Article Figures & Tables
Tables
Characteristic No. (%) of participants*
n = 41Age, yr, mean ± SD (range) 47.9 ± 10.4 (29–83) Sex Female 28 (68.3) Male 13 (31.7) Residence† Western Canada 33 (80.5) Central Canada 4 (9.8) Atlantic Canada 4 (9.8) Time elapsed since acute SARS-CoV-2 infection, mo, mean ± SD (range) 15.8 ± 6.4 (3–27) Pre-existing chronic illness Yes 11 (26.8) No 30 (73.2) Hospitalization during acute SARS-CoV-2 infection Intensive care 3 (7.3) Hospitalized 9 (22.0) Not hospitalized 29 (70.7) Employment status Full-time 15 (36.6) Part-time 12 (29.3) On sick leave owing to post-COVID-19 symptoms 6 (14.6) On paid long-term disability owing to post-COVID-19 symptoms 3 (7.3) Retired 2 (4.9) Unemployed 3 (7.3) Changes in employment due to post-COVID-19 symptoms Reduced hours 10 (24.3) Had to change jobs 7 (17.1) No change in employment status (including retired and unemployed) 24 (58.5) Type of symptom Representative quotation Tachycardia/hypotension “Any time I rise or change position, my heart rate goes really high, 140 usually, and then my blood pressure drops … every time I stand up, every time I get moving. And then it causes dizziness, nausea, all those fun symptoms.” (F1) Dyspnea “It would take me an hour to walk up the flight of stairs and back down … ‘cause I was so short of breath.” (F5) Exercise capacity “I can go out to take the garbage bin down, and I sound like I ran a mile coming back into the house. I’m panting and my heart rate is just — it’s wild.” (F2) Sleep problems “I’ll sleep for 20 minutes and then I’ll be awake … when you add that all up, it’s like 3 hours of sleep I’ve had, but all broken up.” (F10) Headache “One of my goals is I want to have a day without a headache. I don’t even remember what that’s like.” (F3) Pain “I was just hurting, my muscles and joints were just hurting so bad, I could hardly move around … I was in so much pain all over, from the top of my head to the bottom of my feet.” (F9) Fatigue “I could do … a kids’ puzzle for 15 minutes, and I would have to rest physically and cognitively for 14 hours and try again the next day.” (F6) Memory impairment “I haven’t been able to remember what I had for supper the next day for a year.” (F4) Brain fog “The memory fog is horrible. I used to have a mind of a steel trap, now I’m the Post-it note girl.” (F6) Word-finding difficulty “I started losing words, so I forgot the word for spoon. I forgot the function of a spoon, I was trying to get food from a container into another container and I thought, ‘if only there is a tool that I can use to get this food from here to there,’ and I couldn’t think of a spoon.” (F7) Tinnitus “I’ve got ringing ears since May of 2020 … falling asleep, that can sometimes be a problem … I know I’ve overdone it if my ears are extra loud ringing.” (F8) Phantosmia “I thought I was crazy because I’d say to my husband, ‘I don’t know what’s wrong with me, I keep smelling this smell,’ and he’d go, ‘I don’t smell it’ …, it was bizarre and you think you’re losing your marbles because you’d smell this smell.” (F9) Anxiety “I’m always scared I’m going to have a heart attack … . If I go too far, am I going to have a heart attack, and I’m by myself, so I try not to push too hard.” (F9) Depression “It’s hard to try and stay optimistic … you can get down in the dumps and be like, [sighs] this sucks. You do get into that depressive state and ‘am I ever gonna get better?’ And if I’m not, what’s the point?” (F6)
“You feel like you’re a burden to everybody. And it’s not — when you’re sick, and then you feel like you’re a waste of skin to people. It’s not a conducive thing for healing or getting better.” (F1)Suicidal ideation “I probably would’ve killed myself at the rate I was going. ‘Cause it’s a steep decline.” (F5) Type of impact Representative quotations Family unit “It definitely affects … your life with your family because they see me struggling. It’s very hard to remain positive, but every day I try to put on a bright face, to try to not make my family worry. It’s just the mental toll’s been tremendous.” (F2)
