Tuesday, March 21, 2017


That is the word that encapsulates how having Ichthyosis made me feel for the longest time. One of my earliest memories that is forever imprinted in my mind is seeing two girls use their foil sandwich wrappers to cover their eyes because they thought my skin condition was disgusting. I remember wanting to disappear and feeling incredibly sad and hurt. It felt as though someone had taken a sharp-edged knife to my heart and carved horribly intricate patterns into it. Six year old me didn't understand why anyone would act in such a hurtful manner and in all honesty, twenty year old me is still a little fazed by stares, rude remarks, and thoughtless actions. Some of the hurtful comments have stuck with me and have prevented me from truly opening up to even the people I love most in this world.
I felt so much shame in looking different. I distinctly remember spending so many hours scrubbing at my skin and trying new creams and prescription medications in order to try to look "normal" for my senior prom. While the picture on the left is not from that night, I remember feeling insecure and looking down a lot that night. While it was I'm sure a very memorable night, all I clearly remember was wishing that my skin was normal and that I didn't stand out. As crazy as it sounds, I thought if I looked a certain way, I would somehow be more likable.I found and still find myself constantly apologizing to people for things that are out of my control. I felt so much shame and embarrassment in having dry hands despite constantly putting on lotion whenever someone reached out their hand to shake mine or hold it or give me a high five. I would profusely apologize and brush off anything I left a trail of skin on when my skin pealed and when my lotion smeared on people. I also constantly apologized for inconveniencing those around me when I started to get overheated because I am unable to sweat.
My mind often drifts back to that hurtful experience and other similar ones and I find myself making assumptions about how those around me perceive me. I find myself hyper aware during interactions with strangers. When someone stares for too long, I always assume they are going to make a rude remark or ask an invasive question that I really don't want to have to address. Somewhat recently I took a bus to a restaurant with my sweet roommates and a stranger kept looking over at me. I felt super uncomfortable and I hoped he wasn't going to ask me about my skin because I just wanted to enjoy my evening without any ignorant comments or assumptions. Due to numerous bad experiences, I was so sure he was going to ask me about my skin, but instead he complimented me on my eyes as he got off the bus. I was surprised that someone was just being a decent human being by not making an ignorant remark or pointing out the obvious and deep down I know that it shouldn't be this way. I also find myself wondering if people are ashamed to be seen with me.
Because those wounds haven't completely healed and I struggle with comparing myself to others, I think part of me will always wonder, what if? While it is just a mutation in one gene and it is mostly just dry skin, it marks me to the world as less. As incompetent. As someone worth pitying. Life with a visible condition can be so hard. No matter how much acceptance and love there is around you, you still wonder, what if? If I had normal skin would I be happier? Would my life be more full? More meaningful? Easier? Would the people in my life love me more?
But then I remember that it is because of a mutation in gene TGM1 that I know firsthand the importance of compassion, kindness, and fully accepting people and their differences. I know how important it is to listen to people's stories and struggles and I am always willing and eager to lend an ear or a shoulder to cry on when I see that someone around me is hurting. Because of this condition, I have met some of the most wonderful and thoughtful people that have taught me how beautiful and precious life is. I have learned that we should revel in every moment we have because we are not guaranteed another breath. I am slowly learning to not let past hurt paralyze me and keep me from opening my heart.
Anyone who knows me well knows that I never write with the intention of sharing my thoughts. I write to process what's on my mind and the things weighing on my heart.This is the only reason that my writing is at all raw and vulnerable. I, like most other people, hate feeling vulnerable and giving people my heart to do whatever they wish with. The only reason that I even considered sharing this at all was because of a quote by C.S. Lewis that for years has challenged me to not just constantly share surface level things with people.
"To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable."
I am baring my soul more than I feel comfortable because my wish is that anyone reading this will try to embrace their differences and to remember comparison is such a thief of joy. It has the potential to rob us and make us feel insecure in our relationships. Comparison has the potential to blind us from seeing beauty and wonder in the people and world around us because we become too focused on what we do not have. I do not have perfect skin and I have to remind myself that I am not the problem when a stranger gets up in a hurry to move away from me or when someone wipes their hand off on their pants after shaking mine, as if a genetic condition is something that can be caught.
I'll leave you with this thought:
One of the cruelest and most hurtful things you can do to someone is to negate their value before you even give them a chance to show their presence. Who are you not giving a chance? When we stop trying to look at ourselves for flaws and begin to believe that we are truly so beautifully, fearfully, and wonderfully made, we can begin to see beauty and wonder in every difference and learn to appreciate life more fully. While May 31st marked the official end of #ichthyosisawarenessmonth, my hope is that this will not be the last time that I will share about my experiences even though relaying such vulnerable sentiments truly terrifies me.

Beautiful friends, stop comparing yourselves to others because you are a masterpiece. You are a work of art that has so much to teach and offer the world and I hope you know and believe that. <3

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