Challenging Experiences – Zarah


Zarah underestimated how difficult it would be to hear patients partners’ stories about their illness experiences


I think being unprepared for how much – for how difficult it is to hear patients’ stories and, you know, it’s difficult for me to hear it and obviously it’s difficult for the person to live it, but I think maybe that’s something that might need to go into your question about training, actually, is I work hard to develop relationships with the people that I work with, and it’s difficult when the patient that I’m working with has this disease experience and it maybe relapses and has something else, and so there are days that I just feel like really crumby about that. You know, it’s sad and I think in other health care professions there are support mechanisms for that, so physicians are taught about compassion burnout and things like that – nurses and other health care professionals as well – and how to handle grieving and working at the same time and things like that. But I don’t think that we’ve come to that point in research yet where we’re asking people to work closely with patients, develop relationships and trust and things like that, but there’s no support on the other end of like, oh what do you do when someone that you’ve worked so hard to develop a relationship with is no longer with you, or something like that. You know?  So that has been hard – that would be like the negative thing about my job that I’ve had to kind of like reflect on and be like, okay, well I need to create those supports for myself, and so, funnily enough the Patient Family Advisor Program has been a really great place for me to turn to for support, like me as a researcher even, so yeah.


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