I am 30 years old. I am tall, relatively healthy, able bodied and apart from what I like to call “the world’s longest list of significant health conditions that affect my life in no significant way” I am absolutely fine.
So why am I writing this?
I am staring down the barrel of a diagnosis that may see me categorised as having Marfan Syndrome, an issue with the connective tissue. A disability.
But… I’m not disabled.
I’m struggling to deal with this. I feel like a fraud. Imagine if someone who had never experienced mental illness came up to you and told you they knew exactly what depression felt like because sometimes they got sad too.
At best a bit naive and at worst a little offensive.
Well, that’s how I feel if I describe myself as having a disability. Or, rather, possibly having a disability. I don’t consider disability a bad thing (and inspiration porn can kiss my ass), it’s just not something I have.
I have friends who have disabilities that impact their lives. But this wouldn’t affect mine.
In fact this diagnosis would change my life in no way at all – I already have all the conditions diagnosed that have led us to this conclusion. All those things are being treated.
So what difference does it make if I consider myself Marfans or not?
It kind of doesn’t. Except for the label. The fear that I am being insensitive. Being a fraud.
I read a recent article by my friend Carly Findlay (who, side note, has been an exceptional rock for me through this) about Othering and the penny dropped.
Isn’t it funny how sometimes being afraid of something results in doing exactly what you’re afraid of doing?
In my haste not to label myself something other people might consider offensive, in my haste to be considerate to those who have a disability, I’ve ‘othered’ those who do fit that label. I’ve said: But they’re not like me.
Only they are. They’re just like me. They just accepted the label.
Have you ever struggled with a label? Have you ever struggled with a diagnosis?