Advice for people with a long-term conditions or disability
Interview excerpt: Charlotte describes the difficulty of getting help when she was already very unwell.
© Disability Narratives
But I think I'd probably pushed myself too far already by that point. I wish I could say - oh, I should have learned about this person, this resource in the university, to go and talk to - and that person would have sorted it all out. But you know, I just think when you're in that state of being utterly discombobulated - I love that word - by [laugh] your own ill health, and feeling so poorly [sigh]. I mean, if there was one point, I mean, I guess Caroline [Disability Support Officer] [laugh]. But then you've got to identify that's what you have... You know, I feel like I went to all the people that I thought I could go to ask for help. Or who I thought were there to help me. You know, my immediate line manager, personnel, occupational health, the union. Who else was I supposed to have asked? I can't really think of who, you see.
Or what I could have done differently, in that sense of, would it have helped if somebody gave me a booklet and said "These are the university's regulations on this, that and the other, relevant to you being off sick." Well I did look it up online obviously, but. I mean, how much of that are you taking in? You know, you're ill. You can't, you can't - you know - You can barely concentrate enough to get through the day, how are you going to absorb - you know - that amount of dense information about in bureaucratic speak about your rights? And it's all - it's also written in a way that isn't [sigh] - It's not that it's not accessible, it's just written in a way that doesn't really - it has to be general, right, it can't be specific to you.
So, so you're kind of rely-relying on actual people to guide you through what this means for you. And if they don't do that very well, then - and you don't have the wherewithal because you're ill, to figure it out yourself by reading up on it and asking questions - how do you ask questions about things you don't know that you should ask questions about?