Just Me…”Beautifully Unique”

By: Bailey

Just Me…”Beautifully Unique”

I thought I’d share a bit about my story.  I was born on June 15, 1986 with a rare skin disorder called Lamellar Ichthyosis.  There are over 27 different types of ichthyosis and mine is one of the more common ones that affect 1 in every 300,000 people.  Basically, what happens is my body sheds old skin cells off too slow and causes the skin to build up in dry, flaky scales.  My skin is always dry so I must shower and put lotion on every day.  Sometimes, that doesn’t even help and I will get cracks up to ¼ inch deep!  My eyelids are turned partially inside out because of the tightness of the skin around my eyes.  I also cannot sweat which makes something as common as a fever life-threatening!  As you can imagine, summer is my least favorite month.  I have to be very careful when I’m outside in the sun for too long or under stage lights (one of my favorite places to be) because I can overheat easily and go into heatstroke.  I often carry around a spray bottle filled with water that I call my “fake sweat”.  When I start to get too warm I will spray that on me to help cool my temperature down.  There are some perks though to having ichthyosis.  I don’t have to worry about deodorant since I don’t sweat.  I don’t have to shave that often since the scales block the hair from growing rapidly.  And I have never been bit by a mosquito!  They can’t get through my skin!

Other types of ichthyosis vary in severity.  In some cases, you might not even notice a person had it because it only affects the skin on their joints or stomach.  Others skin are so fragile that it often blisters and gets infected.  The most severe conditions affect their digestive system, learning, and even their lifespan (though medical research is proving to help further the longevity of these types).  But above all the physical problems and pains, the most challenging is the emotional trauma of growing up “different”.

When I started school parents called the principal requesting that he take their children out of my classes.  Kids wouldn’t touch things I touched.  I was stared at everywhere I went.  As I grew older, people called me Scaly Bailey behind my back.  It was tough making friends.  I never had boys having a crush on me.  I hated being different.  I hated being stared at.  I hated being left out of things because of my looks.  I often asked God to heal me and would be frustrated when I looked in the mirror each day to see my skin that I grew to loathe was still there.  I became withdrawn and very insecure.  I was so shy that I would hide behind my mom whenever someone tried to talk to me.  I thought I was ugly and worthless.  Who would ever be able to love me?

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I can proudly say that my life has changed.  Now, I can look at my skin with pride.   Someone once said it is like an abstract work of art!  I see it as one of the biggest blessings in my life.  I have learned so much from living with it.  I know that I am beautiful.  I may not be beautiful by the world’s standards but I am beautifully unique.  What brought about this change?  One day I realized that God created me in His image.  That transformed my life.  I began to eagerly soak up the scriptures that say that I am His masterpiece, that man looks at the outward appearance but He looks at the heart, and that He finds me captivating.  My life verse is “I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well” (Psalm 139:14).  God answered that prayer for healing, but it wasn’t a physical one.  He healed me emotionally to the point where I can love my skin.  Maybe you don’t believe in God.  Hopefully, my story will make you rethink that.  But if you don’t, then know that every day when we look in the mirror we have a choice.  We can either see and believe what the world says is beautiful or we can look at the face looking back at us and see the beauty in it.  We are all unique.  We each have different talents, hobbies, personalities, and quirks.  We all have different flaws.  How boring this world would be if we were all alike!  I’ll be honest.  I still have days where I look in the mirror and hate my skin, but I stop myself right there and remind myself of who I am.  I have come a long way.  I used to hate being me, but now if a cure was ever found for ichthyosis I’m not sure I would want it.  This is all I’ve ever known and I love my life.  I am just me…beautifully unique.

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Photos are by Joelle Watt Photography

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