You keep it all in

Interesting isn't it, the way other people see you.

After my recent unexpected blurting out of my diagnosis and my conviction that I go on about MS just a bit too much, it appears not everyone thinks the same.

I was having a brief text catch-up with a friend who lives nearby, but who I haven't actually seen that much of in person this year.

I mentioned that I hadn't really felt well since March and they texted back with condolences and the reassurance* that no one would notice. They added that they didn't think I'd want it any other way.

And that surprised me - on two counts.

Firstly - and admittedly I'm speaking as someone who lives in this gradually declining body - I assumed that people would notice.

I do have to stop and sit down (or even lie down) more often than I ever used to before I can face the next part of the day.

I have had to rely on others to drive me around, I've had to turn down invitations from sheer exhaustion and while I have managed to keep working, it's been at quite a cost.

So is it that I've become a real expert in covering up? Is it that the changes aren't always easy for others to notice? Have we all just got too much going on in our own lives?
Or is it - if we're completely honest - that we don't always want to see?

Secondly, is it right that I wouldn't have it any other way?

Is that the impression I give? It may well be.
Or is that the impression that makes it easier for everyone else? It may be that too.
And if it's an impression and not the truth, then who am I lying to most?

It should be no shock to anyone that disabled people are still struggling with other's perceptions of them and I think this is particularly true for chronic, progressive diseases.

We've been one way for a long time and now we are gradually becoming another. We are striving to be the person we always were, but we are battling against something determined to thwart that effort. It's no wonder that we're confused, exhausted and almost continually grieving.

It's very hard to admit to yourself that you can't do what you used to, it's very difficult to explain it to others who have only seen the impression you are used to giving.
And I suspect I project that image because I am frightened of the person I am gradually becoming.

If I honestly think about the way I have managed my 15 years with MS, I don't think my friend was wrong on either of their points.

But I do think it's perhaps time I reconsidered the way I talk about my disease.

:: You keep it all in by The Beautiful South

* Is it a reassurance? And who is it reassuring?