The process of adaptation to living with post-COVID-19 symptoms
| Process | Representative quotations |
|---|---|
| Grieving losses | “I’m missing out on being a mom, like for my 18-month-old. I can be a mom, bits and pieces. I’ve missed out on so many activities.” (F1) “I feel life COVID … has taken the simple things in life I used to enjoy away from me … The overwhelming feeling that all of us have is that we miss our life.” (F6) “I’m stupider than crap now compared with how I used to be.” (F5) “It’s very sad and depressing when you see the life you have now compared with the life you had pre-COVID. It’s not the same.” (F1) |
| Considering the prospect of permanent disability | “Some of the questions my mom has posed to me is like trying to get me thinking about what happens if this doesn’t go away. What happens if I’m at 60% forever?” (F2) “I’m coming to that, that I’m going to be living with this. I think I have to learn to live with it. I just don’t know how.” (F3) “Basically, my symptoms have progressively gotten just very, very gradually worse the whole time, so this is 2 years on.” (F8) |
| Adapting to changes in energy and function | “I decide not to participate in a conversation. If I’m not 100% sure what’s going on, then I just don’t say anything. And that’s not like me … it’s like oh, I don’t know if I got that right so I’m not gonna say anything cause I don’t want to look stupid.” (F3) “I used to be a voracious reader. I find now that I can read, but I don’t retain it, so I read 3 pages of a book and if somebody asked me, ‘So, you know, what happened in those 3 pages,’ I couldn’t tell you, so there’s just no point in reading anymore.” (F10) “I’m just trying to live life normally right now and it’s not been easy … I’ve always been at 120% … . And I was always going and never stopped.” (F2) “When I was home, I was pacing [activities], unknowingly. But when you go into an environment where you cannot pace, and on top of it, the physical stress of not being able to pace and stop.” (F4) |
| Living with relapses | “I woke up and I thought, ‘Oh, gosh, it feels so good to feel myself, I feel pretty good.’ The little getaway, the greenery, the nice, hot sun, it was great. Well, I did a bunch of stuff around my house that I’d sort of let go, and by 3 in the afternoon, I just felt like a truck had run over me, and that’s what I have trouble dealing with, that I’ll have a day or 2 where I sort of feel like myself, and then the next day, it’s just like I — I just feel horrid.” (F8) “It cycles. You’re good for a couple of days and then I walk too far because I’m trying to get more exercise because that’s what my doctor said to do, and it sets me back for 2 days, your joints hurt, it hurts to sit, it hurts to stand up.” (F10) “First days in a month that I had not had a fever. And I actually — I was able to sweep my kitchen floor and I wiped down a bathroom, and those were huge victories for me. Then, the fourth day, first day of no cortisone and I was back to a fever of 104. And couch bound again.” (F4) |
| Maintaining personal safety | “My group is still very small. I see the same 1 friend.” (F2) “I remember my parents’ anniversary and they really wanted everybody to get together, but I was still being really cautious about being around people without masks on.” (F4) |
| Transformed identities | “I have always defined myself for working and volunteering and being there for everybody else, and now I can’t, and it’s been very hard for me.” (F6) “I feel like I’m nothing like myself that I was pre-COVID.” (F2) “I would consider myself an extrovert and I think have become so much more introverted in the process of this, you know. The thought of spending time with other people is difficult for me right now.” (F7) “It’s just been so long already that sometimes now, you just live with it. I’ve just had it for so long that now it’s just kind of me.” (F1) |
| Adopting new self-care strategies | “I know a couple of people have mentioned going vegetarian and vegan. I am not sure if I could do that, but I almost think I need to change my diet too.” (F3) “Even with my pain, I do all these things, all these exercises, all these extra things I’m supposed to do.” (F4). “Word findings, crossword puzzles, I was trying to keep my mind active and the other thing when I was really stressed, I started just listening to classical music, no other music.” (F6) “No matter how much I was trying to sleep or how much sleep I was getting in the night, I wasn’t getting a good rest, and after I think about 3 sessions of acupuncture, I finally got a good sleep and it felt like the difference between when you have a dead battery that won’t take a charge, and then having a battery that can recharge and plug it in, it was that kind of difference. I just felt recharged again and able to sense a big difference after that in my energy level.” (F10) |
| Taking charge | “I would have never thought of mast cell activation if I hadn’t gone to that [support] group and then it turned out that the doctors agreed with me.” (F5) “You put together your own team. I think that’s the only thing that works because I don’t have access to a long COVID clinic.” (F6) “I thought, ‘Okay, well, self-advocate. What can I try and do? Let’s try some acupuncture, let’s try some therapy, the naturopath,’ and I think there’s been some good results at that, but taking 40–50 different supplements a day — I can’t stomach taking all these pills.” (F10) “She was a young emergency doctor filling in to do this assessment. Took 5 minutes and didn’t — hadn’t even read my chart, didn’t look at my echo result. Was just like, ‘I think antidepressants are the answer.’ … I was like, ‘You absolutely are incorrect and this isn’t a depression. You know, I’ve monitored my heart rate, monitored my oxygen. And it’s almost like POTS-like symptoms. I’m like, I’m not making it up in my head.’” (F1) “[Participant asked] ‘Should I do anymore tests or is there anything I can do?’ [Physician said] ‘No, just rest. Keep on doing what you’re doing.’ I’m going to put my foot down on Friday and try to get more answers, but I’m still at the beck and call of the health system.” (F9) |
| Acceptance of a new normal | “For me, it’s not over yet. I don’t know when it is going to be. It’s getting better, but it’s not over yet. It may never be over.” (F7) “If this is my new me, I’m learning to live with it … I can’t do much physically and I can’t do much cognitively … coming to understand that right now, this is my normal.” (F1) “How you feel about yourself [is different]. Your energy levels, all of those kinds of things. It’s a different normal than anything that you ever had to deal with before … but you have to start accepting this is what you’re going to be living with.” (F2) |
| Finding hope in milestones | “I suspect that [my energy] just isn’t going to come back at this point, because it’s been this long, but I’ll keep working on it. I will, I’m going to just keep pushing because I mean, there has been, you know, very tiny, baby step kinds of improvements all the way along.” (F7) “A lot of the people said that once you’re able to do your regular activities, so if you can get up, get your son to school, make lunch, have supper, do the bedtime routine, once you can do your normal activities at home, that’s the standard of when you can try adding on more.” (F8) “I was happy at 5 months when I started eating again, got my appetite back.” (F5) “Because I sing … I’m in a band. I find singing, interestingly, a very great exercise for working on gaining back some lung capacity because you really, really have to work on sucking a lot of air in when you’re singing all the time … so that’s kind of a bonus. I didn’t realize that it would make that kind of difference.” (F9) |
| Optimism | “You just have to have faith that you’re going to get better.” (F6) “I’m trying to remain positive, trying to hang in there.” (F2) |
| Finding gratitude | “There are so many things to be grateful for, honestly. All the little things I kind of celebrate. Some of the brain fog has lessened, and compared with where I was, say a year ago, there’s huge improvements … I feel like I shouldn’t complain because I lived when I didn’t think I would live.” (F6) |
Note: POTS = postural tachycardia syndrome.