Interview excerpt: John finds that it does help to tell people about his condition as it helps them understand how it affects him, but is careful about how much he discloses and to whom.
© Disability Narratives
To be honest, I would far rather people know, than not know. Because particularly when it comes to recruitment or anything like that. And that I - you know. I suppose one of the hardest things I think of living with this, is people not understanding what it, it does to me, and the constraints it puts on my life. And just having at least some kind of basic understanding of that I think is, is hugely helpful. Which is why I'm always just very open and honest about it, and upfront. I think that's for me the far best way of doing it. And if people - you know - you know, think poorly of, of me because they've heard, you know, twenty years ago that this was a psychological condition, that they think that you know, I'm just kind of - you know - a malingerer, or lazy, or whatever like that. I mean, that's their problem [laughs]. To be honest, it's something I only do where I feel it's needed. So certainly at job applications I think it's needed. For, for example [telling] students I don't think it's needed, because it doesn't actually affect them. So it's necessarily something that I would do. It becomes a lot more hazy with things like colleagues. So for example, I would want my [immediate] colleagues to know of this in full, and for me, I think that's part of kind of a reasonable adaptation, is just that I would be able to give them for example, this cover letter with the two sides of A4 just what the condition is, and what it means for me. I would rather that be known to my immediate colleagues that actually have relevance to my work - I'd much rather that be known in full, than not. But then obviously I wouldn't want that to be shared absolutely completely publicly, necessarily, either. So there's, there’s a kind of balance in there that I would want to have full understanding from people I do work with. But perhaps have some measure of control over, who knows about that. And it's a much more grey area with for example friends, and kind of more distant colleagues. And then it's not something I tend to talk about, in fact I tend to almost hide it, kind of on a, on a social level. Because I don't want any, you know sympathy or anything like this. It's just, you know, just something I - it's my thing that I deal with. But it's something that people do find out about once they get to know me better, because then I do talk about it. But it's not something I kind of directly advocate for, and people that I don't know well, I guess.