Family experiences of Long Covid
Messages for others with Long Covid
In this section we share advice from young people and parents we spoke with about living through Long Covid and staying positive. The main message that people shared was that it was important to maintain hope and be patient through the good days and the bad days. There was a balance to be found between setting personal goals and pacing yourself through recovery. The advice that people gave includes:
Messages for young people with Long Covid
- Be optimistic despite uncertainty
- Be patient with recovery
- Get support from others
- Learn about your body and Long Covid
- Make a plan about school
Messages for parents of young people with Long Covid
- Connect with others
- Don’t give up
- Other advice
To hear more messages to others with Long Covid, see Long Covid in Adults Messages to Others with Long Covid.
Messages for young people with Long Covid
Be optimistic despite uncertainty
Key advice from young people with Long Covid:
- Stay positive
- Try not to worry
- Focus on what will keep you motivated
- Don’t give up
Long Covid is a new illness, and there any many things about the condition that remain unknown. People we spoke to offered a range of advice about how to remain optimistic in the face of uncertainty.
Some young people, like Daisy and Amira, advised that others should be optimistic and think about a time in the future when we know more about Long Covid. Daisy said, ‘Think about the future and don’t dwell on the now.’ Amira found it useful ‘staying positive and knowing it will get better soon.’
Other people, like Ben, preferred to focus on everyday activities because of the uncertainty of the future. Hannah recognised that she didn’t know what was going to happen, but she thought it was important not to give up and to keep looking for solutions.
Ben advised that people ‘try not to worry’ because there isn’t a ‘clear path’ yet. There will be good days and bad days.
Ben advised that people ‘try not to worry’ because there isn’t a ‘clear path’ yet. There will be good days and bad days.
I think try not to worry I guess because...well, try not to think about the future as much as you do because you haven't really got the clear path, whether you might think you're going to get better, but if you try and...I think, say to yourself, I’m going to get better, I can do—on a good day I can do a lot, you can’t really push yourself, just try and find a boundary where you can do stuff like going for a walk but you're not pushing yourself so much that you are going to go on the…you're going to be crashing from day-to-day, you're going to be having a good day and a bad day, and a good day and a bad day, or you have bad days in a row. You’ve got to just have a routine really where you're not pushing yourself too much and you're taking it slower, and just try not to worry about stuff. You need to make sure you've got your support network really as well, so you've got people supporting you and you've got a clear plan for school, I guess, because sometimes they might not be as helpful as mine have been. They might be trying to push you in, you can’t let...you can’t listen to the school if they’re telling you to come in for attendance, you've just got to do what you can for school, do what you can for exercise, just don’t push yourself so you're falling off a cliff really.
Hannah said, ‘don’t give up’ and ‘just keep trying’ to find solutions.
Hannah said, ‘don’t give up’ and ‘just keep trying’ to find solutions.
I wouldn't want to say, ‘It’s all going to be OK,’ because I don't know, and I worry about myself. I think I'd say to a...I don't know, just like, don't give up, like just keep trying and keep like pushing until you find a solution that helps you, like don't...like I don't want to do the thing where eventually I give up and I go, ‘Ahh, I can't be bothered anymore,’ that I'll just live with it, no because I think it has changed so many people’s lives and that would be really sad if it was to change someone’s life forever. So I would also say educate yourself on it, because even though it’s annoying, that I feel like I know a lot, it’s also helped in the way that I get...at least I really understand what’s going on in my body and I think a lot of people are able to like...it’s just the doing the reading, I'd say also read about it yourself so you're not just being told it and then maybe forgetting it.
Hina advised ‘encourage yourself’ and to find support in your family.
Hina advised ‘encourage yourself’ and to find support in your family.
I would say like what people said to me – water, have fruits, exercise, stretch out, always push yourself, encourage yourself, yeah you can do it, make sure your families encourage you, yeah.
Be patient with recovery
Key advice from young people with Long Covid:
- There will be good days and bad days
- Pace yourself
- Have a routine
- Understand your limits
- Don’t push yourself too hard
- Have goals to focus on
- Stay hopeful
People we spoke to were in different stages of Long Covid. Some were living with symptoms that made day-to-day life difficult, and some felt they were on a path towards feeling better. Lucy A talked about the importance of being patient with recovery. She said that good days might be followed by bad days. She accepted that recovery might take a while, but slow progress was sometimes hard for her. She remained hopeful that she will get better.
Lucy A advised that other young people be ‘very patient’ with their recovery and encouraged them not to lose hope.
Lucy A advised that other young people be ‘very patient’ with their recovery and encouraged them not to lose hope.
Lucy: It took a while for me to actually I guess in, acknowledge my progress because I used to do it a lot if I made the slightly difference. And then it would knock me down a lot deeper when it wasn’t actually progress and it was more on just a good day. So, like, don’t get too caught up in if you have a really good day because there’ll be like really low dips. But also, don’t lose all of that hope. Because—
Mum: You have to be patient. It’s gonna take time.
