My diagnosis, my shame and my catapult into “me-hood”
When I was around four or five years old, my mom took me to Old Navy. I tried on a pair of shorts there and my mom asked if I liked them. My reply was something to the effect of, “I like them, but they show my legs.” If you would think after seventeen years I would be more calm talking about this, you’d think wrong. I still get hot ears when I confront it. When I was around that age, I was diagnosed with vitiligo. I don’t remember my diagnosis. In fact, I don’t remember a life without it. But my life with it is surely something I’ll always remember.
As a kid, I grew up in rainy Washington state, so wearing shorts, skirts, and dresses was not common. When it was, it was summertime, which means no school. Which to me meant the freedom to be me. I have vitiligo on my shins up to my knees, a spot of it on the back of my left knee, my eyelids, the corners of my mouth and occasionally on my hands. It was undoubtedly most noticeable on my legs, and it drove me crazy. For those that don’t know what vitiligo is, it’s an autoimmune disease that tricks your body into attacking its own melanin. Melanin is what gives skin and hair its color. Meaning that I had large white patches on my skin where my condition felt fit. Vitiligo is unpredictable and, for me, agitated by stress. Forget crying and moaning about having it, that will only increase the size of your spots, decreasing the size of your hope along with it.
At its worst, having vitiligo left me with low self-esteem, a fear of summer, guilt, and worst of all: a secret. Growing up with my most obvious spots covered, there wasn’t much vitiligo to see save for what was on my face. I soon found out that having vitiligo on my eyelids was actually desirable. I would often get positive questions or comments like, “are you wearing eyeshadow?” On the other hand, the vitiligo on the corners of my mouth caused more than one “you have something on your lip”, the ultimate humiliation back then. That’s when I learned to hide the “undesirable” parts of me.
It started out as a convenience for me. Being stared at or having people question your appearance is disheartening. Having people stare or question your appearance at age five? Well, you can imagine the toll that takes on a growing girl. Plus, the explanation of it gets tiring after so many times. I always wondered “why do I need to explain what I look like? It’s just me.” To my delight, I realized that living where I did and keeping my routine strictly “legs covered” activities only; I could pass myself off as typical to pretty much everyone. Once the pants were on and the vitiligo was covered, I only received compliments on my appearance, no one stared, and no one asked for an explanation about why I looked the way I looked. As a kid I strongly correlated my beauty to how well I hid my secret.
In middle school I had my routine down. I always covered my legs. Even while playing volleyball I’d pull my socks all the way up to my knee pads, even though it made my feet feel like they were in shoes one size too small; I looked like any other girl on the court. I skipped popular camps so I wouldn’t have to bare the shame of my differentness to my whole class swimming in the lake. I’d wear jeans everywhere, no matter the temperature. But I was missing out, and I knew it. I needed a way to get out and do what everyone else was doing, but still protect myself from being seen fully. That’s when I turned to professional makeup.
I loved having makeup on my legs. I could finally look how I felt, how I thought I was supposed to be: sans that mistake that God had made on me. Putting on my makeup took about twenty minutes to get it perfect. I had to layer, powder for security, layer again, powder again, until the makeup blended into my olive complexion perfectly. Finding the right color wasn’t easy either, it was a delicate balance of two colors that had to be mixed together. I also had to be careful not to rub or sit on my legs or bump them on anything if I wanted to keep the makeup in place. Once was armed with something that I felt evened the playing field between my peers and myself, I started to become a little more comfortable. I was talking to boys, going to the lake, enjoying being a kid. I was finally out of the spotlight of my own personal self-bullying, and I knew no one else would come for me either. I was well liked with a wonderful family and was not physically picked at for anything other than my vitiligo. Peace at last. Well, not exactly.
Once I was done focusing on myself and my flaws, I was able to open my thoughts to other things. One of those things quickly became the relentless bullying going on outside of me. Now that I was one of the “cool kids”, I was in a world where it was okay to beat other people down, but to the bullies, I was in the in crowd. Once in middle school one of my classmates was making fun of a girl eating lunch, so much so that it made her cry. It’s hard for me to write, and still makes me emotional to the point of tears. I stared at her red-hot face, holding her sandwich, at the mercy of the jackass who had the nerve to make her feel like she didn’t belong. I thought to myself “that could easily be me.” And something in me changed.
I started to notice that while I shrunk in the shadows, hiding what made me different and hanging with people who couldn’t understand pain that comes with being born different, or even just enjoying being different; I saw countless abuses to kids who didn’t have a pair of pants or makeup to cover their insecurities. I continued to bow away from the light of the truth, feeling immense guilt and shame for watching other people suffer. I gained a unique perspective as a beauty, hiding behind a beastly secret. I would become so emotionally destroyed watching other people suffer but continue my silence for fear of what would happen if people found out why I was defending the defenseless; because I am “one of them”. Because of this, I saw two sides to countless people.
