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.”

View profile

One of the things that we always ask people is whether you have any sort of messages for other people who are experiencing Long Covid? Sort of based on your own experiences.
 
I was thinking about that earlier and I’m not sure that I do because it’s not like I’ve worked out some way to magically defeat it and become well. I suppose if there was somebody who was just beginning to have Long Covid or they thought they might have it or they were in the recovery phase of having Covid itself then probably to rest as much as possible, maybe more than they think they need. And from my point of view, I probably should have rested, just taken time off work much earlier but I didn’t realise that was something that I needed to do, and I don’t know whether it would have made a difference at the time, but it would have been so hard to do in my daily life if I had probably [laughs]. So that’s probably the main thing.

 

Embed Print Transcript

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

What about messages for other people affected by the condition? What would be your main advice?
 
Yeah, so I’ve actually had a few friends that have had Covid quite recently in the next… the last couple of months in this latest sort of spike as it were, and like ladies maybe similar to me and have just, I just keep texting to them saying, please rest, rest, rest, rest [laughingly].
 
And when you think you’re ready to go back to work don’t go back. When you think you’re ready to go for a run don’t go for a run. I don’t know. And, you know, I do say, otherwise you might end up like me. But I don’t know whether that is why I ended up like this or not. But so yeah, just to…I mean, people said to me at the time, just, just take your time and, you know, but it’s you don’t always listen to it, do you? You think you know best. You think you’re ready to start again. So yeah, just really, really taking it slowly.
 
And then just in terms of managing it I don’t know, I suppose, I suppose I would say about, you know, becoming part of some of the support groups and things like that and finding people that you are able to talk to and be honest with and, you know. Some, some of the things I’ve done like, you know, keeping a diary and things like that that I feel are useful I guess I would share some of the things.
 

 

Embed Print Transcript

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.

So, what would you say your main messages are for others who are affected by the condition?
 
Stop and take the time to understand what’s happening to you. I think the acceptance that, actually, this is just how things are, is really important and it’s not, you don’t want to have to accept it, but until you do, you’re not going to understand what’s happening to you. So just really, yeah, stopping. Take the time and if you’re, I mean, if you’re able to afford it. That’s the big problem. I’m lucky I’m in full-time employment with sick pay and I’ve been there long enough that I’ve had, you know, I know I still have a buffer as well, even though I’ve had three months and, obviously, being a teacher, I’ve just had the last six, you know, I’ve got a big chunk of time now, the way things have worked. So, if you can afford to stop and get your head round what’s happening, then do that.

 

Embed Print Transcript

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.

So based on your experiences, do you have any messages for others affected by the condition?
 
I think if it’s starting to go on, I think keeping a record of what’s going on is really useful. And keep having conversations with your GP. And that’s quite hard, because it’s hard to get appointments. But I think being quite firm that you need an appointment and talking it through with them. Because it’s vital really that they can track back your symptoms to your Covid infection. Because they have to rule everything out before they can say oh, it’s Long Covid that you’ve got.
 
So, I think that was really useful that because I had a conversation with my GP about whether something like HRT would help because there’s been a little bit of research on that helping some women sort of my age. And he was saying that that wasn’t really relevant to me because you could track back all my problems to that initial infection. So, and I think, you know, it’s going to be difficult for people when people aren’t testing. And they might not even realise they’ve had Covid, and I think that’s going to be very difficult, moving forward in the future. So, I think, you know, if you think you have, just keeping a note of it really and that bank of evidence and knowledge. And there’s lots of different things to try and I think different things help different people. So, I think it’s, you know, you have to be proactive yourself of finding out information and trying stuff. Some people have found antihistamines help, you know, things like that. Because everybody’s learning. The medical profession are still learning so much about it, so they don’t have the answers.
 

 

Embed Print Transcript

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.

Do you have any advice for people, or anything based on your experience that you think would be helpful for somebody with Long Covid, or maybe somebody earlier on in their experience to hear?
 
I would say it would be very helpful to…you know, if they could reach out to support groups where there are people, others that are experiencing the same thing. I feel like just talking to people and getting to know , you know, that there are other people that are experiencing similar things to yourself is actually very helpful in a lot of ways it just makes you feel like, you know, you’re talking to people that actually understand where you’re coming from because right now I think people that haven’t experienced Long Covid and haven’t had Covid even they just don’t understand, they just think, “Oh, you know, you’re just [pause] blowing it out of proportion or you’re just overreacting or you’re just lazy”.
 
But really, it’s just…it’s something that you… the fact that it’s such a…it’s so physically …it impacts you physically to the point that where you can’t even do things when you want to, it’s only something that you…people understand when they actually experience it themselves. So, it’s helpful to talk to people just that actually understand because I just think it…it just makes you…it makes you feel a lot, you know, more seen and like, you know, it’s okay to be going through what’s happening and I guess it’s also…it would also be helpful to be able to share things on how you can help yourself recover.
 

