Challenging Experiences – Nicolas (2)


Nicolas reflects on a time when patient partners felt “invisible” even when invited to join a meeting


I remember we came in, in a room like this, and there was a researcher sitting on this side of the table, and three patients on that side. And then — and researchers were talking about their project. It was glomerular — they were trying to get together a registry for sample, tissue samples and so. And they were talking and talking, I didn’t understand anything they were saying. And they didn’t even notice that we came in. We just sat there, and we looked at each other, the patients, and [laughter] and they just kept on going. Occasionally they would look at us, oh yeah, well we’ll get to you in a minute. But they were just talking about a [cue]. “So John, how’s it going with the samples in Toronto? Well yeah, I talked to the supervisor and blah, blah, blah.” They were just getting — they were talking the day to day business of the research project, and we were like — “yeah I talked to John and he can get me samples with that kind of GFR or that kind of . . .”  And we’re just like, so what do we — how do we contribute you know? It just seemed like such a huge wall. I felt like I was in front of a wall. We talk about this, and we — that’s all we talk about, and “we’ll get to you when we get to you.” And so, I felt it was weird. It was strange.

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