My first patch of psoriasis developed when I was five years old. The disease has been a constant in my life, meaning that I’ve never experienced a full remission in the 27 years that I’ve lived with it. But up until about eight years ago, I spoke very little of my very apparent disease.
For the most part, I avoided discussing my psoriasis. I didn’t even like saying the word. It sounds like you’re saying something with a mouthful of marbles. Try it, “psoriasis.” It elicits an ick factor just from the very name of the disease. And so, for a very long time, I just didn’t say it.
The fact that my reluctance to discuss my disease -- that is as ugly as it’s name -- is blamed on language, is not lost on me. As a writer, language is crucial. Language helps form the way we think, the way we tell stories, and how we process and experience meaning. I didn’t want to say the word and I didn’t want to talk about it.
I grew up in a small sheltered town. I spent my time with the same people everyday, as I had since I was in the first grade. No one asked about my skin – I’m not sure if anyone ever teased me about it. If they did, it hasn’t registered in my memory. People accepted that it was a part of me, and the discussion about it being contagious, etc was unnecessary.
But I left home and went to college – where looks are at a premium – and I suddenly found that I had to explain myself. I’d rush through the explanation, “it’s a genetic skin disease, it’s not contagious, etc. etc.” Sometimes I’d be able to get through the entire explanation with ever having mentioned that the disease that I had was psoriasis. But no one asked questions, and I was eager to quickly move on.
After college, I continued to rush through these explanations with my students, colleagues, new friends and acquaintances. With each of my pregnancies my psoriasis worsened covering most of my face, neck and arms. There was no longer any avoiding the conversation as it now was very, very visible.
I started writing articles for the National Psoriasis Foundation and doing research about how people live with the disease around the world. I held fast to my commitment to go drug-free, to live with the disease, and to not let it dictate my emotional wellbeing. In my interviews with doctors, nurses, researchers, peers living with the disease, I’d have to talk about psoriasis candidly. I had to say it aloud. All of the time.
Every time it’s gotten easier. It’s made me a little more brazen, bold enough to no longer cringe when I hear the word ‘psoriasis.’ Bold enough to stop covering up all of the time. Bold enough to explain it without apology.
The very thing that I’ve avoided doing most of my life – saying this ugly word aloud – is what has brought me tremendous acceptances of its presence in my life. I developed my confidence in the very language that I thought was destroying it.
When I hear myself say psoriasis, it stills sounds like I have a mouthful of marbles, but I’m able to say it with the emotional weight removed -- and it’s a different word entirely.
To read more, visit my blog http://thehappyspot-blog.com/.
Published On: February 26, 2014