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.