PANS and Me

I was 15 when I was diagnosed with PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), an autoimmune disorder that causes inflammation of the brain–and in turn, an array of seemingly random symptoms. At four, I had my first flare-up. Because of this, I’ve spent as much of my life as I can remember feeling different, as if I’m slightly removed from my peers. They couldn’t understand the things I’d been through. I felt alone, and even now, I have yet to meet someone who can truly understand me.

Because how could you know the fear, the anger at nothing–at everything–and the lashing out even though you try to fight it, even though you don’t want to, if you’ve never felt it? How can you know the hunger so fierce it feels as if your stomach is digesting itself, only to be repulsed by food, unable to get it past your lips, if you haven’t lived it? Or understand the restless, wired energy that coils through my mind, sending my thoughts spinning in different directions, wires crossing, short circuiting, until I want to scream. How could you know what it’s like to be completely unable to cope with the unexpected, to turn into a five year old every time you’re overwhelmed, if it’s never happened to you? You can’t. You can sympathize, but you can never truly know these things if you haven’t lived through them.

My childhood is a collage of x-rays and sterile rooms, tears and temper tantrums. My adolescence has seen much more of blood draws than mall days. Some days, I think I’m the kind of person who can only be forged through blood and tears and pain beating hope into submission. Some days, the darkness surrounds me and I wonder why this is a part of me, why my own body betrays me, and I wonder if it will ever go away. Some days I wonder what I could have done to deserve this. And then there are the days I wonder if it’s even worth it, when it feels as if everything is spiraling out of control, and I feel alone even when I’m surrounded by friends and family. But the thing is, every time things crumble to dust around me, I’m left with the pieces to build it back up, into something better. Every time I take a step backward, it’s followed by two in the right direction, and just because I haven’t met anyone like me yet doesn’t mean I never will.

Sometimes you have to be broken, shattered into nothing but shards of glass, to be made into the person you were meant to be.

So, that’s why I’m writing this, why I’m reaching out, starting this blog: to share my story. To help people like me feel less alone and to spread the word of PANS to help those that are looking for answers to what’s wrong with them. Because I’ve been there, I’ve spent years searching, I’ve spent a decade feeling like I’m the only one. But I’m not.