“So you don’t say anything to them, and you don’t want them to be worried and feel like they have to jump.” (F7)Spouse “When I was off, my wife took on 2 other jobs after her full-time job to make up the downfall or the shortfall of the money that we weren’t bringing in … it’s affecting my wife and her health and the health care system for her because eventually, she’s gonna burn out.” (F1) Children “I notice a lot of change in my 7-year-old because it’s just kind of her normal now that Mom’s in bed a lot and Mom can’t come … just don’t know how is that gonna affect them in a couple of years when a big chunk of their childhood, Mom’s just been sick.” (F1) Friends “You’re bombarding your family, your friends with how you feel all the time.” (F1) Family activities “I’ve been robbed of being the mother that I want to be. And as well, the wife. We don’t have energy to go out on dates. If I can get out of bed and go to activities and do a little bit of meal prepping, that’s a big day for me. So, it’s really impacted my family a lot.” (F1) Finances “There’s gotta be something for us that have suffered and been through it and lost salary and credit cards are maxed out and you’ve borrowed money from your parents or you’ve borrowed money from here and you’re looking at doing something to take a high interest loan out just to pay the bills.” (F3) Employment “I’d go home just exhausted and I’d be useless the next day, because it just would wear me out, and I mean, it’s not physical work, it was the mental. It can be very stressful work.” (F9)
“I’ve been off from work for 2 years now. Fortunately, I have a really good disability plan through my company, and they’ve been very understanding.” (F6)
“How do I go back to work as a nurse when I have good days, bad days, and I don’t see them coming?” (F1)Function “I live out on an acreage, so I’m by myself. I have to haul bales, I have to haul water … it’s very physical work, where it used to be a piece of cake for me … now, it’s a huge, huge effort.” (F9)
“I haven’t driven hardly at all for the last 2 years and I have driven all over North America. Put me in a car that’s my happy place, and now I do not trust myself to drive.” (F6)- Table 4:
Factors affecting the complex work of recovering from persistent post-COVID-19 symptoms
Factor Representative quotation Family support “I got my family to drop some vitamins, just bring me juice … my husband was stuck at home, I was stuck at home. Eventually, I got him to take me to the hospital, I spent the whole day there.” (F9)
“Our family has helped as well, but at times, they’re kind of scared to come over.” (F1)
“I’ve had to have my husband come to all my doctor’s appointments because I just can’t process quick enough and answer questions and remember things.” (F4)
“People that live with the long haulers, they deserve an award, or the people that have helped us through this, because they do know, and they understand.” (F6)Level of support from friends “I have a good set of friends who come clean my house, get groceries when I can’t get groceries, all of that.” (F6)
“I have some friends that kinda don’t believe in COVID and think it’s nothing more than a cold. So, it’s been a bit difficult that way.” (F3)Support groups “I joined the American survivor group on Facebook … I’m in a lot of these support groups where we help each other out, thank goodness.” (F6) Need for self-advocacy “I’ve been doing a lot of research, a lot of investigating because I’ve been on my own and the doctors have done nothing but gaslight me.” (F6)
“A lot of times, we’re guiding what [providers] are doing, right? We’re — especially because I have a medical background, so I’m researching and I’m looking and I’m doing anything I can to try to help my situation, right? Which, again, when you’re going through long COVID is extremely exhausting. A lot of people don’t even have the energy to be their own advocate, right?” (F8)Frustration of having symptoms discredited by others “I’ve gotten to the point where I’ve given up trying to explain anything to anyone anymore. It’s just believe it or don’t believe it, I know what I’m going through. And that’s just the way it is.” (F3)
“I’m struggling with the lack of belief. People think I’m faking all the time and I’m like, seriously? Look at my thermometer, it’s 104. I’m not faking!” (F4)Caregiving for others while symptomatic “My mom was immunocompromised … . My mom was not with it. She almost died if I wouldn’t have been looking after her … I didn’t even have a chance to heal from my COVID. I was sick, looking after her. [Cries]” (F4) Concurrent life stresses “My son sort of had a crisis in the fall because after his dad was diagnosed with the second cancer, it just — you know, losing his sister [through death] … and my diagnosis, and my husband’s diagnosis. He thought he was going to lose us both and