is going on (PL)

49. I am a religious person and I think my faith in God has helped me. It made me feel that someone is helping me, and it helps me accept that what is meant to happen will happen and I believe that one should never give up (PP)

50. The symptoms are still there but I am a lot happier now. My body is not 100%, and I don't think I will ever be 100% but I will try and be as healthy and as fit as possible (PR)

51. Things have got better but I do often wonder if I will ever get back to what I used to be. It is taking such a long time and it does frustrate me sometimes. I have not come to terms with the long COVID yet. I would just like to get back to some of what I was like before (P0)

Re-evaluation

52. I realise that the doctors are not bad people. They are trying to help but they do not have all the answers. But it does not mean that they are bad people. Also understanding that some treatments may not work for some people. It is about finding your own way and managing your expectations. In terms of power-balance, I would come in with a different expectation (PL)

53. What I have learnt looking back now, before COVID, I thought I should never take a break from work or my routine. I almost thought that If I stopped then the world would stop. I now realise that the world does not stop if I stop, and that I need to take priorities and manage my time differently. I also need to accept myself as I am, and I am working on it (PP)

54. I no longer place so much emphasis on work MM (PI)

55. I don’t let my career define me (PH)

56. I have changed my career aspirations and I would like to prioritise my health (PL)

57. I mean, I consider myself very lucky to be alive…I try not to be hard on myself. I take each day one at a time. I used to worry about everything… I was always doing things for other people, it’s now time for me. I take my vitamin D tablet every day since the COVID. I also pamper myself a bit more like have me-time about once a week (P0)

58. From like being young. I thought I was like untouchable, and I would never get ill, so it kind of taught me that we are all vulnerable in a way or health is valuable and we shouldn't take it for granted. My partner really stepped up to the plate. It meant a lot to me and made our relationship stronger…(PI)

59. I have underestimated my own strength and I need to believe in myself a bit more (PL)

60. Perhaps I am not as tough as I thought I was… I am very angry with some of my colleagues I thought were my friends…they have not been there for me (PJ)

Re-defined sense of recovery

61. I feel like I am in a tunnel and that there will be light! When, I do not know….Hopefully, I am coming towards the end of the worst. I definitely know I am not at the beginning (PJ)

62. …It was a comparison of how my body was feeling. For example, in January I thought I was better, but the fatigue was still there. In April, I noticed that the body was not as fatigued, and I was able to do things without losing too much energy. I think after I started noticing this, my mood started getting better… It was really surprising that depression and anxiety can exist in my life. I had never gone through such a long illness in my life and experienced symptoms that I never thought ever existed. The symptoms were very extreme for me. I am happy that I now understand my body better and it has prepared me for the future if I had to go through it again, I know how to deal with it or where to go to seek help. I now also know that I can help other people if they go through the same because I know what it feels like and what recommendations I can make for them (PN)

63. Before I was tired everyday but now it happens every 2–3 days. Symptoms will come and go but I can cope… I am fine now (PK)

64. I decided to focus on what I can do not what I cannot do. I took small career steps to start getting back to normality. And since doing that, I feel so much better. ‘Cause I just feel like I'm me again. It’s good. I feel like I'm back in control… I let go of being frustrated with my doctors (PQ)

65. Right now, I am feeling better, and I do not experience the extreme symptoms of fatigue and dizziness like I was a few months ago… There is no cure right now, So I think the only way to help it a little bit is probably to build the mental strength to try and get yourself back up (PC)

66. I have been slowly getting fitter. I used to do a lot of exercise. My goal is to get back to that level of fitness. I am not 100% yet but I know I can continue to expand my energy envelope. Being able to get to that level of fitness would signify recovery… Emotionally, I guess I'm a lot more upbeat (PD)

67. Physically, I got there somehow and. I feel like I could be doing like exercise or everything again. I recovered from it, and, uh. No, I think I'm alright. I just need some professional to talk to me and just help me get through the mental side (PE)

68. I know that essentially, long COVID is this kind of ongoing experiment sort of thing, and that because everyone is approaching it differently, it will be a while before we know the full picture. And so, my brain is kind of going well. If you get better quickly, then yeah, that's excellent! But because we don't know what the full picture is you know you can't expect to know a definitive timeline kind of thing. Because I’ll be disappointed with myself if I push myself too hard or set times. No one knows. Therefore, you get better when you get better (PF)