Thursday, 11 April 2013

full disclosure

The title for this post comes from a phrase I've found myself using increasingly at work.

One recent incident was a disabled audience member for an outdoor event commenting on access; the other was an artist with a chronic illness who is exhibiting where I work.

On both occasions, I've used the phrase in emails:

FULL DISCLOSURE - I'm disabled / I have a chronic illness

The reason for my relentless COMING OUT?

In both instances, it's to show that I have SOME AWARENESS of their particular issues and conditions; plus I appreciate that they might feel uncomfortable stating their issues to a NORMAL so it's easier to know I'm one of them, right?

But in both instances I've felt the need to add:

(I have Multiple Sclerosis)

a bit apologetically, especially with the coy little brackets.

It got me thinking: Why do I do this?

I think part of it is that I'm not THAT (obviously) ill (most of the time) - if my statement stood unqualified and we met, they might feel a bit... I dunno, miffed.

But I do have MS. And it can be no picnic, as we know.

I try to put a brave face on things and be all gung-ho about (for example) bladder retraining and using a walking stick. But I'm human and sometimes the steps I have to go through can't help but shave off a little bit off my dignity.

So I shouldn't really make out it's no big deal - this is a condition which has no cure and no clear path of progression. And I accept that.

But earlier this week I came out to a colleague. And when she said that she was sorry, my other standard line popped out:

"It is what it is"

Which is true but a little bit flippant.

But what are the other options?

Recount the Long Dark Nights of The Soul? The days staring into the abyss, trying to second-guess the particular path my MS is going to take, and the effect it will have on my life and those around me?

What good does that do?

I don't know where I'm going with this post but the whole thing was prompted by a day where numerous people at work FORGOT about my health issues and made RIDICULOUS demands on me - I know, how dare they.

And yes, I can be something of a solipsist. AND I know some people are not so lucky to have such an 'invisible' disability.

But it made me feel like a heel to have to let people down, and I thought I should maybe get a T-Shirt made up:

patented t-shirt design by a man with too much time on his hands... other colours will be available

Maybe the waffling you see is because I have my ANNUAL WORKS APPRAISAL coming up after lunch - no matter how good you are at your job, those three words can't fail to fill you with dread, right? Especially when the last 12 months have also contained RELAPSE12: THE QUICKENING.

No matter - I've got tomorrow off work for my daughter's second (SECOND!!) birthday - seeing as I was up to my neck in relapse and unable to do anything with her last year we're going out for the day.

Surely work can't wind me up enough to ruin that day, can they...???

7 comments:

swisslet said...

I find myself downplaying it when I talk to people, and it kind of inadvertently gives them the impression that I'm heroically stoic about the whole thing. It's bizarre.
I'm keen that I don't *hide* that I have MS because it helps to challenge people's preconceptions of the disease... but at the same time, their reaction often confirms it.
I'd like the t-shirt. In a nice jazzy yellow, I think.

Honeysuckle said...

Maybe on the back, you could write:


THANKS, I KNOW I LOOK GOOD

(and I still have MS)


Hope the appraisal went well and the big birthday goes brilliantly.

Stumbling In Flats said...

Excellent post! Hopefully your employers/colleagues are a whole lot nicer than mine, lol.
And happy birthday to your daughter. They grow up quickly!

Ms. CrankyPants said...

Hope the appraisal went well! And, of course, that you all had a great birthday celebration.

stevedomino said...

Thanks guys - been offline with my ladies all day (obviously - and I'm talking about wife and daughter, I don't mean to sound like some kind of pimp) - appraisal was fine, will probably write more about it later but absolutely KNACKERED now! x

Jackie Z said...

I do this too. Its like I wanna put it out there but not in too much detail.

stevedomino said...

well, i'm glad it's not just me but WHO KNEW?

apparently we're all pretty messed up!