Article Figures & Tables
Tables
Variable No. of participants
n = 10Gender Woman 8 Nonbinary 2 Self-identified ethnicity White/European 6 Indigenous 1 Filipina 1 Multiple ethnicities 2 Born in Canada Yes 10 No 0 Geographic location Urban 9 Rural 1 Socioeconomic status (Measured by asking, “How often do you struggle to make ends meet?”) Never or rarely 4 Sometimes 3 Often or always 2 Missing 1 No. of diagnoses 2 1 ≥ 3 9 Co-occurring mood or anxiety disorder Yes 8 No 2 Years living with chronic illness ≥ 5 10 Theme 3: Recommendations to avoid medical invalidation Seeing the patient as expert of their own experience “Believe your patient, we’re coming to you for help … You’re the one that studied for this, yes. We’ve spent our lives in a way studying it ourselves because we live with it.” (P4) Recognizing that the patient’s experience is real and impactful to them “I felt that’s something that we would all appreciate if health care workers took that idea and respect people’s — even if it’s — let’s say you have schizophrenia and you have — you’re explaining something that isn’t happening in real life, but to you it truly is happening — give people the respect of understanding that truly is an experience they have. And even if you can’t do anything for it, just saying, “OK. It’s here. There’s nothing I can do for it, but I understand it and I’ll listen,” is going to help. (P14)
“Recognizing that perhaps they don’t think that it’s real but recognizing that it is real to us and that it should at the very least be taken into consideration.” (P8)Practising humility, empathy and compassion “And what [other participant] was saying about the, like, “You’re not in that much pain,” yeah, it’s like, how dare you get to say that. Like, unless you literally have been dealing with the same — but even then, every person is different so you can’t and that’s where the empathy thing comes back into play … I would say radical empathy, yeah. I mean everything else kind of falls into place once the empathy part is there.” (P9)
“I think for me it’s just, like, be humble. Like, there’s nothing wrong with acknowledging that you’re a human being and there’s no way you know something unless you’ve experienced it or unless you’ve learned from someone who has experienced it, or unless you’ve learned from someone who has studied it, like, that kind of thing.” (P6)
“And, yeah, it just seems like we’re always looking for that like-mind where it’s, like, maybe you don’t know but let’s figure it out and let’s do something … .” (P8)
“I totally agree. That’s more reassuring to have someone to try to figure out what’s going on instead of just say like, ‘Yeah, I don’t know. I’m not going to help you figure it out’ kind of thing.” (P7)
“I think empathy is something that a lot lack and whether they have the resources or time or whatever to put in, if someone just honestly told me, like, ‘You know what, that sucks. I can’t do this for you but, like, I can do this or this or this,’ or just being there. Like, I had a doctor recently and he gave me an honest, like, ‘I don’t know what’s going on but, like, why don’t we try this,’ but it’s like, that’s all I wanted. I don’t need you to give me the world, I just want you to understand that this is hard.” (P9)Helping them help you by finding common ground “Maybe just some education around how, like, a lay person who’s not trained in the medical field might describe an illness or a symptom. Because if it’s not — if we don’t use the exact medical jargon that they’re looking for then they completely write us off. And that can be really, really harmful.” (P6)
“I think it would also be helpful if doctors told patients how to collect data to help them help themselves. Because I come from a family with a lot of STEM people and so if they would help me get in the brain of a doctor, or someone who looks — needs to look at all this data to give a diagnosis, that’s how I got my diagnosis, because I tracked literally everything and I presented them … I was, like, this is what I’m experiencing. So doctors could tell their patients how to collect that data that would be super helpful, because I only knew how to do it because my mom figured it out through research.” (P6)
“Yeah, instead of doctors just saying, just track what’s going on. It’s like, but how? Tell me the information you want.” (P4)Seeing the whole person “I think the thing that I want people to take — or the doctors to get — is just that they need to take the time and they need to listen. That’s it’s kind of like each person is more than just a patient. Because we all could describe — each person’s experience as a patient are just — we’re all individuals — it’s all different. And it’s all of — I hate the labelling and I hate the box — we don’t all fit in the box. There’s so much more. And it’s — they really need to take that time and listen, instead of just putting you in the box and giving you that diagnosis and this is you now. They forget — how there’s so much more to you.” (P3)
“I’ve seen a lot of improvement with doctors lately when I’ve seen, like, this new allergist and I’ve seen some other new doctors, and [they’re asking] do you have any treatment plans? Do you see a therapist? Which I think is very good that they’re asking that because it’s all interconnected, like the body is one system, like your physical health feeds your mental health and your mental health feeds your physical health … like, and you’re dealing with — if you have chronic pain or chronic [illness] when you’re in the thick of it you literally, like, can’t see out of the tunnel, and then it — you start getting more depressed and then when you start getting more depressed you can’t do the things that make you feel good. And it’s just a spiral.” (P4)Note: STEM = science, technology, engineering and mathematics.
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