Psychosocial Impacts of Long COVID
The people we spoke with told us about the profound impacts long COVID had on their lives. Many were experiencing loneliness and isolation as they were only able to leave home for short periods of time and often felt that other people could not understand what they were going through. They also avoided social contact because they were afraid of getting COVID again. Some of our participants were experiencing anxiety and depression as they coped with this difficult, chronic condition. Many expressed the feeling that they have changed and are no longer the same person they were before long COVID.
Loneliness and Isolation
Many of our participants, even those with good support networks, described themselves as feeling lonely and isolated in ways they had never experienced before. As Tanya put it, “I’ve never felt so isolated in my whole life … even though I have a very supportive family around me … It’s a very isolating experience.” Or, as Jean explained, “When you’re at home obviously you miss out on an aspect of socialization … that affects the brain … It may sound great to have the ability to just sit in bed and watch Netflix all day but it gets tired really quickly.”
For Nicole, isolation is made worse by other people doubting long COVID is real.
Transcript
It’s been really isolating. I mean we were all – the whole world was in isolation and everyone knows how difficult that was. But to have this on top of that was really difficult, to be invalidated and people not even believing that you’re sick is really something difficult to […]
Fear of Reinfection
Many of the people we spoke with worried about being around other people because they feared getting COVID again, given that reinfection can make symptoms worse. As Melissa told us, “I don’t want to go out … I don’t want to socialize … there’s still that fear … that fear of other people.” Or as Anna put it, “I have to be honest and say that I would rather stay home now than go … where lots of people are gathering. I’m afraid to contract it again … I’m just afraid that it would spark another worsening of the symptoms. And I think that most of the people with long COVID have the same fear.”
Katherine worries about going back to the office.
Transcript
I think my anxiety level is higher in that I am scared to return to the workplace. I am scared to be exposed again to COVID because of what happened to me this time. I really want to avoid it at all costs. I thought I was avoiding it at […]
Carrie 1 reflects on how the fear of reinfection impacts friendships.
Transcript
I think long COVID as well has had a lot of impact, I think on my friendships. I used to be a very social person. I was always on the social committee at work and always loved spending time with my colleagues and it’s been really hard I think on […]
Cathy says she has become a hermit.
Transcript
There’s also the psychological effects of the fear of getting it again. Because some people get it two and three times and then they get very sick and they get sicker. And there’s no way to tell. So then once again I have to be very careful to protect myself. […]
Living with Long COVID Impacts Mental Health
The people we spoke with described a wide variety of ways in which living with long COVID impacted their mental health. Some were people who had experienced anxiety, depression or other mental health conditions before COVID. Several, though not all, said that their experience with long COVID had made those conditions worse. A number of participants had reached out for professional mental health support to help them cope with specific symptoms or with chronic illness more generally. Some had also been prescribed medications for depression and anxiety.
Kristen started working with a therapist which, she said, “has changed my life dramatically. I love my therapist and we’ve done a lot of work to get through such a hard year.” William had taken a similar approach. He explained, “I’m with a therapist right now. I’ve seen a psychologist and a psychiatrist which have also been helpful. And I think that’s really helpful for me specifically because I was so independent I didn’t really have this broad network of people that I could reach out to.” Paulina described herself as experiencing anxiety and depression because her life “has been turned upside down … I can’t do the little things that bring you joy throughout the day … So definitely I was starting to get very, very depressed and anxious, and so the Lexapro has helped with that.” Victor found that his anxiety increased dramatically with long COVID. However, moving in with friends and taking medication helped a lot. He told us, “When I was alone in my apartment, not taking meds for anxiety … I was a total wreck … It was a feeling of desperation that I hadn’t had before … Since I came here, I started taking the meds … it’s like night and day.”
Unfortunately, even with professional support and/or medication, some of the people we spoke with were experiencing serious mental health effects due to the strain of living with long COVID. Jennifer 1 reflected, “When I started my COVID journey with my psychologist things were OK. Here I am a year and a bit later and I now have severe anxiety and depression, and I am on an antidepressant. I am not ashamed to be on an antidepressant, but never did I think that I would hit a point that I would need to be on one.” Cher experienced severe worsening of an existing depression. She explained, “I had struggled with depression before in my life, but have always been able to kind of keep it under wraps. Wasn’t really able to keep it under wraps anymore … my GP was worried about me too, and so we ended up going down the road of seeing a psychiatrist and changing huge amounts of my meds … I was pretty suicidal every single day, just because I was like ‘what am I supposed to do with this pain? How am I supposed to live my life?’”
Chris feels like he is riding a roller coaster of physical symptoms and anxiety.
Transcript
There’s no question that I have had a definite triggering of anxiety. That, you know, I didn’t have or wasn’t aware of issues with anxiety before I started feeling these symptoms. But certainly initially when I just had a range of unknown symptoms that I didn’t have any way to […]
Lyse finds herself crying for no reason other than fatigue.
Transcript
Il y a des journées aussi que quand je suis trop fatiguée, je le sens, parce que je me mets à pleurer pour rien. C’est ça, je vais penser à quelque chose puis là je me mets à pleurer ou je vais parler avec mon conjoint, puis à un moment […]
Loss of Physical Activity
For many of the people we spoke with, physical activity was a healthy way of dealing with stress in their life before COVID. One of the most widely shared reasons participants gave for becoming depressed was losing their ability to exercise. Hollie put it simply when she explained, “I used to go to the gym regularly … I was in good shape. That has been difficult for me because if you have a certain lifestyle and you have to suddenly change, it takes a toll on you.” Or as Nicole put it, “my coping mechanism in the past for anxiety has always been exercise. And so with not having that as an outlet, I feel like that’s making everything worse.”
