I was in middle school here in Cedar Rapids -- the same school my daughter just finished with -- when I first started noticing that something was wrong. It started with scales on the back of my neck. I did sports through freshman year in high school, but I was always quiet and not very social. All of that got worse when the psoriasis started. Some kids started calling me Fish Scales. Not real nice, right? And as it started to spread, the nicknames got worse.
I was really lonely. I had a few good friends, but all anyone ever saw was the psoriasis. When it spread to my ears and arms, people didn't understand it and I didn't understand it, so that made it even harder for people to be my friend, because they didn't know what was going on. After freshman year, it started to get really bad and really painful, and as it got harder and harder to move, I just gave up all my activities and did my own thing. I was a bookworm and smart, so I didn't do a whole lot outside of going to class. I'd go home, and sometimes hang out with the few friends I had. It was not easy.
I still talk today with one of my best friends from back then. You know, you get older and you have kids, people's lives separate a little bit. But this one friend, every time we get together, it's like nothing ever changed. That means a lot to me.
Now that I'm older and I know more about myself, I realize that in one sense psoriasis really did help make me who I am. I'm not as outgoing as I used to be, and I definitely have my moments where I still struggle, but I wish I had known back then, when I was 12 or 13, that it's not the end of the world. I spent a lot of time during my teenage years feeling suicidal. I look back now and I'm like, "Why was I so angry?"
I can understand why it was so intense and so difficult, but if you give yourself time, you do eventually learn that it's not the end of the world. Of course, when you're a teenager, everything seems like the end of the world. I'm learning that -- or remembering it -- now that my own daughter is a teenager.
This might sound minor, but believe me, it's not. My biggest struggle right now is shaving my legs and not having huge scabs all over the place. Little things like getting ready for a date, shaving your legs so you can wear that cute dress, or wearing shorts in the summer because it's 102 degrees outside -- these are daily considerations. And if you do get past that obstacle and wear shorts in public, there are always people who stare and even make comments. One day when my daughter was maybe 7 years old, we were at a store when some guy, a total stranger, made snide comment about how I should cover my skin because it disgusted him. I looked at him and said, "Well, your face disgusts me. Maybe you should cover it up, too."
I wasn't real proud of that, but sometimes you can't sit back and take it, you know? I want to teach my daughter to respect other people, but at the same time to stick up for herself -- and for others. My psoriasis was really bad for the first seven or eight years of her life, and because she's grown up with mommy's psoriasis, she's learned to accept everybody, regardless of what's wrong with them or what they look like. As long as they're nice to her, she's nice to them.
My boyfriend built a house back in August, and he had me help decorate it, because we moved in with him. One of the things he told the salesman was to only show us floor samples of colors that would hide my flakes. He wanted to make sure that when things were bad -- like they were this past winter -- and I got undressed and shot flakes all over the place that I didn't have to see them. He knows it distresses me, and he doesn't want me to feel bad. Now, we have the most beautiful flooring you'll ever see. You can't tell that I've flaked on it at all. We have to clean it up, of course -- but it's not the first thing I see every day. Little things like that can make a huge difference. They really can.