Before we start, it would be crass to compare sharing that you have MS to declaring your sexuality in a world that, in places, is still hostile and where many still face persecution.
Our topic today, as you may have guessed from reading the subject line – well done you! – is coming out as an MS-er. Such fun!
Let’s start from the beginning.
Immediately after diagnosis, I think like a lot of MS-ers, my initial feeling was relief; I’d already figured it out myself so the neuro was just confirming what I already knew. So I had my ‘told-you-so’ moment. Silver-linings…
Breaking the news to family and friends is an odd experience. You’re both the bringer of bad news and the person who comforts them as it sinks in. I remember being quite nonchalant about it: “yeah, it’s MS but, you know, it’s not a big deal – not a real disease like cancer – I’m fine. Let’s talk about you instead.”
It took me far longer than it should to appreciate the seriousness of it. As I’ve said before, MS is a devious bastard and I’m quite stupid. That’s me in the corner, that’s me in the spotlight failing to accept that I’ve got a moron chronic illness. Lousy.
I’m getting off topic. Digressing. Deviating. Straying from the path.
What was I talking about? Oh yes: coming out.
Initially, I avoided telling people. Why would I? I had a sense of shame about it. Like it was just typical of me: You have MS – Oh Ema, what are you like?!
I was embarrassed. I didn’t want to be seen as an ‘ill’ person, a person who was weaker, somehow less than ‘normal’ people. I didn’t want to join the mass of the unwell: the stumblers; the people who walk with sticks; the wheelchair users; the shakers; the people in the street that you look at for far too long; who children ask their parents questions about, in voices that are far too loud to be considered polite. Those people.
Of course I realise now how ridiculous, let alone offensive, that point of view was.
Part of it, I think, is the total lack of knowledge most people have about MS. Why would they know about it? I remember one person that I told, in a professional context no less, saying to me, “isn’t that the ‘yuppie’ disease?” – confusing it with ME, I presume. I wish I’d been more strident in my reply rather than retreating into polite embarrassment. Anyone who knows, really knows, would never, ever say that.
After my ‘devastating’ relapse, I’ve found myself coming-out all over the place. As it were. It’s pretty much become the second thing I tell anyone, after my name.
Realistically, most people don’t need to know. I think I’ve started to leak the information so incontinently because I feel obliged to offer explanation for why I’m walking kind of slowly, why I’ve let someone pass me on the stairs, why I really really need to sit down for a bit.
A mini-flashback. In a shop with my Mum at the beginning of my long recovery, she overheard me telling the person at the till. Afterward she said to me that it was the first time she could recall hearing me saying “I’ve got MS.” I don’t know what that means. Well, I do. Something about acceptance?
I think I’m finding a balance now, between spurting it out haphazardly to anyone who has the pleasure of stepping into my vicinity and shrinking in opprobrium at the very idea of telling anybody.
So that’s my post about coming-out as an MS-er. You’re welcome. Are those for me? You shouldn’t have! Silly.
More MS-capades soon.