Impacts on Self and Daily Life

The people we spoke with described the impacts of long COVID on their daily lives and on their sense of self. They told us about how long COVID had profound effects on their physical and mental capacity so that even the most routine activities, such as making a shopping list, reading a book, going for a walk, or taking a shower, became difficult or even impossible for many of them. Some people became anxious or depressed because of this. Others spoke of grieving and mourning their old life because they felt they are no longer the person they used to be. 

 

Loss of physical capacity

Many of our participants were unable to function physically as they had before long COVID. Typically, this meant they couldn’t exercise or perform physical tasks like house cleaning or gardening without suffering ill effects. For people living with severe chronic fatigue, or POTS (postural orthostatic tachycardia syndrome–a condition that causes dizziness, breathlessness, chest pain and heart palpitations), even getting out of bed or taking a shower could be difficult.

Not being able to walk very far or participate in exercise had a big impact on many of the people we spoke with. William “used to do a lot of running and jogging” but, he told us, “I don’t really do that anymore.” Kari “used to be in the gym four times a week and doing weights and running … now I can’t do any of that.” Paulina has two dogs. She explained, “I try to walk them. Sometimes I have to call my husband to come pick me up down the road because I can’t make it back.” Ruth misses a variety of activities that are an important part of her life. She told us, “I can’t really go for walks, let alone run, garden, shovel. I know, it sounds like well, you don’t need to be shoveling, but I want to … I used to swim … the last time that I tried, I think I took four strokes. And my husband had to bring me out of the pool because I was lightheaded. And I started throwing up.”

Apart from the loss of capacity for exercise, some of our participants experienced other physical effects. Hollie lost her sense of taste and smell. She told us, “Any time you eat, you’re just eating to survive. It’s not enjoyable anymore.” Cathy can’t tolerate sunlight, noise, or external stimulation. She explained, “I have these crazy hypersensitivities to sunlight … It makes me feel sick. I can’t be around loud noises. I’ve spent hundreds of dollars to purchase special earplugs … so it kind of deadens the sound.” Ruth “just started socializing with some friends … in very, very small groups, because the noise level … wears me out.”

 

Difficulty with everyday tasks and activities

Loss of physical capacity made it difficult, and sometimes impossible, for people with long COVID to carry out everyday tasks like laundry, cleaning, preparing meals, or grocery shopping. As Melissa found, “I can’t go shopping anymore, just for groceries, for three, four items. Unless I take Advil or something for pain before I go – because I can’t stand.” Grocery shopping was similarly difficult for Hollie who said, “Waiting in line is horrible … you never know if you’re going to pass out or not.” Violaine described the “kit” she needs to attempt a very short trip to the pharmacy. As she told us, « Je réussis à aller des fois faire une mini course dans une pharmacie. Aller chercher une chose qui prend une ou deux minutes. Mais il faut que j’aie ma canne, mes cache-oreilles, des lunettes fumées … Parce que sinon, j’ai l’impression que je vais perdre connaissance. Je deviens hyper étourdie. » [Sometimes I manage to run a mini errand in a drugstore. Fetch something that takes a minute or two. But I’ve got to have my cane, my earplugs, my sunglasses … Because if I don’t, I feel like I’m going to pass out. I get really dizzy.] Translation from original French.

Other everyday tasks could be equally challenging. Kari told us, “I can’t clean my house in one swoop like I used to … I have to break things up … We don’t have a large house and I’m lucky if I can vacuum the whole house at one time.” Maggie feels that long COVID “has robbed me of my independence … I can’t drive, I can’t cook for myself … even showering is problematic … drying my hair is problematic.”

 

Loss of pleasurable activity

Feeling physically weak and being unable to tolerate noise, light, and external stimulation also meant the loss of simple pleasures for many of our participants. Some of the people we spoke with said they simply wished they could more easily spend time outdoors or go for a walk. Violaine talked about her sense of loss at not being able to pursue activities she had enjoyed in the past. « Aller au théâtre, aller au cinéma. Aller entendre des concerts … tout ce qui fait qu’on savoure au maximum l’existence, bien non! T’sais il y a des grandes, grandes pertes de ce côté-là. » [Going to the theater, going to the movies. Going to concerts … all the things that make you enjoy life to the full, well, no! You know, there are great, great losses that way.] Translation from original French.

