When we spoke to people about Long Covid, most had been ill for many months – sometimes for over a year. Our interviews took place between April 2021 and July 2022, when Long Covid was a relatively new condition and little was known about how long it might take to recover, or even whether everyone would fully recover. In the interviews people talked about whether they were on the road to recovery and about their worries in the short term and in the longer term. They also talked about their thoughts and hopes for the future and whether they would be able to get back to living their lives as they had done before they got Covid-19.
This page covers:
- Ongoing worries
- Uncertainty about recovery and the future
- Symptoms over time
- Signs of improvement and recovering
Felix worried because his parents didn’t know whether he would get well enough to work again and whether they would have to continue to take care of him in the future after they had planned to retire. Hannah said, “I just worry that it’s never going to get better.” This was one of Charlotte’s many worries too.
Uncertainty about recovery and the future
The people we interviewed talked about their hopes for recovery, but many voiced uncertainties about whether they would ever get better or if their health would get worse. Some people we spoke to worried a lot when they thought about what might happen in the future. Vonnie felt there was “no end to this. We can’t say I’m going to be better in six months’ time. I didn’t realise Long Covid meant that.” For Lyn, thinking about the future was like “walking on thin ice and not knowing which part might break.” When we interviewed Felix, he was feeling “pretty terrible” about the future. He said, “I have no idea how my future will be. Maybe it [Long Covid] will go away eventually, I don’t know.” Sonal 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.” Fiona B tried to “think positive” and had “good pockets” when some of her symptoms improved, but she didn’t know “what the end game is” or “how long that rollercoaster’s going to go on for.”
Xanthe was sometimes “completely terrified” when she thought about the future. She talked about how Long Covid affected young and older people in different ways.
One strategy that some people used to deal with living with uncertainty about the future was to focus on everyday routines and the immediate future. Helen X 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. Julia said Covid had “literally rocked our world – it’s been probably the hardest time of my life ever.” It was hard to make long-term plans whilst wondering if she would get better.
Lucy 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.
Christian tried not to think about the future because he didn’t know how hopeful to be about getting better.
Michelle’s hopes and dreams were “pretty much shattered” because of how Long Covid has affected her and her son. She could no longer “plan years in advance”.
Michael also said, “I don’t really look too far in the future anymore…as I would’ve done.” One of his hopes for the future was that he would become well enough to finish his medical degree. He told us he’d “learned an awful lot” from having Long Covid which would affect how he would treat patients in future. He said this would involve “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.”
Symptoms over time
People we spoke with had different experiences of their symptoms changing over time.
Penny accepted people had different responses to their Long Covid symptoms. She felt she just had to “ride the storm”.
Some people said their symptoms had stayed the same. When we interviewed Robert, he had been living with changes to his sense of taste and smell for over a year without any significant signs of getting back to normal. Although Faatimah felt that her symptoms hadn’t changed over two years, she said she did have a “different understanding and way of managing it.”
Robert had not experienced any significant improvement to his sense of taste and smell. He finds it difficult to deal with the uncertainty of whether his sense of smell and taste will return to normal.
Some people felt they had improved to a degree but then their recovery had levelled off. Fiona A felt like she had “definitely” recovered but had “hit a plateau.” She said she was “definitely a lot better than I was but probably in the last three, four months I just seem to have got stuck.” She wondered whether she was now “as good as I’m going to get.” Ellen said her illness felt like “a long haul.” Keeping a diary had helped her to see “how fluctuating a disease or illness this is…it just doesn’t’ follow a pattern, and you just think you’re going mad. Absolutely mad.”
Sarah kept symptom diary to track her “up and down journey.” She had felt hopeful over the summer, but recently thought that she wasn’t improving.
Some people were still feeling very unwell when we spoke with them. Jennifer said she felt worse at the time of her interview than she did when she first became unwell with Covid-19 more than a year earlier. Anthony didn’t feel that he was in a “recovery phase or a recuperation phase,” even though he had been ill for a long time. He felt “in a different state now, which has not got any better…it’s as bad as it’s ever been, now, for nearly two years.” Mahabuba had a chronic health condition before she had Covid-19, but since having Long Covid she has been in more pain and has less interest in life.
Mahabuba continues to be in more pain than before getting Long Covid and has less interest in her life.
Signs of improvement – the beginning of recovery
Amongst the people we talked to, there were some who were seeing signs of improvement. Hazeem felt optimistic about the future. He said he knew he wouldn’t “be living like this forever or that long” and his faith helped him to be positive. He thought “there is a bigger plan that God had made so, you know, we never know what’s going to happen, but we should always think positive.” He felt “sure” there would be a cure for Long Covid in the future. When Paul looked forward, he was trying to see having Long Covid as “an opportunity to sort of re-evaluate” who he was, what he could contribute, and “issues of identity” in relation to his work, his family, and wider society. He said “and that’s quite scary because in a way the rug’s pulled from under your feet, everything that you thought was true, you know, those things aren’t necessarily any longer the case. But it’s trying to see it as an opportunity as well.”
However, getting better was not usually a steady and predictable process. Zoya was “slowly kind of recovering” but said “it seems like it’s a cycle, an ongoing cycle.” Sophie felt like she was getting better generally, but the severity of her symptoms could still vary. She said “still it’s not like you get better and then you keep getting better. You go back and you have some really bad days, and you think, oh, you’re not improving, and then you get a wee bit better.” Jennifer described her progress as slow and fragile. Adele said she was feeling better than she had done but was “not completely out of the woods.”
Many others described the ups and downs in their journey to recovery.
Six months after contracting Covid-19, Penny said she was “definitely better”. She could “juggle work and the kids” but sometimes she was still “tired out”.
Some of Fiona B’s symptoms had mostly improved. Her sense of taste and smell was beginning to come back but duller and she was glad she hadn’t had phantom smells.
Ben described himself as 30-40% of the way to being better.
Tom’s fatigue is not triggered as much as it used to be by physical exercise but is still triggered by mental effort.
Although Helen still had some symptoms that she could “deal with,” she felt “I’m definitely better. I definitely feel like I did before.” She described her improvement as being “quite sudden [and] you don’t realise how bad you felt until you’re better.” June, Irene, Laurie and Ada also described positive signs of recovery. June felt “95% recovered.” She just needed to watch herself because her “old me” had a tendency to “do loads of stuff because you feel energetic” which could lead to a “mini burn out.” Irene said she “felt more like me.” Laurie felt a “gear change” after having her first vaccine. She said, “Suddenly I thought ‘Oh hang on.’ It was like the sun had come out, like the cloud had gone from my brain and I suddenly felt like myself again.”
Ada described one day when she felt “I’m back, I know who I am.” She has been able to go to Friday prayer, one of the things she really valued.
Lyn made a video once a month to document her Long Covid journey which she hoped would help others with Long Covid and make them feel less alone. Like Lyn, Kate felt that it helped to accept that Long Covid was not “gonna go quickly.”
For Lyn, acceptance and taking things as slow as possible were important keys to her recovery.
Kate was feeling more optimistic about getting better but still had “blips” and “horrible relapses.”
Even when people felt optimistic about getting better, they still had the uncertainty about when they would “be themselves” again. When asked if she was optimistic about recovering Poppy said “Absolutely. Yeah. Just got no idea how long.” Frances was one of the few people we spoke to who said she felt fully recovered and back to being able to do what she normally would do.