Recovery From Long COVID and Thoughts About the Future
The people we spoke with talked about whether their condition had stayed the same or improved over time. Some people felt they were getting better, while others believed their condition was probably not going to improve and they would have to live a different kind of life from the one they had before. Many described the challenges of living with uncertainty about the future.
Clear improvement and small victories
Although recovery was generally slow and gradual, a number of participants felt that they were definitely getting better. Nick said, “I think I’m 60 to 70% … better than I was after COVID. And the fatigue has … improved drastically, 80, 90% … It’s the shortness of breath that lingers on … but … I will get there, for sure.” Similarly, Jean explained, “When I recovered from the vertigo that was … a big boost to my morale … because I thought, ‘OK, one down you know, three or four more to go.’ … And like I was saying about the headaches, at least now it’s not like I wake up every morning and I have one. I wake up maybe twice a week and I have one. Yay, right?”
Several participants underlined the importance of recognizing positive change even when it was very subtle and occurred slowly over time. As William put it, “It’s very, very small. And that’s kind of why you have to take it one step at a time, because it is small progression to getting better.” Anna considered it “a huge success” that she had been able to decrease her dose of antihistamine. She “realise[d] that it’s just going to take … much longer than anybody would want, but with tiny, tiny, tiny steps, hopefully things will get better.”
People we spoke with also pointed out that improvement was not always steady, that there were setbacks from time to time. For example, Angela told us, “Last week, I had three pretty good days in a row … And then Friday was horrible … today’s pretty good. And … the last couple of weeks, I’ve had more good days than bad days … But it’s just such a long process.” Kristen wished she could “just wake up and feel consistently well every day … There are days when I feel really great and hopeful … and then days like today where I have a headache and body aches and I don’t feel like working and I’m tired. I’m like, “Ok, is this normal?”
Living in the present
Many participants talked about having to change the way they thought about recovery because worrying about the future made it harder for them to cope with the present. Emily tried “to focus on week to week, because if I think too far in the future … it brings me a lot of anxiety.” For William “The hardest part is the ‘what if’ … It’s ‘where will I be in the future’? … That’s the biggest struggle.”
Jennifer 1 tries to avoid playing the 'what if' game.
Transcript
So playing the ‘what if’ game never works. I do say even though I’ve like done my best to train myself, even pre-COVID to not fall into that trap it does seem to be right now happening more often. But having my psychologist to talk to helps break that cycle. […]
Ruth explains why she tries to live in the present.
Transcript
I’ve had to talk to my psychologist to help me accept where I’m at now. Because I was living in, “Well, when am I going to get back to work? When am I going to get back to myself? When am I going to be able to swim again? When […]
Violaine finds it challenging to cope with both the present and an unknown future.
Transcript
Il faut comme vivre à deux rythmes en même temps. Il faut vivre avec l’espoir qu’un jour il y aura des médicaments, qu’il y aura des découvertes majeures qui seront faites puis qu’on pourra s’en remettre puis reprendre là où on a laissé. Puis il faut en même temps, vivre […]
Accepting a new normal
Some of the people we spoke with felt that they were probably never going to fully regain their health as it was before COVID. Aislene didn’t want to get her hopes up. As she said, “I really honestly truly hope that I can get there. But I also don’t want to get my hopes too far up because … after getting anything disability wise, things never get back to the way that they used to be.” Cathy felt the same way. “I had hope but I don’t think so anymore. Because it’s two years … The breathing and these other issues and my brain fog. I feel like they’ve had two years to get better so I am very uneasy that they will not go away now.”
Maggie decided it was time to adjust her sense of herself and her expectations for the future. As she put it, “The longer this goes on, the more I recognise that I will probably be a slightly different version of my old self … I want to get back to a place where, I may be not scuba diving, but … I can drive over to my son’s or daughter’s house independently. I want to be at a place where I have enough agency that I can make decisions and act on them on my own.” Carrie 1 was holding on to a slight hope that she might recover, but she felt that since there was a “95% chance that I’ll live with this forever … I’m just going to get my life in order, because this is my new normal.”
Despite some improvement, Luna still feels like she is staring into the abyss.
Transcript
I still think of myself as sick now and I think it’s sort of clearly true that I can still suffer from symptoms and consequences from actions and this kind of thing. But it’s actually sort of hard for me to remember how miserable I was [laughs]. I can remember […]
Jennifer 2 notices that doctors no longer mention getting better.
Transcript
So yeah, so it’s been almost two years but despite the number of specialists I have seen, none of whom has ever questioned me – in fact, everybody has been very empathetic and very supportive. But yeah, they can find things, “Yes, your heart is enlarged,” you know, and this […]
Paulina feels she has to accept her new life and enjoy it as best as she can.
Transcript
I kind of lost hope because, you know, like last year, I guess, there was – there were cases of spontaneous recovery. And I’m like, oh my gosh, really? People are just, you know, about six months to a year and then all of a sudden they’re – you know, […]
Lyse's family remains optimistic but she says she would be happy with a partial recovery.
Transcript
Bien là mon conjoint ou bien ma famille… C’est sûr que eux, ils me supportent dans le fond, ils me disent : “Bien repose-toi, on espère que tu vas revenir comme avant”, c’est sûr qu’ils mettent ça positif là. Puis moi aussi, j’aimerais ça revenir comme avant. Puis je me dis […]
Katherine is not ready to accept a new normal.
Transcript
I refuse, absolutely, steadfastly refuse to be doom and gloom about this. I look at it as a challenge, one that I’m fully prepared to overcome no matter how long it takes me. I want my life back. I want to resume my normal level of activity. I want back […]
Wishes for the future
Our participants also told us about the things they most looked forward to once they had recovered further or, simply, wished they could do again. Often, these were very ordinary things. For example, Paulina said, “I just want to be able to go out with my family and enjoy the day. And come home and be happy and make dinner.” Kari is a nurse. She misses the “sense of accomplishment” and wishes she could “be around people every day and be able to help people again.” Hollie wanted “to be able to go for a long car ride … which I can’t right now because in the car I get dizzy, and I feel like I’m going to pass out.” Manali looks forward to resuming her high-energy lifestyle. She wants to put on her “superwoman t-shirt … have a Monday to Friday that’s crazy and then Saturday … throw a party after cooking for 40 people … then be raging and dive back into work.”
Many people wished they could exercise and be active outdoors because those were things that made them feel like their normal selves. For example, Nick “used to play a lot of sports” and hoped to get back to “squash” and “outdoors activities, such as biking.” Cathy wants “to play sports. I love pickleball. I love working out. I’m one of those peculiar people that likes to lift weights and likes to do cardio. This has been a part of my entire life is fitness.”
Chris has hopes of being able to travel again one day.
Transcript
One thing I certainly hope to be able to do that I don’t feel comfortable doing now is to go back to travelling … So, you know, in terms of being able to go on a little vacation with my daughter and my partner – or even travelling for work […]
Lesley would love to be able to eat normally again.
Transcript
I don’t actually think it’s possible to go back to being my old self, because I think there’s too many layers now to what’s happened, not just from the physical illness but just from the emotional rollercoaster of what we’ve gone through. Yeah, I think it is just – it […]
Cher would like to be able to sit up so she could, more easily, participate in family life.
Transcript
Right now, our goal – my husband and I’s goal, is to get me to a place where I can sit for a period of time, so that I can get a wheelchair, so that I can rejoin my family and my community. Right now, every birthday – my husband […]