 

Loss of cognitive capacity

Many of our participants described themselves as experiencing brain fog. This included an inability to concentrate or focus, memory problems, and difficulty dealing with numbers or abstract information. Moreover, mental exertion often seemed to make physical symptoms worse. As Tanya put it, “My mental capacity is far from what it used to be. I don’t remember things. I find mental exertion makes all my symptoms exaggerated that much worse. So, it’s not just physical activity that wears me out, it’s also cognitive energy.” 

Loss of cognitive capacity led to difficulty with a wide range of daily activities. Lyse gave up driving because she can’t concentrate and doesn’t want to cause an accident.  « Je n’attendrai pas de tuer quelqu’un ou me tuer ou me blesser à vie. Fait que j’ai remis ma voiture au concessionnaire. Je n’ai plus d’auto. » [I won’t wait to kill someone or injure myself for the rest of my life. So I took my car back to the dealer. I don’t have a car anymore.] Translation from original French. Cathy notices “It’s difficult for me to do my online banking. It’s difficult for me to fill in forms … It’s embarrassing … I was a multi-tasker. I was a high-energy person. And now … I feel like … a frail elderly person with dementia.”

Many participants described themselves as being unable to read, watch TV or listen to music, both because they lacked concentration and because it made them feel physically sick. Paulina told us, “I used to read so many books. I cannot get past, like, two or three pages, because I … fall asleep. It’s so draining mentally.” Jennifer 1 had come up with the strategy of listening to audiobooks or re-reading books she had read before because it was easier than reading new books.

 

Accepting permanent disability

Most of the people we spoke with were experiencing some degree of improvement, however small, or remained hopeful that things would get better over time. However, several of our participants felt that, in order to get on with their lives, they needed to confront the fact that they were now permanently disabled. Jennifer 2 tried to carry on with her law career and her active life but eventually realized this had become impossible. She concluded, “In order to cope with COVID you’ve got to admit … how vulnerable you are. You have to accept it, admit it and you have to accept help … and you have to be prepared to make drastic changes to your life, like retiring, moving … huge decisions, really huge decisions.” Carrie 1 came to a similar conclusion. She said, “I’m always going to hold out that I’m one of the 5% that gets a remission and spontaneously wakes up and lives their life as it used to be. There’s always that teeny tiny bit of hope … But … if someone tells you have a 95% chance of dying, you’re probably going to prepare your will and get things in order … So I’m just going to get my life in order, because this is my new normal.”

 

Grieving for your old life and your former self

The impacts of long COVID were life changing for most of the people we spoke with. Our participants told us, not only, about the ways in which their lives were different, but about how long COVID left them feeling like they were no longer the person they used to be. Many used the language of grief and of mourning, as though something or someone had died. 

Paulina feels like she is “still in the grieving process … I can’t even go on nature walks. I can’t do the little things that kind of bring you joy throughout the day.” William describes long COVID as “life changing. On the surface I look normal but … I’m not what I used to be, at least not for the time being.” Maggie feels like long COVID has “robbed me of my independence.” While for Cathy, “It controls my life. It has taken away everything from me.”

 

Change of personality

Several of the people we spoke with told us that living with long COVID had changed their personality. A common feeling was that people had lost their patience. Nicole feels like her “fuse is a lot shorter.” Lyse had once been considered “an angel of patience” by her employer. Now she gets angry very easily and feels like that’s not her. « J’ai même eu à un moment donné d’un employeur, un cadeau de Noël, un ange de la patience. Elle m’a dit : « Je te donne ça, parce que toi tu es super patiente. » Mais depuis la COVID, non, je n’ai pas de patience. Je me fâche rapidement. » [At one point I even got a Christmas present from an employer, an angel of patience. She said: “I’m giving you this, because you’re super patient”. But since COVID, no, I have no patience. I get angry very quickly.] Translation from original French. 

Another common observation was that people who had always thought of themselves as helpers now needed help themselves. As Emily put it, “It challenges my identity because I’ve always been that person who is never limited … I’m the one who helps other people, I’m not the one who relies on other people for things.”

Several people who said their identity was partly rooted in being very energetic felt that long COVID had fundamentally changed them. For example, Coucoute told us, « Je suis une autre personne, ça, c’est sûr, je ne suis pas comme avant … Avant j’étais tellement bien et rapide et efficace, avoir de l’énergie. Mais je n’ai plus d’énergie … Ah! Je ne suis plus comme avant. » [I’m a different person, that’s for sure, I’m not like before … Before I was so good and fast and efficient, having energy. But I don’t have energy anymore … Ah! I’m not like I used to be.] Translation from original French.