There seems to be a media misconception that bullies are always mean. Trust me, it isn’t true. Bullies are nice to people they enjoy, even outgoing and friendly on the fly. Then when someone who dares to stand out comes along, it’s like they pull off a mask of lightheartedness to reveal a grotesque, unforgiving monster underneath. I would watch as boys chatted sweetly with me, then turned around to harass an innocent girl or boy for anything you could imagine (clothing, hobbies, family). I would receive offers to birthday parties where all anyone would talk about is other girls who weren’t invited, teasing them, picking them apart like chicken off the bone. I would have “friends” who were wonderful to me but spat in the direction of people who were genuinely nice because they didn’t look the part.
Even as I progressed into high school, my uncertainty about my own worth hadn’t faltered in the slightest. That is, until I was a junior in high school, when I was blessed with a teacher who would change me forever. I’ve always loved English. Junior year English was no different. In fact, it was one of the best classes I have ever taken, even after four years in college. My teachers name was Ms.Woldendorp. She was from South Africa, she had beautiful eyes, a warm smile, and a passion for her job. After a short time in her class, Woldy (as we all affectionately called her) singled me out one day and told me I was a good writer. I must have frozen in place. I never spoke about loving to write, it was my first affirmation that I had something special. Even if I’m not the best writer in the world, that meant something to me. Scratch that. It meant A LOT to me. From there I built a relationship with her based on mutual love for English, and for me, what became a fundamental joy for learning. I gained confidence in myself, because Woldy showed confidence in me.
During the latter part of my junior year, Woldy gave me two suggestions. The first, apply for journalism. The second, volunteer in the special education classroom. She was (and still is) my idol, so I did exactly what she said. I was accepted into journalism and started in the special education classroom my senior year. The first day I stepped foot into the LRC2 classroom, our self-contained special education student facilities, I was nervous. I wasn’t sure what the experience would hold for me, and I was praying I would do well. About one week in, one of the students said to me “I love you”. I did everything in my power to control my emotions and keep myself from tears, I loved her too. The connections I built with those kids shaped me and reshaped me into who I am. They made my day, without fail, every day. I felt strong, depended on. I felt the best I have ever felt.
During my time in the classroom, I remember feeling like I might strangle anyone who would even potentially cause harm to the students in the LRC2 classroom and vowing I would do anything to protect them and be their friend, a good friend. A friend who stood up for them and didn’t allow people to make them feel the way I know the girl at my middle school lunch had felt. Suddenly a realization washed over me. More like through me. I had grown to love these students and respect them with all my heart. Why would I not afford myself that same love? At such a young age I had already denied myself the right to care for myself beyond my appearance. These students wore their differences upfront for everyone to see. Shameless and beautiful. Yet there I was, hiding a part of me that I felt wasn’t good enough.
It was shortly thereafter that I wrote a piece for the school paper entitled “My Thirteen Year Secret”, outing myself to the entire high school. I was different, and if that made me similar in any way to the special education students, I was damn proud. That article placed me in an editorial position for the paper. It also made me throw my professional makeup straight into the trash, along with any other questions of my worthiness because of the way God made me. Then I took to Instagram in college to get myself even more comfortable with who I was. The first time I posted acknowledging my differences, my hands were shaking, and I felt like I might be sick. I don’t regret it for a second.
At best, my vitiligo has left me with a sense of understanding. Not everyone is the same, and we never should be; it’s cliché but true, differences make us beautiful. I gained a strong ability to cope with what I cannot control. Five years from now, I could be cured, or I could be covered from head to toe in vitiligo due to its unpredictability. I cannot control that, so I let those thoughts flow through me like a wave while I picture the faces of all the amazing people I have known. Some tattered with age, some with crooked smiles, some with surgical scars, all of them perfect. I have the ability to connect with those who think we have nothing in common, simply by pulling up a pant leg. I can instill confidence and self-worth in people that thought they may never have a chance to feel like they are here for a reason. At best, my vitiligo has been the single most important blessing God has bestowed unto me. I am strong enough to live through it, and smart enough to let it define me only in the best of ways; and use it to change the way people think, feel and live their lives. At best, my vitiligo is the best part of me.
P.S. For the women and girls reading this feeling like you’ll never be good enough, change takes time and mental beauty outlasts anything physical one thousand times over. I hear you, I see you, YOU are worthy! Stop looking for a sign, it’s right here. Be yourself, hot mamas!