he wouldn’t have anybody.” (F6) Managing comorbidities alongside post-COVID-19 symptoms “I was able to have 4 of the immunotherapy combo treatments and did quite well, but as soon as that was done, I ended up with something called pneumonitis and then sarcoidosis, so for many, many months, I did not feel well. Felt like I had the flu every day.” (F8) Costs of local private rehabilitation and complementary medicine providers “[The physiotherapist] told me he was limited with what he could — cause I’m funding it myself, cause I have no benefits left at this point.” (F3) Navigating benefits and insurance coverage “When you’re tired and you have fatigue and you have brain fog and you can’t think like you normally did and you don’t have the physical abilities that you normally did, how can you even begin to go through the system of applying for disability, long-term disability, CPP disability? It’s like an endless cycle. You need it but you don’t have the ability to do it. And then when you do, no one believes you and you have to fight through the whole system.” (F9) Denial of benefits on the basis of lack of confirmation of SARS-CoV-2 infection “My work decided … [I] didn’t qualify for short-term disability. From the loopholes of their crap system. [Workers’ Compensation Board] said it was too bad cause I never had the positive [confirmation]. Cause there was nothing.” (F5) Denial of benefits and insurance coverage on the basis of diagnosis “An internal medicine specialist concluded that my symptoms were due to my depression and anxiety solely, so basically … that was the writing on the wall, so I couldn’t challenge that … I could challenge that diagnosis I guess, but I don’t know how I would do that, so that basically wrote me off for long-term disability.” (F8) Surveillance by insurer “Disability’s like, ‘Well, where are you at? We need an update.’ Well, I’d love to give you an update. I wish I felt better to give you a positive update.” (F2) Public perceptions “There’s definitely nothing worse than people that don’t even feel that COVID was a real virus…They don’t believe it’s not a thing, like you can’t still be suffering a year later. Yeah, I am!” (F9)
“There’s really little recognition of long COVID in general. There’s a lot of disbelief and the government doesn’t seem to be doing anything to support people and to understand it more.” (F1)Government policies “We are very upset about this lack of information … we can’t get any information. I really blame the government for that.” (F7) Note: CPP = Canada Pension Plan.
Factor Representative quotations Wait times for primary care physicians, specialists and diagnostic tests “Two and a half hours [on hold on the phone] … when you’re not feeling well, and you can’t even get through to your doctor. You’re better off to go down and make the appointment.” (F7) Lack of access to primary care physician “The first year [of having post-COVID-19 symptoms], there was no help whatsoever. Cause my family doctor moved away a few months after I was sick.” (F5)
“I no longer got a yearly check-up. I no longer got regular blood work. I felt like I was no longer being cared for.” (F4)Living in a rural area “I’ve had no contact with doctors except 1 time, and this was probably going on maybe 9 months ago now, pushing a year … . We don’t have the best service here because it’s a small town.” (F9) Need for patient-centred care “You need somebody who is familiar with dysautonomias or nervous system disorders, who looks at the body as a whole and not just go, ‘Okay, you have a heart problem, go to a cardiologist. You have a headache, go to a neurologist,’ right? They’re just looking at it from a 1 system perspective, they’re not looking at it from your whole body and no one’s talking to each other.” (F1) Coordinating appointments with multiple health care providers “I have, like, 10 different areas of the city I have to randomly go to and find.” (F5) Difficulty accessing services “He just kept deteriorating and the doctor said call 9-1-1. Called 9-1-1, they said we’ll be there, and then 5 minutes later they called back and said, ‘We’d prefer not to take him, it sounds like he has COVID, and we don’t want to expose our paramedics to COVID. Can you take him to the hospital?’” (F6)
“It’s just so hard to get anything here. It’s all cost cutting. You’re not dying, they’re not gonna do it.” (F4)Inadequate communication between providers “When I first saw my family doctor, I had asked her, ‘Did you get the report of what happened in the hospital?’ And the doctors don’t even get a report.” (F2)
