Full disclosure or ‘It Is What It Is’

Full disclosure or ‘It Is What It Is’

When I was first diagnosed with MS, I was working in a small department of a theatre. I’d been manifesting (and complaining about) various strange symptoms for quite a while, so I told the people who I shared an office with about my diagnosis. But I didn’t really want it going much wider.

A short while afterwards, I had a period when I was working on a freelance basis for several cultural organisations. Again, I didn’t feel the need to tell everyone I came into contact with, but I always made sure that at least one person I worked with knew about my situation. Anyway, applications were by Curriculum Vitae and informal interview, so there was no opportunity or need to tell.

I think a lot of this was down to a need to keep some kind of control – plus I was probably in the ‘Denial’ stage of the process.

When I applied for my current job, the application form had this question:

Do you consider yourself to have a disability?”, with a “Yes / No” tick box.

Being in the ‘denial’ stage (and only being at the start of a steep learning curve), I ticked ‘No’.

At the time I didn’t actually consider it a disability, plus I think that – at the back of my mind – I was worried I would be overlooked if I disclosed too soon.

Anyway, I got the job and decided to tell my boss (who I share an office with) on the first day – pretty high risk but he appreciated being told. And things went just fine until a year or so later when I had two bad relapses in fairly quick succession.

The extended periods away from a small organisation couldn’t really be brushed under the carpet, so it was decided that I would tell everyone at a staff meeting.

In my head I had a perfect vision of how this was going to go – ladies sobbing and offering hugs, men fighting back tears and punching me on the shoulder. Well, this wasn’t perfect – the only person in tears was me.

Now I can talk quite dispassionately about ‘demyelination-this’ and ‘steroids-that’ for hours. But when I had to look everyone in the eye and say, “this is what this is“, I lost it completely.

Take my advice – if you’re going to do this, make some notes beforehand. Or read pages 4-13 of the MS Society’s Working Yet Worried toolkit I linked to in an earlier post.

Since then, and especially since my last relapse, I’ve been pretty vocal about my condition – I’ve appeared on local radio to talk about the UK MS Awareness Week and my work, I blog under my own name here, etc. And if the question ever comes up (“what’s the walking stick for?”), I tend to just get it out in the open – I mostly work with nice people who are genuinely concerned, so I don’t say it in a way which might make them feel bad.

The line I tend to use is, “I’ve got MS… it is what it is”, which is a little bit flippant. But what are the other options?

Recount the days spent 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 anyone?

Sometimes if it’s a social event I can get a bit of confession-fatigue – once I was asked five times within 30 minutes. After gently laying it out for two people (responses: disbelief, tears), I fudged it for the next two and ended up making a joke of it for Number 5.

When and whether you should disclose your condition to your employer and colleagues is an entirely personal decision for each of us to consider.

But once it’s out there you can’t ever get it back in the bag. And you might even get addicted to ‘coming out’ of the closet and become ‘that annoying guy who’s always banging on about his MS’ (i.e. me).

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