Recognizing the Start of Long COVID
The coronavirus (COVID-19) pandemic took the world by surprise. Long COVID did as well. Long COVID presented such a wide variety of symptoms that scientists, healthcare providers and patients struggled to make sense of them. The usual tests and diagnostic approaches often couldn’t explain what people were experiencing. And because long COVID was not acknowledged until quite late in the pandemic, symptoms were sometimes attributed to other causes such as depression, anxiety, or menopause. This caused great distress to people who felt they were not being taken seriously by doctors and other healthcare providers.
Some of the people we spoke with had acute COVID symptoms, such as headaches, shortness of breath, or fatigue that just never went away. As Hollie told us, “I first got COVID around the seventh or eighth of December, and I think [my symptoms] lasted for about a week and a half. And then after that … things just didn’t go away. Like the headache didn’t go away. I was having headaches probably like three or four days a week, and they were worse than I’d ever experienced. The fatigue never went away.”
Other people had symptoms that appeared weeks or even months after their initial infection. Several realized that something was wrong when they tried to get back to work or exercise and found themselves feeling extremely unwell. It was common for people to doubt their own experience and to wonder if they were imagining things because their symptoms seemed so strange.
Jean's symptoms appeared weeks after recovery from her initial infection.
Transcript
Anyway, probably about a month and a half after I recovered, I started feeling certain symptoms and I had difficulty catching my breath, difficulty taking deep breaths. I thought maybe at first it was anxiety. My doctor thought so as well. Then I was getting shaky hands and then I […]
William's long COVID symptoms emerged over time.
Transcript
But in that third week I was starting to do things because I was allowed out of the house, started to do my laundry and go shopping and stuff. And then one day at the end of the week three, so like coming up to a month into it I […]
Katherine was experiencing a wide range of symptoms when she finally went to see her doctor.
Transcript
When we got to around six weeks and I wasn’t feeling any better, I made an appointment with my family doctor. And I went into see her. And I described my symptoms. And at that point, I was still experiencing some severe shortness of breath. The fatigue was remarkable. I […]
Emily remembers how no one, including herself, linked her symptoms to COVID.
Transcript
I felt like I was crazy because I had all of these symptoms that wouldn’t go away and I couldn’t work, no matter how hard I tried and my brain was so foggy. And my physician really didn’t have any – anything to offer, he didn’t know. And everybody at […]
At first, Kari doubted her own symptoms.
Transcript
There has been days where I thought, “Geez, maybe it is in my head. Like maybe I am just in a depression or whatever they thought I was in and maybe I’ll just, I’ll go for a big walk, and I’ll feel better tomorrow.” And then you do that and […]
A moment of realization
Several of the people we spoke with described a particular moment or event that made them realize something wasn’t right. Jennifer 2 and her husband both had COVID at the same time. She recalled that, after two weeks, her husband “went out for a run and he was perfectly fine. I had trouble … walking to the washroom.” Chris noticed “breathlessness doing very basic things, like a short walk or walking up stairs. And then that proceeded to dizziness and then heart palpitations.” Luna remembered the day she realized something was wrong like this: “Spring was coming … and I decided to take a nice long walk on the mountain. And I remember … a flushed feeling while going up the hill, like my skin was too hot, like I shouldn’t really be doing this much exercise but let’s get through it because that’s how one gets better from things … I was in bed again for a week because of that one walk and I thought, “Something’s really wrong here.” Ruth was feeling better after her acute COVID symptoms went away. She told us, “I started to get a little bit of energy back, and I gardened even breathless, but I was gardening and I thought I’ll just get better. And one day I woke up about three or four days later … and I couldn’t really stand up by myself. Everything just changed that day … I even dropped a glass of water and I broke it because I couldn’t even hold it with my hand to bring it to my mouth. So it was something very shocking.”
Violaine went for a short walk and was unable to make it back home.
Transcript
Donc mon amoureux, après dix jours, il est venu me chercher pour qu’on aille prendre une marche, sortir de la maison ensemble, je n’étais plus contagieuse. Donc on s’est mis à marcher, puis rendue au coin de la rue ouf! J’étais essoufflée. Ça tournait. Donc on voulait se rendre jusqu’à […]
Clémentine realized she had brain fog when she couldn't remember a friend's name.
Transcript
So I didn’t notice it at first, I only noticed it because other people told me. I did seem to be losing a lot of material objects and forgetting things a lot in the month of February, so just after. And then mid-February I noticed one day that I went […]
Returning to work and other activities proves impossible
Several of the people we spoke with realized that they were experiencing ongoing symptoms when they tried to go back to work and were overcome with exhaustion. Many said they were unable to do anything but sleep when they came home. Others tried to get back to leisure activities that they used to enjoy and found themselves completely incapacitated.
Cher tried to carry on working but eventually found it impossible.
Transcript
So I had my positive test results in March, March 16th, 2021. And I was pretty sick for pretty much a month, where I wasn’t doing much of anything except for being in bed. And then by April 17th, so exactly one month after, I was trying to go back […]
Cathy recalls that even working part time left her unable to do anything else.
Transcript
So, after two-and-a-half months at home they sent me back to work part-time. And I realized, as soon as I started, I was in over my head because I was doing four hours per day. But that’s all I could do. Like, I would come home and go to bed. […]
Coucoute couldn't manage her physical job as a care assistant.
Written testimony
Au bout de 14 jours, je rentre pour travailler. A chaque patient où je suis allée travailler, j’ai vraiment mal, je me sens vraiment fatiguée. Puis qu’est-ce qui arrive? Je ne me sens pas en forme après 14 jours? Je suis allée ma boss… J’ai déclaré : “Aujourd’hui, je ne me sens plus comme avant. Je me sens faible, je n’arrive pas à me mettre debout. Je suis fatiguée. À chaque patient que je lave, je vais m’asseoir … J’avais deux semaines de vacances, je reste à la maison pour me reposer. Je me sens toujours mal, vraiment, vraiment mal encore, dans mon dos, j’ai une grosse douleur lombaire. J’ai une grosse douleur, je ne me sens pas bien. Je n’arrive pas à m’occuper de mes affaires, je me sens faible à chaque fois. Je me sens toujours fatigue.”
[After 14 days, I go back to work. Every patient I’ve been to, I’m really sore, I feel really tired. Then what happens? I don’t feel well after 14 days? I went to my boss… I said: “Today, I don’t feel like I used to. I feel weak, I can’t stand up. I’m tired. Every time I wash a patient, I go and sit down… I had two weeks off, I’m staying home to rest. I still feel bad, really, really bad again, in my back, I have big lower back pain. I’m in a lot of pain, I don’t feel well. I can’t take care of my business, I feel weak every time. I always feel tired.] Translation from original French.
Kari had a complete crash when she tried to go back to nursing.
Transcript
Yeah, I got COVID working in emergency in December of 2020. And was completely off work until the end of January. I did go back to work February, nursing. I did that for about six months, and I just felt that, I just, things weren’t the same. I was tired. […]
Carrie 2 was experiencing strange symptoms but didn't want to believe she had long COVID.
Transcript
And so then around the end of June – so a few months later – my husband said, “Look, you know, we have to get outside.” I hadn’t done anything other than work. And so we decided to go strawberry picking and I was kind of excited and we went […]