Why 'How Are You' Is the Most Difficult Question to Answer With My Rare Condition

“How are you?” has become the question I fear the most.

360 days a year I have consistent, unbearable pain in one part or another of my body, thanks to my incurable and progressive neurological Charcot-Marie-Tooth disease. I feel claustrophobic, trapped in my own body and often find myself lying when someone asks me how am I doing.”Very Well.” That’s my default answer to anyone who asks me, “how are you?” This is like a recorded answer on my answering machine, like a default Whatsapp status which I haven’t bothered to change for the longest time.

A few years ago, I used to tell people that I am fine, or doing well, or would end it in just one word: “perfect.”

Play this conversation in your head.

How are you?

Perfect.

This might sound arrogant, but it was my way of telling myself that even if I looked nowhere close to what a “normal” person looks like, I was perfect in my own way.

However, over the years, since I have grown up along with my pain and disease, the easiest question in the world has now become the most difficult.

How am I supposed to tell people every day that I am not fine, or even close to it? For three days last week, my leg was hurting and for two days now, my wrist is killing me.

How do I explain this to my colleagues, or my friends who ask me how I am? Or my parents who are sitting miles away? My parents know I might be in pain, but hearing that “I’m OK today” gives them a peaceful slumber.

For others I continue to pretend and lie.

It’s been a long time since I have felt well or “normal,” and I can’t say it out loud, as I fear people might stop asking me this question or might start to take me as someone who has an excuse to get sympathy. I understand that while my disease will not take a back seat, people might do so. They might stop asking me this irrelevant, yet most important question to me.

In all of this, comes my fiancé who has adopted a unique way of asking me how I am.

Where do you have pain today?

Nowhere, I reply. Of course he outsmarts me.

Do your legs hurt?

No.

How are your hands?

They are fine.

How is your ankle?

I think it’s a bit swollen.

So it must be in pain as well?

Yes, it does.

He is as stubborn as my pain, as consistent as my disease, and as perfect as my answer to your conversation starter “how are you?”

My family, friends and most of all, myself, keep me going. I remind myself how short life is and how important it is to enjoy this moment, despite dying muscles and inevitable pain.