“What I’ve seen in all of it, after seeing an ENT, a dermatologist, an allergist, a neurologist, a hematologist, none of them are connected. They don’t have any communication.” (F4)Inadequate standard of care in hospital “Once I left the ICU … you just kind of got thrown in a room and you never saw anybody. I never saw anybody to come up to assess my oxygen. I never saw physio come, I never saw anybody come up there.” (F2)
“They left me in isolation — because I had a mild sore throat at the same time. They left me in isolation for 4 hours. Wouldn’t let my husband in with me. No one checked on me. And my blood pressure was super elevated. So, the standard of care is nonexistent, really.” (F4)Lack of follow-up “It’s like when you get let out of the hospital, you’re just let out to the wolves. And you sit at home and you’re like okay, the first month, I know I’m ill, I know I was really ill, you gotta get better. But now what? What do you do to recover? Who do you talk to? Who’s gonna help you?” (F2)
“Nobody’s phoned up, nobody’s ever followed up with me. But again, I’ve never followed up with anybody either. So, it’s kind of, they give you the start and then they kind of just vanish.” (F1)
“When I contacted my family doctor and said ‘Hey, things aren’t going away’ and he said, ‘Yep, you probably have long COVID.’ And that was it.” (F2)Lack of access to long COVID interdisciplinary clinics “There is a long COVID clinic in Toronto, but first of all I can’t drive that kind of distance now, and … their wait-list is literally 2 and a half years. So what good is that going to do for me?” (F6)
“I feel like there needs to be COVID recovery specialists.” (F2)
“Something along the lines of the multidisciplinary assessment. Where you can get a neurologist in the room and the physiotherapist in the room. Get everybody in 1 room. I talked to my family doctor, well then she’s gotta send a letter to the neuro. It’s like okay, can’t we all talk at 1 time in the room? I would like to have a few experts at a table at a time.” (F3)
“A 1-stop shop probably would be the best way to do it is have a COVID long haul assessment clinic where you have a respirologist, maybe a cardiologist, a rheumatologist.” (F5)Note: ENT = ear, nose and throat specialist, ICU = intensive care unit.
Factor Representative quotations Perceived lack of effort “My family doctor was supportive, but she had nothing she could do for me … . She validated that, yeah, this sounds like long COVID, but there was never any attempt to do anything else for me.” (F8) Feelings of abandonment “We go to them for the answers, right? We’re looking to them to help us and they’re not … . But I just felt like I was left alone to deal with everything. [Crying]” (F4)
“Just imagine you’re in the middle of the ocean without a life jacket and you’re struggling to keep your head afloat. And a boat comes by and start clapping at you and says, ‘Man, you’re doing a good job,’ and drives off. That’s sort of what I feel like right now.” (F4)
“We’re drowning and we are alone.” (F6)Expectations that providers know the answers “Physicians here are not equipped to deal with this, and I know we don’t know what we don’t know, we’re living in real time, but it’s frustrating as a person when they’re supposed to be the experts.” (F9)
“They kind of ameliorate things, but you know, no one seems to know anything about really getting down to how do we cure this.” (F8)
“Nobody ever gives you the process of these are the steps to take.” (F2)Feeling disbelieved “My family doctor doesn’t believe me that I have it at all. ‘Your tests come back fine.’” (F1)
“My biggest frustration is my neurologist right now. I don’t think he believes me. I don’t think he believes that I have the headache I have … oh man, how am I gonna convince this doctor that I really do have headaches? I don’t know.” (F3)
“You can almost hear them or see them rolling their eyes in their head.” (F9)Concerns dismissed “I still think he’s a wonderful physician, but feeling like I was written off, when I came in, ‘It’s all in your head, you’re immune, you’re good to go, you’re not sick anymore,’ but I don’t feel well.” (F10)
“When I was talking to him over the phone and trying to go through these issues, he basically said, ‘This conversation’s been on for 15 minutes, it’s been going on too long’ … It really left me …, basically just feeling defeated. What do I — I don’t know what to do?” (F9)
