Messages for families living 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.’

Daisy thinks it is important to remember that ‘it’s not forever’ and that ‘there will be better times.’

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.

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.

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.

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.

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.

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.

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.

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.

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.”