Rainbows

It is the last day of Ichthyosis Awareness Month and I would like to share my experience. Some of you know about it, some of you don’t but this is a very brutally-honest reflection of my experience as someone with a visible genetic disorder. Just to warn you, I swear a little bit in this writing but it isn’t done to be profane, it is for emphasis. As I am writing this I am baring my soul to you and being very vulnerable because it is healing and definitely spreads awareness of my individual experience with having Ichthyosis.This is one of my more intense, raw writings, but I hope if you choose to read it that you enjoy it and learn something from it. It is kinda long and like I said, intense, but I promise, I wrap up with some very positive comments. Also, I would like to add that the negativity I talk about in this writing is not a reflection of what I think about myself, but it’s a reflection of some of what I have been through that has helped shape me into the confident, bubbly person I am today.

So this month I am normally very active in my advocacy for Ichthyosis Awareness, but it has been a crazy time what with my first year of graduate school coming to a close and my beginning of a new job that involves a lot of training. Before the month ends though, I would really like to write a little bit about my experience to bring awareness to those who may not be aware of my skin condition as well as to just take a moment to let myself be candid and vulnerable about this part of my life. First off, I would like to share briefly what Ichthyosis is. There are many types of Ichthyosis- I have Lamellar or ARCI type. It is a genetic disorder that I was born with because both of my biological parents carried the recessive gene to make the mutation I inherited possible. Basically, I am missing the gene that regulates my skin’s ability to hold in moisture as well as regulate skin cell growth and shedding. So basically, I am regenerating extra skin cells and they shed slower and in larger pieces, hence the visibility.

My symptoms are that my skin is very dry, which means it peels, flakes, itches, needs to exfoliate, can be very uncomfortable (especially in the heat), and makes it difficult for me to sweat. To take care of it I take at least one shower a day in which I scrub and then I get out and dry off and put on 3 different types of lotions- creamy Vaseline, St Ives 24 hour moisture, and Neostrata Problem Dry skin. Sometimes my skin hurts or looks so bad that I don’t want to leave my house, but most times I am perfectly ok with it and sometimes even neglect to notice I even have dry skin. The perks to my skin is that I heal fast, I don’t smell bad (because I don’t sweat enough to create B.O.) and scars don’t stay very visible on my skin. So basically, I’m an X-Men character (LOL).

I like to joke about my skin condition and look at the bright side of things- I am a Realist, but I am also a glass half-full kind of person; however, I am triggered by the inconsiderate comments people make, even if they are just trying to make sense of what they see. For example, I’ve had many people ask me if I was in a fire or if I was sunburned really badly then proceed to tell me how they just didn’t understand why I look the way I do or disapprovingly tell me that I should use more sunscreen. I know people become nervous when they see a visible difference they don’t understand and as you are reading this, you may recall a time where you looked at someone with a visible difference and automatically made an assumption about them. I am not by any means condemning you, hell, I have a visible difference that has earned me some, for lack of the better word, fucked-up comments. I would like to ask you this though or challenge you for a moment to remember that when you encounter such a person that you be mindful about their experience. I am asking you to please be empathic to them. Think about what you are going to say to them or how you want to inquire about their condition- If you were in their shoes, ask yourself, would you take kindly to what this person is saying? Ask yourself, is this going to ruin their day? Why am I asking? Should I be asking? How could I ask?

I can’t even tell you how many times it has ruined my morning, afternoon, night and sometimes even my day when someone has made a tactless comment to me about my skin I can’t even adequately put into words how many days of my childhood were tainted by the times some of the kids at school were assholes to me because of my skin condition. When I was 12, I was at my very first dance, the 6th grade invitational and the boy I had a crush on refused to dance with me and left me standing awkwardly on the floor. I can’t sufficiently put into words how distraught and ashamed I was when the two boys assigned to walk me to the stage at 8th grade graduation refused to escort me because of how ugly I was. I wanted to go home and scrub my skin off even if it meant that I was going to be scraped up, at least I wouldn’t have scales. Words can hardly express the heartbreak I felt the summer before 9th grade when three guys who I thought were my friends told me I should do the world a favor and kill myself because of how disgusting they thought I was. Honestly if I were suicidal, that would have been absolutely terrible because NO ONE should ever have the things they said to me said to them. NO ONE deserves that. I can’t sufficiently express to you how frustrating it has been for people to mistaken my skin for a burn or when they tell me I am faking being overheated. It also makes me sad every time someone looks at me too long or asks me if I was in a fire or even seems like they think less of me because of how hideous people think I am. Some days I just want to get out of bed and not have to shower or put lotion on without severe discomfort being my punishment. Some days I wish I could wear short sleeves without getting fucked-up stares from adults and children alike. I wish I could erase the strange facial expressions I receive because of something I can’t help. I wish I could just not remember some of the things people have said to me and I wish I could completely shake off the desire to have normal skin, as if somehow my dry skin has made me less of a person, less beautiful than other people.

I go into great detail about my inner experience because having a visible difference is no joke. But you know what? There is a silver lining, no… There is a RAINBOW to this storm that has been my experience and you know why? Today at 23 years old, even though at times the way people react to me is beyond rude and is insensitive and it baffles me, I know that I am stronger because of my experiences. I know that because of this annoying-ass mutation, that I am who I am and I would not trade that for the world. For every asshole, there has been 5 amazing experiences or an allies. For every asinine comment, there has been 10 compliments. For every time I have felt sad and defeated, there have been many times where I have felt happy. For each time I have felt undesired and rejected by this appearance-focused world, I have felt embraced by my loved ones and sometimes even strangers. For every time I have felt like I hated people, I have felt so much empathy for other people’s experiences that sometimes I have to turn it off. I am an outgoing, confident, fun-loving, friendly, eclectic, goofy person who has a great love and understanding of diversity. I was adopted by parents who love me, I grew up with 2 brothers and an older sister, I have biological family members who I connected with in my adult life who embrace me, I have a WONDERFUL Fiance named Wes who loves me no matter what and his family, I have an AMAZING best friend Stephanie who has been with me through everything and loves me for who I am, I have friends who support me and don’t judge me, and I have had thousands of fantastic encounters with strangers that left me speechless and reminded me how beautiful this world really is. I am also about to become a therapist and I am so happy about this because I have LOVED this career so far.

It is with confidence that I can say I love my life and that even though it has been very challenging and painful at times, I am grateful for it beyond comprehension. Thank you for listening

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