Advice to Others Living with Long COVID
The people we spoke with offered advice to others living with long COVID based on their experience with the condition over months and, in some cases, up to two years. They emphasized the importance of prioritizing your own physical and emotional well-being, making the most of your life as it is now, advocating for yourself, and finding appropriate support.
Put your own needs first
One of the most powerful messages shared by participants was that, when you are living with long COVID, looking after yourself is more important than pleasing or looking after others. Kari felt this was especially true for women who, “want to be there for everybody.” She said, “It’s OK to not be there for everybody. It’s OK for you to just be there for yourself … and put yourself as a priority … Once you get better, you can look after them, but right now, you need to look after you.”
Some participants talked about the steps they take to manage their own physical needs. For example, Chris focusses on, “little modifications that will help you manage and control symptoms, as opposed to dwelling on, ‘I need to get over this. I need to find the cure, or the solution’ … It’s a more manageable approach.” Others, like Lesley, find value in the basics, such as “try[ing] to keep yourself hydrated … to eat decent choices for food … [to] move your body every day, get outside, get some fresh air.”
Elaine is getting back to the basics of good health.
Transcript
Focus on your overall health, focus on eating real food, getting enough exercise, getting fresh air. You know, doing all of those things that they’ve always told us to do. Getting back to basic health so that your body has the ability to heal as much as it can. I […]
Jason encourages others to listen to their bodies.
Written testimony
Learn to introspect, like really understand your body and how to listen to your body. Understand what makes your body feel good and what makes your body feel worse and continue to experiment and find ways of responding to what your body is telling you and to look after it as best as possible. A lot of it is really hard to do because we have, ingrained behaviours run deep and it’s very hard to change them, but behaviours that maybe would have not caused health issues before you’ve had COVID, that are now leading to health issues. Like your body is in a new normal and until the equilibrium can be like restored you’re going to have to make a lot more sacrifices. That’s what I found personally.
Stop, rest, pace
One of the most widely-shared messages from the people we spoke with related to the importance of managing your energy appropriately. A traditional approach to recovery from illness often involves “pushing yourself” in order to regain strength and capacity. But we now know that this is not the right approach with long COVID. Pushing yourself seems to make the condition worse. Pacing is an approach that balances rest and activity in order to avoid the total exhaustion known as “post-exertional malaise” or PEM. PEM causes people to “crash” leaving them unable to manage basic needs such as taking a shower or getting dressed and can even affect people’s ability to sit up or get out of bed, read, watch tv, or think.
Cathy found that, “If you push yourself like I did and go back to work, you end up getting sicker … pacing is what the term is to prevent the symptoms getting worse with this post-exertional malaise.” Carrie explained that, “If you keep pushing until you collapse, you will become more sick and more disabled than you need to be. So if you stop, rest, pace, there’s a good chance you can stay mild or moderate and have a better quality of life.”
Cher wishes that she had stopped working sooner than she did.
Transcript
Stop working. And even when you think you have to keep working, stop working. Because I feel like now – learning now that had I not pushed myself for all of those months, that I could have maybe gone on bedrest and then recovered fully, is really frustrating. But again, […]
Nicole now realizes that exercise is not always the right approach.
Transcript
I would say, “Don’t push yourself, don’t try and push through this.” I’m someone who would always push through an injury and not rest and this is not something that you can push your way through, you will make yourself worse. Even trying to explain to my daughter, you know […]
Valérie warns that pushing yourself too hard can have long-term negative consequences.
Written testimony
On se fait toujours dire, en tout cas la plupart du temps on se fait dire que tant qu’on n’est pas en forme, il faut faire de l’exercice, qu’on va développer notre endurance, que ça va aller mieux, que l’exercice c’est bon pour la santé. Non là, attention! Il y en a peut-être pour qui ça va fonctionner, parce qu’ils ne font pas de malaise post-effort. Mais attention! Restez dans vos limites! Parce que si vous dépassez vos limites, c’est à ce moment-là que vous risquez de faire des rechutes, vous n’avancerez pas plus vite dans votre rétablissement, mais vraiment pas, puis en plus de ça, vous risquez d’avoir des séquelles permanentes.
