The 'Pretender Mask' I'm No Longer Wearing to Cover My Illness


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.

TOPICS
JOIN THE CONVERSATION

Related to Chronic Illness

parents with teenage daughter and younger daughter

What It's Like When You're a Mommy Who's Sick Every Day

“Are you feeling better, Mommy?” This is a question I get asked almost daily by my 4-year-old. I used to just say no, I’m not. She kept asking though, and it’s sweet, but I started to wonder what her meaning of “better” was. So, I asked her, “What would it mean if I felt better?” [...]
The author in the hospital

Answering 'How Are You?' From the Maze of Chronic Diseases

“Hey… how are you, Shannon?” How am I? I don’t think everyone wants the real answer. But here is the honest, scary truth — I’m lost in a maze of doctors who all seem scared to touch me for fear of anaphylaxis or death or that the insurance doesn’t want to pay anymore. It’s hard [...]
Mother and daughter enjoying the view on a lake.

I Have a Disability, Chronic Illness, and Will Make an Awesome Mom One Day

I am disabled. I have medical needs unimaginable to most and I require lots of help medically and practically to live my life as others do. My ill health is complex, fragile and hugely life-impacting. I cannot get definitive answers as to where this will lead, because those answers do not exist. But, I still have what it [...]
Rear view of woman with headscarf sitting on the beach by a rock and looking at the sea

Why I Don’t Want People to Tell Me There's a 'Brighter Side' to My Illness

There is nothing more wonderful than having a supportive and loving family and friend network around you when you battle a chronic illness. I cherish every kind word they said or every wordless gesture that shows how much they care. I have, however, grown sick of the “don’t worry, there is a bigger picture” or “there is a [...]