My name is Janine, and I am 26 years old. I am thrilled finally to have this opportunity to share my personal battle with a condition that has always been part of my life. Please understand that I rarely address some of these issues because I don't want any sort of pity. I will try to be fair and explain all aspects of my story. Sometimes it may appear to be contradictory, but sometimes, contradictory emotions are exactly what I feel.
I'll start with the fact that I have had psoriasis my whole life. This is a strong statement because many times (usually on a first visit to a new doctor) people think I am exaggerating. Unfortunately, psoriasis is probably the only thing I don't exaggerate about. It's true--I've had it my whole life. I've been covered with it on 90% of my body and now I'm down to 70%.
As a child I must have had some sort of angel sitting above me, protecting me from all the childhood cruelty I could have encountered, being "blessed" as I am with this stubborn and visible skin condition. As all children do, I got my fair share of teasing and at times it bordered on cruel, but I can honestly say it was never for psoriasis (at least to my knowledge). For this reason, as a child I never really took much notice of it, except for the few times that the itchiness became so unbearable that I scratched until my skin broke open in irritation.Fast-forwarding to my teenage and early adult years, all the world's insensitivity started to rear its ugly head. I never grew out of my psoriasis, as most professionals predicted I would. Instead, the condition got worse and more temperamental. In addition to the still unbearable itchiness, I started to realize that my biggest problem was going to be with the outside world. I blame most people's behavior on ignorance and actually appreciate my condition at times for its ability to filter out the people in this world who are not worthy of my time. There was the lady at the counter of the coffee shop I've since boycotted, the woman at the boutique of my once favorite shop, and the endless stares at the beach that came from everyone from children to grown adults to seniors. The optimist in me thought maybe they, too, had someone close to them with the condition and that the stares were for sympathy. (Although this is something I would never wish for or welcome. In fact, I've only seen it cause awkwardness.) But as I grew older and unfortunately less innocent, the insensitive, inappropriate, smack-you-in-the-face comments and overheard conversations showed me otherwise.
Despite my usual "I don't care--I'll wear shorts when it's hot, and if you don't like it, don't look" cockiness, the remarks do hurt, especially when they come from people in my life who are close to me. Many times, people I have looked up to, respected, and trusted have destroyed that bond with a single ignorant statement. People who know me, I thought, would have more knowledge and sensitivity, but that has not always been the case.
Sure, I've cried when someone has ruined my good time with a look or a comment. I've also bitten back when an unwarranted comment has been flung in my direction. It's normal and it's human. I don't think people should be ashamed and feel inhibited because of others, particularly because of something like living with psoriasis, a choice that was never theirs to make.
However, the aspect that probably hurts most of all is when the truly good people in my life, those who have long forgotten that I even have this unsightly condition (I'm confident, but not blind), have to experience the cruelty that I mostly choose to ignore. The ones who were with me at that coffee shop. The friend who still feels bad knowing why I'll never go back into that boutique despite their great sales. And the people who've convinced me to go to the beach even when my skin was at its worst, because, they pointed out, it shouldn't matter, and seeing their faces when they realized sometimes it does matter because even they feel the sting of the stares.
The list goes on. There are those great friends who've defended me against insensitive comments when they think I am out of earshot. My beautiful boyfriend who not only looks past the condition, but embraces it when I forget how. My dedicated mother, who will never give up researching, joining forums and writing letters when she thinks I'm not paying attention. Their pain is the worst because I know they are hurt for my sake.
Despite all of the obstacles surrounding my disease, I am still a young and bold woman entering the prime of her adulthood, the moment in a woman's life where she realizes anything is possible and now is the time to take advantage of what life has to offer. I have a list a mile long of all the things I want to do as an adult and am finally realizing I am the only one able to make those things happen. I am realizing what really matters.
Educating the public about psoriasis and supporting psoriasis research is important to me because there are so many other people with the condition who have families and friends like mine. More than myself, I want to protect other people from facing the ignorance I've encountered. I want to educate and inspire people both with psoriasis and without it.
I am hopeful that there will one day be a cure. People with severe psoriasis should not have their lives shortened an average of four years by a condition that they've spent so much of their lives battling. But in the meantime, I refuse to hide who I truly am. I would like to see more people--beautiful, secure people--with psoriasis come forward and show that not all of us are hiding; that it's OK to wear short sleeves when it's hot, or even when it's not, just because it's sexy.
###
Write to Congress about psoriasis research. And check out our 2008 Psoriasis Cure Now Video Contest.
© Copyright 2007-09 Psoriasis Cure Now. All rights reserved. Home | About Us | Volunteer | Write to Congress | Psoriasis Walks | Privacy | Contact Us
