Messages for others affected by Long Covid

Our interviews took place 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. You can read more on other pages about how people have managed their Long Covid symptoms day to day and the messages that people had for healthcare professionals.

This page covers messages that people had for others who have Long Covid symptoms. It covers:

  • Practical advice
  • Taking care and being kind to yourself

Practical advice

One of the common pieces of advice was to rest and take time to recover. Anthony said, “take your condition seriously and if you feel you need to rest, then rest, and don’t push yourself”. Fiona A stressed that “we just need to look after ourselves really and pace ourselves and don’t feel guilty.” She recognised that this could be “really difficult” but said “we can only do what we can do”. Iain said resting was “crucial”. Sofia recommended “lots of rests and that will most definitely help”. People stressed that getting enough rest was important when someone first had Covid as well as for people who were experiencing Long Covid symptoms.

Judy thought people with Long Covid or in the recovery phase of having Covid should rest “maybe more than they think they need.”

Sarah told her friends with Covid to “please rest, rest, rest, rest otherwise you might end up like me”.

Emily’s advice to others is to “stop and take the time to understand what’s happening to you.” She said people should take time off work if they can afford to.

People realised that not everyone is in the same position. The demands of work or caring for other people in the family can make this very challenging.

Ellen, Sarah, Susan and Faatimah talked about the benefits of keeping a diary. Ben kept notes about how he was doing on his phone or in a jotter. Ellen thought “keeping a record of what’s going on is really useful” so people can “track back” their symptoms from their initial infection with Covid-19 onwards. Faatimah said without a “log” “sometimes you don’t even connect all your symptoms and stuff” and so it could be difficult to be aware of the “link between everything”. Susan thought this might be particularly important at times when people were not testing for Covid-19, otherwise it might be difficult to link new symptoms back to having Covid-19.

Susan described how keeping a record of symptoms was really helpful when talking to her GP.

Several people we spoke to stressed that it was important to reach out to others, both healthcare professionals and other people who had Long Covid, to get as much help, support and understanding as possible. When Adele was asked about her advice for others, she said “I know it’s horrible, it’s so difficult. They will feel terrible, but there are treatments that can help, so try doing a little reading around what is going on can be helpful. Speak to your GP, rest, rest, rest, don’t push yourself …and talk to people about how your are feeling”. Ben said people should not just suffer in silence – “this is such a wide-ranging condition that you will need help to recover from…this will not solve itself”.

Iain advised people “to establish contact that you want at the GP surgery” because “you need to go through your GP… and you need to make sure that they have got the accurate picture of what your concerns are”. Anthony also suggested getting the right medical help. He said “see your GP and make sure that they take it and take you seriously and either self-refer or get your GP to refer you to a Long Covid clinic” or to somebody with direct experience of Long Covid. You can read more about people’s experiences of going to the doctor in ‘Seeking help from the GP’.

Ben also had found that he needed to be “more involved than ever in your own health. You may have to be making sure that you’ve got all your prescriptions prepared, you’ve got all your appointments noted… you might have to be somebody that’s bringing ideas to the GP.” He said it had been a “combined journey” for him and “you will only get so far if you entirely lean on the GP and expect them to do all the work or the input for you”. Faatimah advised people to “keep advocating for yourself, believe yourself”. Irene said that some people might need another person to advocate for them. She said, “I would find somebody that can advocate on your behalf”. Ben also advised people get “familiar” and friendly with their local pharmacist because “you’re likely to need quite a lot of medicine, you’re likely to be needing to go there frequently”. He urged people to “understand what they can do for you and what you can do for them to make it easier”.

Another important group to think about reaching out to is other people who have experience of Long Covid. Ben has been part of a private social media group with others with Long Covid. He said it had been “hugely beneficial” to his recovery to “have that safe space, a sounding board” to “get some other ideas” and be in contact with other people in the same position (see Online and peer support for Long Covid).

Zoya said that other people with Long Covid “actually understand” what you are going through and can provide reassurance and advice.

Whilst reaching out to others was seen as being worthwhile, people we spoke to also said how important it was to “identify what works for you” (Iain). They thought it could be unhelpful to compare yourself with others. Grayson pointed out that people with Long Covid “have had a lot of common and a lot of very individual experiences”. This meant “it may be different for you from someone else and that doesn’t make it better or worse or more or less dangerous, it’s just different”. Ben encouraged people not to be “swayed by what other people say works for them, make sure this is working for you. You’re not taking on someone else’s advice against what works for you”.

Anthony pointed out that Long Covid affects different people in different ways.

Iain said that what worked for one person might not work for another because “it might be a different fuse box that’s broken.”

Faatimah commented that it was not only comparisons with other people that “could drive you crazy”, but also comparison with how people themselves were before getting Long Covid. She said: “you’re not that same person that you were and you’re also not any other person as well”. She thought it was especially hard for younger people to not compare themselves to others because “you’re at a stage of life where people are doing so many different things and you just think everyone’s better than you”.

Taking care and being kind to yourself

Several of the people we spoke to, like Adele, stressed how important it was to be kind to yourself.

One of the big messages from Ellen was to be kind to yourself and your body.

Ellen realised that this also meant being patient – “A lot of people did say to me – it’s going to take time”. Esther recommended trying to stay positive, alongside “good rest, good food and good multivitamins”.

Mary said it could take a long time to feel better but “you have to fight it and come out with confidence and having positive thoughts”. She recommended people did as much as they could to improve their immune system.

The message to believe yourself and listen to your own body was strong in what the people we spoke to said. Sofia said, “listen to your body, because people might think ‘oh it’s nothing’, but if you listen to your body, it really does help”. Ellen thought “if you don’t listen to your body it’s going to take even longer.”

Frances summarised a lot of these messages and said that it was also important to accept where you are in your illness and to try not to be too impatient about getting better.

Frances talked about being accepting, listening to your body and being kind to yourself. She also thought comparing yourself with other was unhelpful.

Online and peer support

We asked people about their experiences of looking for and receiving peer support for their symptoms of Long Covid. Peer support is given and received...

Messages for Healthcare Professionals

People who experienced Long Covid in the early years of the pandemic have often found it difficult to get the right healthcare to support them...