Unpredictability of Long COVID
Another common reason participants gave for mental distress was the unpredictability of long COVID. This included both the way symptoms would get better or worse for no obvious reason, as well as uncertainty about what would happen to them over the long term.
Having symptoms flare up after a period of relative improvement could be very demoralizing for many of the people we spoke with. Lori talked about the way “it affects you because every time you get sick it pushes you down, it makes you feel like ‘You’ve got to be kidding, again’? And so repetitively that does something to you … the negative feelings of it, they always come back.”
Ruth no longer trusts her body.
Transcript
So yes, this has affected me psychologically, for sure. And emotionally, just not knowing how you’re going to be in a few hours, or the next day, makes you not trust your body. I knew my body very well. You know, symptoms, like signs. I just knew it so well. […]
Lesley finds uncertainty about the possible long-term effects of long COVID to be frightening.
Transcript
I think one of the scariest things, psychologically, is not knowing what’s going to happen and then seeing like – you know for the most part if you get a diagnosis of let’s say diabetes, you have a relative trajectory of what can happen, of course it can go extreme. […]
Valérie hits the wall emotionally every time her symptoms flare up.
Written testimony
Les rechutes, c’est ce qui est vraiment le plus difficile avec la COVID longue … parce qu’on ne sait jamais si on va vraiment revenir comme on était avant la rechute. Puis on ne sait jamais dans combien de temps non plus … Mais comme je dis, quand j’arrive dans une rechute, que là je frappe un mur et que je régresse énormément puis t’sais c’est sûr que quand qu’on vit des rechutes, bien en tout cas, pour ma part, les symptômes reviennent tellement en force, que non seulement je ne suis plus capable de faire qu’est-ce que j’étais capable de faire avant la rechute, mais en plus de ça, je dois composer avec des symptômes qui rendent ma vie très désagréable comme des sensations de brûlure, comme si j’avais un coup de soleil sur tout le corps. Des douleurs musculaires, articulaires, des maux de tête, tellement intense, que juste la lumière le soir, c’est l’enfer! L’hyper sensibilité sensorielle devient juste complètement hors contrôle, au point où je dois passer une grosse partie de ma soirée dans ma chambre, dans le noir, avec pas de bruit, rien. Ça, c’est les moments que je trouve le plus difficiles parce que je me retrouve encore dans une espèce de bulle de solitude, qui m’amène à … qui génère énormément d’anxiété aussi à ces moments-là, parce que justement t’sais on… Je ne peux comme rien faire, parce que là, je suis comme en surcharge. Puis à ce moment-là, c’est très facile pour le cerveau commencer à spinner comme on dit. À réfléchir à toutes sortes d’affaires puis se faire toutes sortes de scénarios.
[Relapses are really the hardest thing about long COVID … Because you never know if you’re really going to come back the way you were before the relapse. And you never know how long it’ll be before you’re back … But as I say, when I reach the point of relapse, I hit a wall and I regress enormously, and you know, it’s clear that when you’re experiencing relapses, well in any case, for my part, the symptoms come back so strongly, that not only am I no longer able to do what I was able to do before the relapse, but on top of that, I have to deal with symptoms that make my life very unpleasant, like burning sensations, as if I had a sunburn all over my body. Muscle pain, joint pain, headaches, so intense that just the light at night is hell! Sensory hyper-sensitivity just goes completely out of control, to the point where I have to spend a large part of my evening in my room, in the dark, with no noise, nothing. Those are the times I find the most difficult, because I’m still in a kind of bubble of solitude, which leads me to… which also generates a lot of anxiety at those times, because, you know… I can’t do anything, because I’m on overload. Then it’s very easy for the brain to start spinning, as they say. Thinking about all sorts of things and then making up all sorts of scenarios.] Translation from original French.
Losing the Person You Used to Be
While most of the people we spoke with were adjusting to life with long COVID, many recalled dark moments where they experienced a sense of hopelessness and grieved the loss of their former selves. Aislene felt “a lot of depression and guilt” because she was unable to do what she used to do and found it “disheartening” to not be able to do the things she loves. Paulina told us she was “kind of losing hope” that she would ever recover. She said, “It’s grieving, it’s grieving your lifestyle, it’s grieving your relationships. I lost friends, you know, that don’t believe the whole COVID thing and it’s just been hard. So. I think I just need to, like, accept that this is how my life is now and I have to enjoy it the best I can.” Jason described himself as “a husk of my old self and not able to experience things as vibrantly as I was before.”
Kari understands why some people with long COVID experience despair.
Transcript
I have said to my psychologist, I understand, not that I want to, but I understand why people take their life, because they truly feel like there’s no point and they’re at the end of their rope, because you know, you literally are grieving your previous life. We, I can’t […]
Tanya grieves the healthy, mobile person she used to be.
Transcript
I feel like I have and continue to grieve the healthy, mobile person that I used to be. And, you know, the unknown of whether this is the way I’m going to be from now on. I mean, there’s certainly no news out there about there being a cure for […]
Anna says, people don't appreciate what it means to go from being healthy to chronically ill overnight.
Transcript
Nobody really thinks about how mentally that impacts a person who was like just, you know, just a perfectly healthy person like few days ago, and then ends up in an emergency three times in a row within five days, or suddenly cannot eat anything, anything at all. And not […]