Lucy: Just be very patient because it’s been a year and a half and I never thought it would, I thought it would be over in like two weeks or something. I didn't think it would take this long but it has. But it’s getting better now, so, yeah.
Lots of people, like Ben, talked about respecting the boundaries of your energy and not ‘pushing yourself so much’ that you are going to be ‘crashing from day-to-day.’ Harry and Jasmine advised ‘gradually increasing what you do.’
Jasmine advised people to pace themselves, and not do too much all at once. She thought it was important to connect with other people learning about Long Covid.
Jasmine advised people to pace themselves, and not do too much all at once. She thought it was important to connect with other people learning about Long Covid.
Yeah, I don’t know about speeding up recovery I’m just trying to work that out myself. But I think just, I find don’t, don’t push it, just try and try and manage your energy because I find that if I do too much or try and do too much all at once, I just yeah, the next few days, I’m just so tired. I try and take it, like pace myself and not do too much all at once and stuff. And I think more that, now that these, there’s studies coming out and Long Covid kids and I think this will help people, hopefully that are feeling the same just to like research, but also know that they’re not on their own, there are other people. I find it hard feeling like I was the only person not knowing. And now that now that there’s more known about Long Covid. I mean, they’re always finding out new things.
While people we spoke to advised being mindful of the limit of your energy while you recover, some people, like Daisy, thought it was also useful to have personal goals that could keep you motivated. Hina said, ‘Encourage yourself, say “yeah, you can do it.”’
Get support from others
Key advice from young people with Long Covid:
- Connect with other people in the same situation
- Get support from family
- Find helpful medical professionals
People we spoke to said it was important to connect with other people experiencing Long Covid. It was useful to share and learn from how different people were living through the condition. Jasmine spoke about how it helped to share feelings about having a condition that we are still learning about. She said it was useful to know ‘there are other people’ in the same position.
Having support from family was important as well. Hina advised other young people to ‘Make sure your families encourage you.’ In addition to family, some people we spoke to encouraged other young people to find the right support from health care professionals. Abigail thought it was useful to learn with doctors who are also interested in Long Covid. Michael said the most important thing was finding a doctor who believes you. Callum thought ‘it was always worth speaking to the doctor’ if you are worried.
Learn about your body and Long Covid
Key advice from young people with Long Covid:
- Educate yourself about your body
- Learn about Long Covid
- Find out about new research
Learning about how Long Covid affects the body was helpful for some people, like Callum and Hannah. Callum said, ‘The thing that has most helped me is being able to learn enough about my new body and how it functions, so that I don’t feel like I am making it worse.’ Jasmine found learning about Long Covid research helpful, because ‘They’re always finding out new things.’
Callum says that it’s worth getting things checked with health professionals if something doesn’t feel right.
Callum says that it’s worth getting things checked with health professionals if something doesn’t feel right.
So, I would say that for, for other people, I would say that… I think that the thing that has most helped me is being able to learn enough about my new body and how it functions that I don’t feel like I am making it worse. And the way that I have done that through self-management, through speaking to people who’ve got lots of experience before has meant that it is a lot of the quality of life in me and also meant that my rest time is more meaningful. And I’m not just doing things for the sake of it. I know the reason why and that is possible to get to that stage. It is possible to get to that stage with your body. It takes guidance. It takes support and it takes a lot of hard work. But it, it, I have found that I have gained a lot of quality of life from this in a way that my recovery hasn’t been able to provide and for people who’ve, you know, if, if something feels wrong in your body it is always worth pursuing. It is always worth speaking to the doctor. It’s always worth pressing for investigations, even if they come back with nothing. You know, it’s much better to check. It’s always much better to find out these things, rather than kind of submitting to the culture of, ‘Oh well, you’ll be okay.’ I’ve got friends who, upon investigations, things have been found. And had they just waved it away as, it’s just Long Covid. Nothing to worry about. They could be in a much worse spot now. So, you know, those, those would be the, the two things specifically I would say is, you know, the journey of becoming more aware of your body and learning how to deal with your condition and not submitting entirely to it, a culture of ‘Oh well, you’ll be fine. Just wait it out.’
Make a plan about school
Key advice from young people with Long Covid:
- Do what you can
- Make adjustments
- Take things slowly
- Maintain ongoing communication with school
- Focus on specific goals
- Balance your education with your health
Having Long Covid disrupted education for lots of people we spoke to. Ben and Harry said it was useful to have a plan to discuss with teachers for how to manage school. Daisy thought it was helpful to focus on specific goals, like GCSEs. Others, like Michael, thought it was okay to take things slowly and said, ‘There’s time for education, it’s not just rushed.’ Harry was reluctant to reduce his school hours, but also wanted to focus on his recovery.
