do you know that skinny sick girl?

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I don’t know how people think and talk about me, mercifully.

Perhaps I am ‘the sick girl with CFS’ in their minds, or ‘the hypochondriac’ to the less convinced. As a girl who was serious about ballet, I was ‘the dancer’ but at my ballet school where all were dancers, they thought of me as ‘the home-schooled girl’ or ‘the kiwi’. I’m glad it wasn’t ‘the acne face’ which would have been equally apt for this period in my life. When I spent all my time studying the flute, I was the musician and I think I defined myself the same way. Perhaps the field to which a person devotes the majority of their time, or an uncommon background or physical feature are the means by which we generally distinguish one person from another. Whatever characteristic stands out from the rest of the flock makes for an easy distinction and label. It takes year to get to know someone, and hours to give an accurate description of that person, so naturally we need to simplify all that complexity and boil it down to a simple key point. A simple key point which can never do anyone justice.

Be our label flattering or insulting, we run the risk of limiting ourselves if we choose to live by it. 

Whatever it is, it’s just the tiniest glimpse of who we are, and sometimes it’s not even that, it’s an incorrect perception.

Some days I lie on that detestable olive couch and think,

“Yes, I am the sick girl. I spend all my time being a patient, and it’s what separates me from everyone else. All I am is a frail, incapacitated woman with dreams in shreds and a hopeless future.”

And believing myself solely a useless body, I don’t strive to rise above, or challenge myself, or grow. I curl up in the invalid’s box, squashed by my inaccurate and simplistic labelling. I literally consider myself ‘in valid’, and somehow a burdensome blot on society. 

That’s what it means to be defined by my illness. 

Watching the Paralympics, I am inspired by the disabled bodies, and the men and women inside those bodies. They must have all hit that point in their lives where they thought,

“Who am I? A paraplegic, or a talented individual, who has a passion for sport, for advocating for injured people, who loves my partner, who gets a thrill from taking great photos at the beach, who has no legs...”

They put their disability low down on the list of key facts about themselves. They choose not to be defined by that detail. They use what could have been their most limiting weakness to be their greatest strength; they challenge themselves to make a difference despite their circumstances.

Inside, I am exactly the same as I was before I became ill, the real part of me remains intact and continues to grow. I laugh when I trip over, dance in front of the mirror, feel up lifted when I play classical music, cannot put down Jane Austen, wake up thinking of things I want to make, love to talk with people about more than the weather, wish to write a book which people actually read or earn a living from being an artist, want to be an awesome mum who gives great hugs, try to use my gifts to make this world a tiny bit more beautiful or bearable, want to do it all for my creator. 

P.s. I also have CFS. Just a tiny yet formative detail I thought I should add in there.