This was because (and I'm paraphrasing here), my "next relapse is 'in-the-post' and we need to prepare."
(Friends on Twitter might recognise this from a tweet from earlier this year - it has taken this long for us to meet up)
My boss has quite a way with words but I do see it from his point of view: I work for a small not-for-profit organisation and if I have to take, say, 6 weeks to recover from a relapse (like I did earlier this year), then it can be hard to absorb this within the team.
So we talked about a lot of things, about my difficulty with certain aspects of my role, etc and I could tell that my boss was finding this all very difficult. But we came up with some ideas which will help us all - most of them REALLY FRICKING OBVIOUS.
Case in point: we've just completed a massive project, and as part of that we bought three laptops.
Which have all been sat in a room at work.
The idea was mooted that if I had one at home, it might help me to stay in touch and even maybe do some work from my sick-bed during my next relapse.
Like I say, obvious stuff but it was very helpful for us both to have someone independent who could listen. It was kind of like couples therapy in a way, and we both agreed that it was good to talk about some fairly awkward issues.
Anyway, there was a little bit of FALL-OUT from this discussion which I'll cover at a later date.
(oh, the suspense...)
First up, the Equalities Officer is someone that I saw way back in the days immediately after
Relapse 09 - Part Two so I knew she had my back.
At that time, she laid a real mind-blower on me, when she picked up on my feelings of shame and inadequacy following my diagnosis and "relabelling" as a DISABLED PERSON.
She told me about two different ways of looking at Disability:
The Medical or Individual model
(which suggests the disabled person is the problem)
And
The Social Model of Disability
(which shows the barriers are the problem)
Now. This might not be news to you. I'm not the sharpest tool in the box.
But she was able to pick up that I was TOTALLY living the Medical/Individual model, seeing everything as my fault.
Seeing things via the Social model was - and CONTINUES to be - a real eye opener.
PLEASE NOTE
This does not absolve us of responsibility.
If anything, this means WE have to shout louder about the things we need to get by everyday.
Not just whining about the symptoms we all have and acting the victim.
This just makes us seem WEAK, which makes it so much easier for people to ignore us.
Here endeth the lesson.
(see illustrations of both models below - hope these are accessible to all, I'll sort it later if not!)
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ReplyDeleteI've been very lucky with my MS to date and haven't needed any time off. I've always been pretty open about my diagnosis though, and when I got a new boss about 8 months, he was pretty interested. Interested... but sadly a bit thick. He knows that I inject on a tuesday night and that sometimes I feel a bit off-colour on a wednesday, and he'll sometimes bring that up in meetings on a wednesday for no apparent reason - which pisses me off. He also tried to get me interested in some weird Canadian website which has some decidedly wonky theories about illness and how you can treat ANYTHING - including cancer - through diet (or somesuch. I think blood types may have been involved at some point). It's kind of good that he's interested, to a point, but he's so fucking clumsy about it that it makes me cringe.
In the main though, it's an invisible condition, isn't it? When people find out I have it, I get a lot of well-intentioned but ultimately ignorant sympathy and, I suspect, pity. Fuck it. I won't be defined by it. I refuse.
Good post, Steve. FWIW you don't seem thick to me, dude. You like music too much to be thick ;-)
Thanks for the feedback, man! It's very much appreciated.
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