“I felt like they don’t really want to talk to me anymore because I should be better by now, but I was like, ‘But I’m not, I’m still running a fever of 39°C, I’ve got diarrhea, my head hurts, all I can do is sleep.’” (F10)
“I’ve been on my own and the doctors have done nothing but gaslight me.” (F6)Process Representative quotations Grieving losses “I’m missing out on being a mom, like for my 18-month-old. I can be a mom, bits and pieces. I’ve missed out on so many activities.” (F1)
“I feel life COVID … has taken the simple things in life I used to enjoy away from me … The overwhelming feeling that all of us have is that we miss our life.” (F6)
“I’m stupider than crap now compared with how I used to be.” (F5)
“It’s very sad and depressing when you see the life you have now compared with the life you had pre-COVID. It’s not the same.” (F1)Considering the prospect of permanent disability “Some of the questions my mom has posed to me is like trying to get me thinking about what happens if this doesn’t go away. What happens if I’m at 60% forever?” (F2)
“I’m coming to that, that I’m going to be living with this. I think I have to learn to live with it. I just don’t know how.” (F3)
“Basically, my symptoms have progressively gotten just very, very gradually worse the whole time, so this is 2 years on.” (F8)Adapting to changes in energy and function “I decide not to participate in a conversation. If I’m not 100% sure what’s going on, then I just don’t say anything. And that’s not like me … it’s like oh, I don’t know if I got that right so I’m not gonna say anything cause I don’t want to look stupid.” (F3)
“I used to be a voracious reader. I find now that I can read, but I don’t retain it, so I read 3 pages of a book and if somebody asked me, ‘So, you know, what happened in those 3 pages,’ I couldn’t tell you, so there’s just no point in reading anymore.” (F10)
“I’m just trying to live life normally right now and it’s not been easy … I’ve always been at 120% … . And I was always going and never stopped.” (F2)
“When I was home, I was pacing [activities], unknowingly. But when you go into an environment where you cannot pace, and on top of it, the physical stress of not being able to pace and stop.” (F4)Living with relapses “I woke up and I thought, ‘Oh, gosh, it feels so good to feel myself, I feel pretty good.’ The little getaway, the greenery, the nice, hot sun, it was great. Well, I did a bunch of stuff around my house that I’d sort of let go, and by 3 in the afternoon, I just felt like a truck had run over me, and that’s what I have trouble dealing with, that I’ll have a day or 2 where I sort of feel like myself, and then the next day, it’s just like I — I just feel horrid.” (F8)
“It cycles. You’re good for a couple of days and then I walk too far because I’m trying to get more exercise because that’s what my doctor said to do, and it sets me back for 2 days, your joints hurt, it hurts to sit, it hurts to stand up.” (F10)
“First days in a month that I had not had a fever. And I actually — I was able to sweep my kitchen floor and I wiped down a bathroom, and those were huge victories for me. Then, the fourth day, first day of no cortisone and I was back to a fever of 104. And couch bound again.” (F4)Maintaining personal safety “My group is still very small. I see the same 1 friend.” (F2)
“I remember my parents’ anniversary and they really wanted everybody to get together, but I was still being really cautious about being around people without masks on.” (F4)Transformed identities “I have always defined myself for working and volunteering and being there for everybody else, and now I can’t, and it’s been very hard for me.” (F6)
“I feel like I’m nothing like myself that I was pre-COVID.” (F2)
“I would consider myself an extrovert and I think have become so much more introverted in the process of this, you know. The thought of spending time with other people is difficult for me right now.” (F7)
“It’s just been so long already that sometimes now, you just live with it. I’ve just had it for so long that now it’s just kind of me.” (F1)Adopting new self-care strategies “I know a couple of people have mentioned going vegetarian and vegan. I am not sure if I could do that, but I almost think I need to change my diet too.” (F3)
“Even with my pain, I do all these things, all these exercises, all these extra things I’m supposed to do.” (F4).