Michael said, ‘education doesn’t expire’ and that it is important to focus on your health.
Michael said, ‘education doesn’t expire’ and that it is important to focus on your health.
I think that in terms of like education, there’s no rush. You can always be educated later. You know, education doesn't expire at sixteen. So, I’d say like, focus on your health, you know, try and stay as happy as you possibly can despite the adverse circumstance because all of that, you know, that can be really challenging.
Message for parents of young people with Long Covid
Connect with other people
Key advice from parents of children with Long Covid:
- Reach out to other people in the same situation
- Use social media as a source of support
- Share expertise
- Find people who know about post-viral illness
- Work as a team
Lots of people we spoke to, like Sasha, recommended reaching out to other parents of young people with Long Covid. Emma A said that having a child with Long Covid is ‘like being a parent for the first time’ because the situation is so new. She felt that talking to other parents is important for sharing expertise about how to support young people with Long Covid. Facebook groups were considered a good starting place. Emma B said ‘100% you’ll get help and support there.’ Sharifa thought that teamwork with loved ones was helpful, and that it was important to be with people who will say ‘a few kind words’ and build your confidence.
Some people advised trying to connect with experts who understand post-viral illness. Sasha recommended reaching out to people on social media. She said there were a lot of experts on Facebook and Twitter giving their time for free to support families affected by Long Covid. Emma B encouraged parents not to be scared to ask for help, and to ‘seek the support that you think you need for your child.’
Don’t give up
Key advice from parents of children with Long Covid:
- Remember that you are not alone
- Trust that you understand what support your child needs
- Be persistent in seeking help
- Try different methods
A key message from the people we spoke with was that it was important to maintain hope and keep going, even when it was hard. Beth advised others not to give up on the fight to get heard. Trusting yourself was another important message. Emma emphasised that parents often understand what might help their children, because ‘nobody knows your child better than you,’ and Beth said to ‘trust your gut instincts.’
Beth wanted other parents to know that they are not alone, and they shouldn’t give up fighting for what they believe in.
Beth wanted other parents to know that they are not alone, and they shouldn’t give up fighting for what they believe in.
That you're not alone. That you should never give up fighting for what you believe in. You know what’s...you know your child, and you should trust your gut instincts. Usually a mother’s gut instinct is right [chuckles]. And yeah, not...just not to give up on the fight I guess to get heard.
Other advice
- Share information with schools about Long Covid
- Keep a diary
- Raise awareness of Long Covid with government representatives
- Focus on what is really important to you
- Look after your own health
- If you are religious, use spirituality as a source of support
Some people we spoke to offered other specific advice.
Sasha suggested sharing useful websites and Facebook groups with schools, so they can get specific advice about how to support students with Long Covid. She also found it useful to keep a diary, as this helped in monitoring change. She recommended talking to local government representatives about the Long Covid to raise awareness.
Sasha advised people to ‘contact your MP’ as a way to raise awareness of the number of young people with Long Covid and initiate change.
Sasha advised people to ‘contact your MP’ as a way to raise awareness of the number of young people with Long Covid and initiate change.
And apply pressure to the Government, definitely contact your MP, try and initiate change, I think if we don’t tell them how many children are being affected they’ll, they won’t know, if you just stay on Facebook I think you would never know I think probably it is useful to go to the newspapers.
Christian, who had Long Covid himself, thought it was important to ‘strip back your life to the essentials’ and to focus on what was really important, which is his case was working less so he could spend more time with his wife and daughter. This had to be ‘realistic’ in terms of having enough income, but he decided ‘time is more valuable to me [than money] to spend with my family.’ See more information about adults with Long Covid.
Christian said you had to prioritise what was most important to you, which in his case was quality time with his family.
Christian said you had to prioritise what was most important to you, which in his case was quality time with his family.
My advice would be try and manage your life in a way that you strip away all non-essentials, whether that means social interactions or type of work activities. You know, you've really got to work out what is most important to you and how to prioritise that. For me, that was being able to spend quality time with my wife and daughter because I can’t do that, but that’s meant that my professional life has had to suffer. You know, I used to have a career; now I’d say I have a job. It’s a good job, but it’s not a career, and that was a sacrifice I’m willing to make [laughs]. Similarly, you know, less pay, quality of life, that sort of thing. But time is more valuable to me to spend with my family. But that’s…you've got to decide for yourself and try and make it work, right, within what’s realistic, i.e., in terms of what you can do and still survive. So, no easy fix.
Sharifa found that religion and spirituality was helpful in supporting her and her family. She encouraged other parents to ‘hold on to prayers’ and ‘listen to lectures.’ Sharifa also emphasised that it is important to take care of your own health – “Don't give up, keep on going, try other things, methods, if one’s not working try a different method, if that’s not working, but never give up.”
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