Friday, November 4, 2016

Why I Don't Hide My Illness Any More

The Pretender Mask.

The smile that hides the pain.

The “I’m fine!” on days we definitely are not fine.

The tough I’ve-got-this front when we’re falling apart inside.

Everyone I know with a chronic illness has been behind the Pretender Mask.

Sometimes, it’s because we don’t want to explain our illness yet again. It’s exhausting, especially when the illness is one that doesn’t show on the outside. Invisible illness often leaves us feeling as if we have to validate it. We look fine, so how can we be that sick?

Sometimes, it’s because we don’t want others to worry, or maybe because we just want to be “normal” for a little while. That cashier doesn’t know us — to her we can be just another person, not the sick one. We won’t be interacting with her long enough that she has to see how not OK we really feel as we smile and make small talk.

And sometimes, it’s because we can’t admit to ourselves that we won’t be able to kick this thing’s figurative ass. Oh, we can fight it, yes. But the sad truth for many of us is that’s all we can do.

And it’s hard to accept that. It’s terrifying.

I wore it for over a year, that Pretender’s Mask.

A year or so of acting tough and telling my friends I would be OK, I was going to get better, I’d find that magical treatment.

I’d kick its ass.

I was terrified. I still am. And every time a new symptom crops up or the pain derails my day and confines me, I get terrified all over again.

I haven’t given up hope for a treatment that will help. But now I know and admit to myself that’s all it will do — help. I’ll still probably be disabled and not have a “normal” life (not that I’ve ever been “normal,” anyway).

And for some people, that’s off-putting. They see it as giving up, as settling for less.

It’s lost me friends.

And that hurts.

But what it is is being real and being realistic. I try to be optimistically realistic, and I usually succeed.

And I’m not pretending any more.

Not for anyone.

I won’t shove my disorder under a blanket to fit in someone else’s comfort zone — even my own comfort zone.

That’s a luxury I don’t have anymore.

I’m a fighter. It’s what I do. And I can’t fight something that I’m hiding.

(Originally published on The Mighty. See my author page and other published articles here.)