16 May 2014

Ichthyosis Awareness Month: Morgan's story. "Just because you can’t change the world, doesn’t mean you can’t change your world."

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.


1 comment:

  1. Dear Carly, you are fantastic. Have loved reading your blog and everyone's stories. You were fantastic to me when I emailed you last year to say thank you about writing about platitudes and how much I hated them. You gave me courage to tell people that I wasn't interested in platitudes. You also referred to some fabulous other blogs. Thank you again Den xxx


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