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Disability Narratives


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Video clip: Gabrielle reflects on the work context within which support is provided by managers and how this affects her understanding of the support that is provided.

Well it was really nice to just think about this stuff, and realise that. What would be useful is - what would be useful for me, because I just - I tend to just get on with stuff, and I haven't been doing a very good job of prioritising taking care of myself, the last few years. And having a think about 'oh, what, what sort of things should I be doing, what should I be thinking about, and what actually would be useful?' I mean, if employers were very clear about an awareness that medical appointments are going to come up, and they're going to come up quite frequently, and sometimes unexpectedly. If I had a blanket statement from an employer that just would say, you know, we know this is going to happen, we know you don't have any control over it for the most part, just take the time off that you need - you know, rearrange your appointments if you need to, but just do what you need to do. I've never been told in my current workplace 'no', like or 'don't do this', but I just - I still feel like I have to ask.

And I'm quite embarrassed about always having to say "I'm really sorry, I know we're having a busy day, but I have to go to this hospital appointment. And they, you know - if I reschedule, it's going to be four months to get another appointment." So just knowing that it wasn't an issue would probably be useful. And we talked already about checking in regularly, and possibly having an extra sort of amount of sick leave available. But I think what really came, became very clear to me, just thinking through all this, is how much the stress levels are important when you have a chronic illness like this. That it's very important for employers to be aware that there's probably different amounts of stress you can put on an employee with a chronic illness than someone who's not dealing with that.

And I think there tends to be a sort of a one size fits all approach. And you may say to an employee with MS or another chronic illness, "You know, let us know if there's anything we can do to help you." But then they're under a huge amount of stress to get their work done. That is actually very unsupportive. And whether - Either being more aware of what's happening, or trying to do things to alleviate that is probably key for me. And that's something I'm going to be very cognisant of in the future, is making sure I don't go into a situation where I'm in an under-staffed workplace. It's just not manageable, I think, for me to be in a position where I feel like I have to run at a hundred percent all the time, in order just to get work done.