[We are always told, or at least most of the time we are told that, if we are not in shape, we should exercise, that we will develop our endurance, that it will get better, that exercise is good for our health. No, be careful! There may be some people for whom it will work, because they don’t get post-exertional malaise. But be careful! Stay within your limits! Because if you go beyond your limits, that’s when you risk relapsing. You won’t progress any faster in your recovery, you really won’t, and on top of that, you risk having permanent after-effects.] Translation from original French.
Several participants received inappropriate advice from healthcare providers about their approach to recovery because those providers were not aware of the importance of pacing. For example, they were told it would be good for them to push themselves physically or to go back to work even if they did not feel able to. These participants stressed the importance of challenging such advice and educating their care providers if necessary.
Violaine encourages people to challenge healthcare providers giving inappropriate advice.
Transcript
Il faut être capable de défier un peu les gens qui vont nous donner actuellement de mauvais conseils puis aller vers ce qui peut nous sauver là. Parce qu’il y a des choses actuellement qu’on risque de faire, puis qui peuvent vraiment nous nuire à long terme. Donc quel scandale, […]
Look after your psychological and emotional well-being
All of the people we spoke with were experiencing some degree of psychological or emotional distress related to living with long COVID. Many were shocked by how incapacitated they were, being unable to work, live or function as they had before. In addition, many of the people we spoke with had encountered healthcare providers and others who did not believe that their symptoms were related to COVID. Some even began to wonder if they were imagining things themselves. For these reasons, among others, our participants emphasized the importance of looking after your psychological and emotional health.
Several participants urged others with long COVID not to doubt themselves. As Ruth put it, “This is not in your head … You may have anxiety … you may be depressed, but that does not mean that what you are feeling after the virus are not effects from it. What you’re feeling is real.” Jennifer offered similar advice. “I would say don’t question it and don’t question yourself. It is real.” Violaine felt the same way. She too urged people to trust themselves: « Croyez-vous, vous-même, ayez confiance en vous-même, dites-vous que vous n’êtes pas folle! Que si vous n’êtes pas capable de lire, vous n’êtes pas folle, vous n’êtes pas toute seule, c’est parce que votre cerveau est atteint. » [Believe in yourself, have confidence in yourself, tell yourself that you are not crazy! That if you are not able to read, you are not crazy, you are not alone, it is because your brain is affected.] Translation from original French.
The people we spoke with also talked about how they tackle the emotional and psychological challenges they face every day. For Lesley, it was a matter of trying, “to find some joy, find some happiness somewhere or somehow so that it doesn’t all feel so overwhelming.” Melissa encouraged people to, “Dig deep inside yourself, find something that you enjoy … Have a hobby, art is a very good therapy.” Jean had come to appreciate the smallest things. As she put it, “Even if it’s just to stand outside for five minutes and come back in, just do it. Do it. Get some fresh air. I’ve never been one to go out there and do anything, ever, and this actually has changed me …This is something that I really cherish now, the ability to do that. Chris focuses, “not [on] what has this taken away from me – but what are the small, measured steps that I can take, to do things that are of value for me. Focus on your values and what you hope to be able to achieve and why. As opposed to dwelling on the – “what I was doing before and … why can I not do it anymore?” Coucoute draws on her religious faith when she feels overwhelmed: « Quand tu n’as plus de force, comme tu n’es plus comme avant … Je le prie lui souvent de me remettre comme avant, comme j’étais avant. » [When you don’t have strength anymore, when you are not like before … I often pray to him to put me back to the way I was before.] Translation from original French.
William says, "Be patient."
Transcript
Patience. You need a lot of patience. I don’t have a lot of patience but that is the key to this, you need the patience because if you, you know, you’re looking at it month to month and it’s like, “Why am I not better yet?” and stuff, and you’re […]
Paulina finds ways to distract herself from dark thoughts.
Transcript
Sometimes I do realize that I am starting to spiral and sometimes it doesn’t – it’s not like an environmental thing, it just happens. You just – it’s a bad day. Going outside, getting fresh air, really, having your favourite cup of tea. Just small, small, small things that kind […]
Luna says, "Forgive yourself for not being able to do what you used to do."
