Recovery and considering the future after Long Covid

When young people and parents talked to us about the future, they raised different worries and hopes. They also shared strategies for living with the uncertainty of the future. On this page we cover:

  • Difficulties planning for the future
  • Uncertainty and optimism about long-term health and recovery
  • Worries about missing out on education and falling behind

You can read more about what adults with Long Covid thought about the future and their chances of recovery here.

Difficulties planning for the future

People talked about their hopes for their, or their child’s, recovery. Some worried a lot when they thought about the future and felt unsure about when or even whether they would get better.

Charlotte described “lots of worries” – whether she would get better, and the impact of her illness on her family life and her job.

Danie, whose child had Long Covid, told us “It feels like we can’t really plan that far ahead, because we’ve got the appointments in place, but we don’t know what’s going to happen in-between those appointments and what they’re going to say.” Not knowing how symptoms might progress made it difficult to plan for the future. When we interviewed Felix, he was feeling “pretty terrible” about the future. He had “no idea” what was going to happen next. Sonal, a parent, 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.”

Michelle worried about whether her child would be able to go back to school and how Covid would carry on affecting people in the future.

This was particularly difficult for young people in their 20s or early 30s who felt a huge loss of independence and disruption to life plans.

Hannah, a young woman in her 20s, wanted her old life back but she worried that she could not manage her anxiety symptoms if she moved away from her parents.

A specific concern that Sara had was about whether she could plan to have another child. Lachlan also felt that expanding their family at this time was out of the question.

Sara’s decisions about whether to have another baby were affected by her worries about Long Covid symptoms and medication and how her body would cope with a pregnancy.

One strategy that some people used to help live with uncertainty was to focus on everyday routines and the immediate future. Helen 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. Razia said, “it’s a day at a time…I think I live on hope.” Michelle said Covid had “literally rocked our world – it’s been probably the hardest time of my life ever.” It was difficult to make long-term plans whilst wondering if she would get better.

Lucy B 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.

Uncertainty and optimism about long term recovery and health

Parents described the challenges of worrying about their children, particularly the uncertainty about when, or whether, their child would recover from Long Covid. Deirdre, whose daughter had Long Covid, wanted people to understand the reality of Long Covid and that “there are lots of children that are suffering.” She said, “All I want to know is ‘Is there going to be an end to it?’ I just hope someone can research enough to find out whether she will get better.” Lindsey wasn’t ready to accept that her partner’s and son’s health problems may be permanent. Emma A had “no idea” when her daughter, who had not walked for 11 weeks, would walk again.

Catherine said there were so many uncertainties about her son’s illness and future. She has found it helpful to accept that the situation won’t resolve quickly.

Some parents had begun to see signs of recovery. Emma B saw some small improvement in her daughter Freya’s health but was disheartened when she “crashed” again after going back to school. She said even any small improvement “is a big gain” but “you feel like you’re plateauing a bit…you convince yourself a bit she’s cured, she seems loads better and then she goes to school once and it’s like ‘Boom!’ It’s like starting all over again.”

Evie, Jasmine, and Gracie were all teenagers with Long Covid. Evie told us, “It’s difficult to look into the future because I don’t know if things are going to get better. I do have hope that it will get better, it’s just I don’t know how soon.” Jasmine had been frustrated when her symptoms flared up after she got Covid again. This was after she had “just started to feel she was getting better.” Gracie and her mum had seen some improvement in Gracie’s health. When she was first ill, she could only crawl upstairs whereas now she could walk up. But they both felt like she’d “kind of plateaued.”

Gracie and her mum found it hard to think how she had been before she was ill. Gracie’s mum said, “every day’s like Groundhog Day.”

Others had begun to see more concrete signs of improvement. Sasha described being “very relieved,” “really, really pleased,” and “absolutely thrilled” as she began to see signs of her daughter recovering.

Sasha’s daughter was gaining strength and seeing friends again.

Although it will still take a long time, Lucy A and her mum now feel she’s on the road to recovery. She’s able to see friends again. Several things had helped her “in their own little ways.”

Sasha’s daughter was gaining strength and seeing friends again.

Amal was also feeling optimistic about recovering and said, “I definitely feel like it will go away. I’m thinking hopefully in a couple of months maybe. Let’s just hope because it is getting better. Like it’s there, but it’s barely there. Do you get what I mean?”

Callum, a young person in his early 30s who had had to move back home with his parents, has had an ‘up and down relationship’ with his sense of hope.

Callum is focused on improving his quality of life rather than pinning his hopes on a complete recovery.

Worries about missing out on education and falling behind

A specific worry that some teenagers and their parents talked about was the impact of having Long Covid on their education. Amira said to us, “I feel scared like it’s never going to get better.” She was worried that if she didn’t get better, she wouldn’t be able to do her exams. Colin talked about how challenging it was for his daughter to have any continuity at school. Rosie worried about missing her exams and falling behind, and Ben and Lucy were keen to get back to school.

Colin is trying to support his daughter to manage some lessons at school and do the subjects which are more achievable at the moment.

Abigail, who loved P.E., told us “Once I’m eventually fully recovered from Covid, I am going to go out there and do all the exercises in the world because I haven’t been able to move for so long… I’m just going to do all the sports in the world because I need my life back.”

Michael doesn’t look as far into the future anymore but hopes to be able to complete his medical training.

Michael told us he’d “learned an awful lot” from having Long Covid which would affect how he would treat patients in future, recognising the importance of “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.”