One of my biggest fears in having this op was actually very vain. I was worried about losing a chunk of my hair, which I’ve only recently learned to love, and how I might go about hiding it.
However, my fears were unfounded. Post op I realised that I have so much hair that you really can’t see that I’ve lost a quarter of it. Yet, even though I know I can cover it, I’ve noticed I’ve worn my hair up the majority of the time. I feel a sense of pride over my close crop and Frankenstein scar. It’s like a badge of honour, something that is the result of a surgery that I believe has saved my life. Of course I should be proud of it.
But now my hair is growing back at a rate of knots, as it always has, and I find myself constantly checking it and feeling a little sad when I see it covering more of my scar. Like once again this illness I have and the battles I’ve fought, just the entire ordeal, will once again be invisible to all but those who know.
People may see my chest scar and assume I have a pacemaker. Or maybe even that I’m the sort of person who may get herself caught up in knife crime. But I’ll in fact just be a woman balancing her life around an invisible illness that most people won’t ever get to know about or understand. I’m grateful it’s a rare condition, no one should ever have to experience the pain and all the autonomic symptoms that come with it. But, as someone who does know and understand just how unbearable the pain levels a human can endure are, I wish more awareness existed without an increase in people having the condition itself. I guess that’s why I subconsciously expose my head scar with pride; because it opens the discussion. It raises awareness of just how chronic a ‘headache’ can be to take such drastic measures.
I suppose that’s also why I write here too. In the hopes that someone, somewhere, might take something positive away from my experiences. Not just with this condition but with everything I’ve endured and overcome, against the odds, in my 30 years.
So, for now, don’t worry if you catch me swishing my pony tail to the side – I’m just showing the world I’ve got big brass balls while I still can.