Health care provider and relational factors contributing to erosion of trust
| 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) |