Beautiful Morgan sent me an email out of the blue, with her submission for the Ichthyosis Awareness Month Blog Project. I’m so glad she did. I love her attitude – especially how she’s embraced it and has begun to educate people who aren’t aware of ichthyosis. She’s so wise – she’s only 17. I wish I was as headstrong as her at that age . Morgan has Ichthyosis Vulgaris.

Meet Morgan.

“My name is Morgan Riebe, and I’m from Seattle Washington. I’m 17 years old. I never really paid much attention to my skin or noticed that it was different until a couple years ago. I knew it was dry, but didn’t realize that the scales or the way it cracks open during the summer wasn’t something that everybody experienced. However once I realized, of course, I became self-conscious about it.

Luckily for me I lived in a place where it rains 3/4ths of the year. This meant I could keep everything covered up and nobody will notice, until Summer. Summer was always the hardest for me. I would get up a lot earlier whenever I needed to go anywhere because it took so long to put lotion on everything. Halfway through the day or after I went swimming I would have to stop and put lotion on again. And if I ever spent the night at somebody’s house, I would have to put it on again before bed. Home was the only place I felt safe without lotion on. Sometimes I would tell my friends it was sunscreen, or make up some study that lotion helps fight against (insert disease here.) In my 13 year old mind, if anybody knew that I was different they wouldn’t want to be friends with me. And if a boy found out, I was convinced nobody would ever want to be my boyfriend.

I continued doing that until sophomore year in high school, when I started telling people about my ichthyosis. I didn’t like, announce it to the school or wear shirts saying I have it. But I told my boyfriends and friends when they asked why I always carried around lotion or was always putting it on. I still didn’t feel comfortable without lotion anywhere besides home. Anytime I left the house I had put lotion on at least once. It didn’t matter where I was going, even if I was just taking the dog out for a walk. If I had exposed skin, it had lotion on it. If I was going to be somewhere for a couple hours, I made sure to bring lotion with me.

It wasn’t until this year that I decided to stop caring. I don’t put lotion on before school every day. I don’t worry that people won’t want to be my friend if they see my legs or arms. Sure, I still put lotion on after I shower and before bed. But I don’t let it control my life. Everything was going great, and I was happier. The only negative experience I’ve had was due to someone not knowing- “what’s wrong with your legs?” It stuck with me for awhile, it really did. After that I almost went back to putting lotion on all the time. But I decided to take it as a call to action. Instead of hiding my ichthyosis, I embraced it. I let other people know what it is. I spread awareness.

Just because you can’t change the world, doesn’t mean you can’t change your world. Many more people know about my condition and it helps a lot with my confidence!”

 

May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.