Being Part of the 1%

As spring and summer approaches and everyone including myself cant wait to spend more time outdoors in the warm sunshine,  I'm reminded (as I see my hand while reaching for my toothbrush and I exhale all the oxygen in my lungs through my nostrils)...I am part of the 1% of the worlds population that has the disease called vitiligo.  It is an auto immune disease that causes ones immune system to attack the melanocytes cells (these are the cells that produce pigment in the skin) and destroy them.   So in short, my body attacks and destroys its self. Way to go body!!!! There is no cure and due to the fact there is no "significant" health risks there has not been much research done compared to other diseases. I have dealt with "my spots" since I was about 12, that was around the time a spot got large enough to notice and cause alarm. Now don't get me wrong I am very lucky that my skin tone is light, so in the winter months my exposed spots are not too noticeable.  Most of my condition can be covered with clothing. I have spots on my hands and feet but just this week I discovered there is a new spot that has appeared on my right knee, its still small but as I know it is just the beginning of a larger spot in the future.  I am lucky that on my face only around my eyes have depigmented so far, it is common for the depigmentation to occur around the nose, mouth and ears also. But unless you are one of the few to see me without any of my makeup on you would never know.  I have learned over the years ways to hold my hands so my spots are not noticed and it is also why I love shirts with pockets, hoodies are my friend!!!  I have been asked whats wrong with my hands, if I've been burnt, I've encountered a couple mean kids through the years and I've also been teased by loved ones.  This disease may not have any "significant" health risk or be physically pain causing but it has very SIGNIFICANT emotional and psychological effects on the person living with it.  As if growing up in a world consumed by body image isn't hard enough for every teenage girl add a disease you can do nothing about and affects your SKIN to the mix. As I said before I'm lucky the severity of my condition can be covered with clothes and now that I'm in my mid 30s that isn't a big deal at all, but as a teenage girl being invited to pool parties, the beach, and the lake, having vitiligo added another degree of hyperventilation. Along with the normal stress any girl goes through preparing to attend a function, a bathing suit for me was a nightmare! Like Freddy Kruger, Friday the 13th, Poltergeist kind of nightmare, it totally terrifies me!!  Not once in my life have I had a bathing suit I was comfortable in (heck I'm not even comfortable in my own skin), one that I actually liked, nor have I been able to get the one I really wanted because my spots may show! I don't like bathing suits, and as I have found out most women don't, but my concern wasn't ever how my body looked in a bathing suit so much as it was dealing with someone seeing my spots. But wait.....Hold on...wait right there for a moment..... there is more.....there is one more thing EVERY woman can not stand to see in the mirror... every girls horror...GRAY HAIR!!!!!!!! Oh yes, no pigmentation in the skin means......yep you guessed it....none in the hair that grows from said skin!!! As a result I have had gray patches around my ears since I was 20.  Lucky again my light hair color has concealed it but I know its there, just like I know the spots are. I remember being in a fast food restaurant when I was in my teens, a young lady with a darker skin tone then mine was working behind the counter she also had vitiligo, there was a group of people who said some really hurtful things about her condition and were poking a whole lot of fun. I knew these people but they did not know I shared her condition.  My skin tone was lighter so it wasn't as noticeable and unlike this young woman at this point in my life the spots on any of my exposed areas were minimal.  Because of this experience I have never shared this part of me out of fear of rejection. I have even said yes to the question "Have you been burned?" because at the time being burned carried less shame than having a disease no one understood. I know my embarrassment and constant attempts to conceal my condition have scarred not only me but one of my most intimate relationships.  As I've grown in my relationship with God I have learned that God created me this way for a reason. One of the diagnoses states that my body mistakenly attacks and destroys its own cells.  I know God makes no mistakes, He formed me on purpose, He made me unique (part of the 1%) on purpose, so why do I hide the one thing that sets me apart from so many. Because I've listened to the world that told me being different is ugly, its weird,  disgusting, unwanted, undesirable, that I should be ashamed and hide, that I'm unattractive because I have spots on my skin. You see though what the world and the flesh like and desire changes almost daily. Whats in today is out tomorrow, this worlds image of beauty fades with time, with age, it changes.  But what will never change is that I have vitiligo and most importantly my God never changes.  I have fell in love with my skin as I have fell deeper in love with God, and as I know with each passing year I will lose more and more color from my skin until its gone, I know I will never lose the color in my heart because it is Gods home and I am His!!!! My Body is not mistakenly attacking its self its doing what God created it to do, for a purpose only He knows! 

Psalm 139:13-16  

For you created my innermost being; you knit me together in my mothers womb. I praise you because I am fearfully and WONDERFULLY MADE; YOUR WORKS ARE WONDERFUL, I know that full well. MY frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.