"Fighting with a Ghost Called Psoriasis" by Nikki

Nikki previously shared her story with us, now she has shared this piece of writing based on her experience of living with psoriasis.

Living with psoriasis all day everyday is like Fighting a ghost.

People tell me I'm mad when I say that but they don't know that it's true. Psoriasis will disappear and reappear like it has the invisibility cloak from Harry Potter. It'll sometimes give you a sign, a small plaque or 2. Or it'll let the whole beast rip. Mentally psoriasis drains you from the emotions and the unknown. "How do you not know?" I've been asked, "surely it gives you a sign?" What do you mean a sign? Is it standing on the pavement saying "I'm coming for you"? It's intimidating enough please don't give it ideas.

I talk about my psoriasis like it's a person because at some points in my life it was only me and my psoriasis. It's like an annoying best friend that just clings to you and suffocates you until you can't breathe and then you pass out from exhaustion. I'm not tired from no sleep. Okay, well maybe a bit that but most of the time? I pass out from having to keep fighting, my body wants to fight the war but I grow weaker everytime. My family step in but it kills them to know that there is nothing they can do. My friends all give me sympathetic looks as if I have developed a horrible illness and I'm on my death bed. Strangers look at me with disgust sometimes mixed in with rage when I walk down the street. They don't mean it. Kids will point and stare and ask their parents what happened to me whilst the parents are rushing them away muttering curse words under their breath. Like I said. Ghost.

I've been asked what's the worst thing to have been said to me, where do I start? My own parents telling me I'm too much work? How about school? The kids saying "Don't touch her, you'll get what she has," and running away laughing? How about high school? Girls walking in with full faces of make up and often flawless skin, what about when they asked me what it was and if I'd got burned in a fire? Or is it the woman who asked me to get off the bus because I was scaring her child? Or was it the woman who told me aged 22 to wash more and my skin wouldn't flake? Where do I start? The comments flood in and keep flooding, everytime I'm shutting down more and more. Asking for help seems pointless now. No amount of treatment and therapy is going to help it. It may calm down but it'll grow immune and come back stronger.

It's like Lord Voldemort with the Philosophers Stone. It'll work but at a price. My body is the price. My mentality is the price. My will to live is also the price. I want to stop fighting I'm tired and I'm done how much more can one human take? My psoriasis is inside, it knows the damage its doing from the inside out it knows my weaknesses and it will take full advantage I don't want to see the hurt look on my mum and brothers face again please don't let it get bad again I don't want to go back to hospital. Younger me is screaming and crying every day trying to understand why no one will be her friend no one will even look at her during a flare up they're too ashamed or too horrified or don't care.

Fighting a ghost is tiring, fighting for justice that's never going to be made is just as tiring. If I rest, it wins. If I don't, I lose. It's a lose lose and a war against a ghost isn't worth the hurt. But that ghost is all I have against society. The ghost wants to be seen and heard, you don't realise by silencing it... I'm the one who pays.