Transcript
The main thing is forgive yourself. It’s so painful to not, to not be able to do what you want to do or think you should be able to do and feel like you have to apologize for that. The negative feelings that you have towards yourself for getting into […]
Make the most of your life as it is now
Many of the people we spoke with said they were grieving the loss of the life they once had. While some were still actively grieving, others had come to accept that they could still live a life full of meaning and value even if it was different from the life they had before. However, doing this meant they had to make the most of the life they have now.
Carrie encourages others with long COVID to make appropriate plans for the future even if they feel sad about it. “We can always hold on to the hope that will get better. We don’t need to extinguish that … but we also should plan for what is probable. And the probability is that if we’ve been sick for a long time, we’re probably not going to get better anytime soon … and if we accept that we might not get better, it gives us a better chance of planning our life safely. Of figuring out our finances. Of making choices … that allow us to have the best quality of life.”
Jennifer 2 urges others to start making small adjustments.
Transcript
Maybe you’ll be lucky and it will go away. I know that there is a real chance that it will not, so don’t panic but start thinking and start making adjustments to your life. Start with small adjustments but know that you might have to make some really big ones […]
Carrie 1 now lives in a "soulless" apartment building but realizes that it is better suited to her current needs.
Transcript
I really wanted to live in a big, beautiful brick apartment building like I was used to living in. And now I live in a soulless, 15 storey apartment building. But the reason I picked it is because it has all the adaptations I need. It has heated parking garage; […]
Advocate for yourself
Advocacy can take different forms. Many of the people we spoke with found they had to advocate for themselves in order to get appropriate healthcare, the accommodations they need, and personal support. Ruth talked about looking elsewhere if your healthcare provider doesn’t give you what you need. “Definitely, don’t give up on getting help. If the person that you go see doesn’t listen, doesn’t know how to help you … you need to find a new provider. And you need to let them know why you’re leaving.” Maggie says, “Use your voice … and if it means being a thorn in people’s side, you can do that nicely, but you need to use your voice and make sure people know about what’s going on. Don’t hide things.”
Jason says, "Ask for all your health records."
Written testimony
Ask for all your health records. Ask for all information. Keep it centralized. Keep it in one place because if the patient isn’t doing it then it’s not going to go through on the provider side, unfortunately. I’m very critical about how the provinces have gone about determining how health records are stored and how communication happens between providers. It feels very much like it is stuck with like late ’90s technologies within like a 1970s political economy where like records are stored locally at clinics. It’s very messed up.
Aislene feels that talking openly about long COVID spreads awareness and encourages others.
Transcript
Advocate for yourself. Don’t let someone tell you that you don’t have it or that you’re being dramatic. Talk about it openly because it will help spread awareness, it will help other people open up about their own struggles. It wasn’t until I started talking about it that I was […]
Carrie 1 asks for other people to respect her needs.
Transcript
I would always ask nicely, but making people accommodate you is also really important. I think I spent a lot of time when I first was sick, trying to not appear sick, and trying to not appear disabled and trying to adapt to everybody else’s needs. And then I realized […]
Find appropriate support
Finding appropriate support was important to our participants. Support could come from many sources including family, friends, colleagues, employers, online support groups and the like. That said, there was no guarantee that the people who were closest to you would necessarily be most able to provide support. For example, Kristen needed “those people that you can call at any time and cry. I did that a lot at night when I couldn’t sleep … My husband was very supportive, but I never felt like I wanted to put it all on him, so I would recommend finding somebody – anybody who maybe understands or just can listen.”
Valérie advised, « Essayer de vous entourer des gens qui veulent vraiment vous comprendre, mais qui ne vous siphonnent pas plein d’énergie. Qui vous ne demandent pas plein d’énergie à toujours revivre avec des commentaires qui vont nuire. Essayer de vous entourer de gens positifs qui vont être là plus pour vous accompagner sans mettre de pression sur votre établissement. Juste simplement être là. » [English translation not yet available.]
Carrie encouraged others to “Find your peer support groups, but please vet them, not all of them are safe. Not all of them are good places to be. But if you can find a safe, evidence-based, science driven support group that is safely moderated, please join it and find your peers and you’ll feel a lot less alone.”