“Word findings, crossword puzzles, I was trying to keep my mind active and the other thing when I was really stressed, I started just listening to classical music, no other music.” (F6)
“No matter how much I was trying to sleep or how much sleep I was getting in the night, I wasn’t getting a good rest, and after I think about 3 sessions of acupuncture, I finally got a good sleep and it felt like the difference between when you have a dead battery that won’t take a charge, and then having a battery that can recharge and plug it in, it was that kind of difference. I just felt recharged again and able to sense a big difference after that in my energy level.” (F10)Taking charge “I would have never thought of mast cell activation if I hadn’t gone to that [support] group and then it turned out that the doctors agreed with me.” (F5)
“You put together your own team. I think that’s the only thing that works because I don’t have access to a long COVID clinic.” (F6)
“I thought, ‘Okay, well, self-advocate. What can I try and do? Let’s try some acupuncture, let’s try some therapy, the naturopath,’ and I think there’s been some good results at that, but taking 40–50 different supplements a day — I can’t stomach taking all these pills.” (F10)
“She was a young emergency doctor filling in to do this assessment. Took 5 minutes and didn’t — hadn’t even read my chart, didn’t look at my echo result. Was just like, ‘I think antidepressants are the answer.’ … I was like, ‘You absolutely are incorrect and this isn’t a depression. You know, I’ve monitored my heart rate, monitored my oxygen. And it’s almost like POTS-like symptoms. I’m like, I’m not making it up in my head.’” (F1)
“[Participant asked] ‘Should I do anymore tests or is there anything I can do?’ [Physician said] ‘No, just rest. Keep on doing what you’re doing.’ I’m going to put my foot down on Friday and try to get more answers, but I’m still at the beck and call of the health system.” (F9)Acceptance of a new normal “For me, it’s not over yet. I don’t know when it is going to be. It’s getting better, but it’s not over yet. It may never be over.” (F7)
“If this is my new me, I’m learning to live with it … I can’t do much physically and I can’t do much cognitively … coming to understand that right now, this is my normal.” (F1)
“How you feel about yourself [is different]. Your energy levels, all of those kinds of things. It’s a different normal than anything that you ever had to deal with before … but you have to start accepting this is what you’re going to be living with.” (F2)Finding hope in milestones “I suspect that [my energy] just isn’t going to come back at this point, because it’s been this long, but I’ll keep working on it. I will, I’m going to just keep pushing because I mean, there has been, you know, very tiny, baby step kinds of improvements all the way along.” (F7)
“A lot of the people said that once you’re able to do your regular activities, so if you can get up, get your son to school, make lunch, have supper, do the bedtime routine, once you can do your normal activities at home, that’s the standard of when you can try adding on more.” (F8)
“I was happy at 5 months when I started eating again, got my appetite back.” (F5)
“Because I sing … I’m in a band. I find singing, interestingly, a very great exercise for working on gaining back some lung capacity because you really, really have to work on sucking a lot of air in when you’re singing all the time … so that’s kind of a bonus. I didn’t realize that it would make that kind of difference.” (F9)Optimism “You just have to have faith that you’re going to get better.” (F6)
“I’m trying to remain positive, trying to hang in there.” (F2)Finding gratitude “There are so many things to be grateful for, honestly. All the little things I kind of celebrate. Some of the brain fog has lessened, and compared with where I was, say a year ago, there’s huge improvements … I feel like I shouldn’t complain because I lived when I didn’t think I would live.” (F6) Note: POTS = postural tachycardia syndrome.