 

Embed Print Transcript

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.

And another point is that it is very variable, and that, you know, it will affect people, different people in different ways. So, because, you know, one person experiences a particular set of symptoms, yours might be somewhat different. But I think the common factor seems to be the tiredness, the fatigue, the malaise, that you feel on any sort of physical or mental exertion. And, and then the things that may or may not affect people are the sort of breathing difficulties, some people have really bad breathing difficulties. And, quite clearly, a whole load of different symptoms, and perhaps internal issues, as well. And the other advice I would say is, just make sure that your family and friends understand how you feel, and, and your colleagues at, you know, people that you work with, and for, understand, too. And you know, just make sure they understand what’s going on.

 

Embed Print Transcript

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

So, I don’t think that you can, you know… what helps somebody else might not help you. You know, other people swear by paracetamol and ibuprofen, and that’s fine, if it helps them, it helps them. But, you know, you need to…you need to find your own way. And I don’t think…you know, absolutely don’t rule anything out. You know, absolutely don’t. You know, it could be a change in diet. It could…it could be, you know, change in…lack of…because I…I think, you know, because…you know, the way I described the fuse box inside me…
 
I think…somebody else, it might be a different fuse box that’s broken. You know, so what necessarily works for me on a different system that’s blocked or clogged or whatever, right. So, I think the answer is just…you know, I think if it…if it looks reasonable, you know, so try paracetamol, if it works, it works, you know. Try Deep Heat. If it works, it works. You know, try…you know, because we could all say we could eat more vegetables, eat less meat, you know, drink more.

 

Embed Print Transcript

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.

But unfortunately, it is time is the biggie, and it’s being kind to yourself and kind to your body, and listening to your body, and not to feel guilty, because I did try, I did try to work through, because I’m just that sort of person, I’m old school, and I had to give in. So, I think if people…yeah, are thinking they’re heading that way, because it’s really hard, because Long Covid label doesn’t kick in ‘til a certain time, and I didn’t think I was going to get to that time. But I did, but I think it’s just…it’s just listen to your body, and if you are knackered and don’t feel like doing anything, don’t feel guilty.

You just have to…you just have to go with it. It’s still going to take time to recover, but if you…if you don’t listen to your body, it’s going to take even longer.

Embed Print Transcript

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.

What messages would you want to give to other people with Long Covid?
 
People who are getting Covid: first, they need to really, really have a very good strong mindedness, and just believe and trust, eat well and try to gain immunity in the body first. When your immunity is very low it’s very difficult for you to fight it. Even – whatever the situation is, it’s very…you can’t…you will lose appetite, you will lose strength, you will lose confidence, you will lose a lot there. But, in spite of all that, without losing all of that, having your…having a strong-mindedness, eating well, sleeping well, and knowing that you have the best care that you can – even the little help that comes, being grateful to them and, and thankful to whatever’s being there – you can fight it and overcome it if there is a cure.
 
And it’ll…it’s…it takes long time for some people, but you have to fight it and come out with confidence and having positive thoughts and being and being positive with people as well and encouraging people, not scaring them away. With good positivity, good food, good rest, and good multivitamins that can really support you with your lymphocytes and your pathotypes and your white blood cells – keeping your blood tiptop is the main thing to fight against any of this I’ve realised.
 
Yeah, fantastic. That’s good advice.
 
So…Thank you. I think that’s from my experience and what I’m going through, and from all the specialists that I’ve been getting from different people and what I’m trying to do slowly to come up into an active mode, from a passive mode to an active mode. This is what I am doing at the moment.
 

 

Embed Print Transcript

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.

What would be your messages for others maybe, going through Long Covid?
 
Be kind to yourself, I think. Be more accepting. So, I think always wanting to, to believe that you will get better, but try not to be too impatient about making it happen. And how you feel is how you feel, and I think there’s the kind of comparisons with other people are probably unhelpful, you know: ‘oh well, this person had it at the same time and they’re better and I’m not better and I ought to be feeling better,’ you know. That; all that stuff doesn’t help. Really to find those coping mechanisms; and for me, you know, the energy bag, beanbags was a really helpful way of being able to at least get to the end of the day and think ‘well, I got through today and I have done whatever it was that I sort of thought that I might be able to do without being poleaxed.’
 
Yeah, listen to your body, you know; if you’re tired go to bed, you know. Don’t, don’t try and do too much. And it will get better. And I think if you don’t have a support network immediately within a family or within other health professionals then keep looking until you find one, you know. There will be – now that it is a thing, – there will be somebody that you can talk to that will be able to help. But yeah, I think be kind to yourself, you know; even if you haven’t got a piece of paper that says, ‘I’ve had Covid’, if you present with this motley array of symptoms [laughs]. And it goes on for what it does then, you know, in a sense it doesn’t matter what you call it, you know. Giving it, giving it a name, I think helps, you know. But if it feels real to you then it’s real.

 

Embed Print Transcript

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...