Thriving with Vitiligo

I remember this so vividly…I was in college, laying out on the grass in front of my dorm soaking up the last few rays of summer and I noticed it. Inside my index finger was a half moon-shaped white spot that the sun didn’t tan. I thought it odd that I would hold my finger that way, but shrugged it off as pre-adults do. Up until that point, I lived a life of sun worship; my Italian skin turning a beautiful coppery brown each summer that I cherished! At that age, tanning was everything! My fairer skinned friends would slather their bodies in Crisco and other oily substances trying to attain the glow that came easily to me. This spot was just a blip on my otherwise golden skin. Until it wasn’t.

As the summer faded and the leaves began to change, my tan began to fade but that spot never quite disappeared; it was always paler than the rest of my fingers. One morning, more white spots appeared. Just my hands. I happened to be home for a break and was at a friends home, his mom was a nurse so I asked her to look at my hands. She was puzzled. It felt like skin. It didn’t itch. She told me it was probably hormones and that I would “grow out of it.” I did not.

Over the next year or so, more patches, more places. Then it hit my face. I was overweight all of my life, but the one thing people always said is, “She has such a pretty face, if only she would lose some weight.” And while that was such a shitty thing to say, in some twisted way, I still had that pretty face, until now. These white spots had invaded the last part of my being that would still be considered ‘pretty’ — now what? That hurt. Long story short, that prompted me to go to the doctor, I was diagnosed with Vitiligo. No known cause. Chemical imbalance. Unproven treatments, spotty success. At 19, the world as I knew it, changed.

I began feeling uncomfortable in public. I wore long sleeves, even in the summer. I wore my hair around my face more. I shrank away inside my mind and avoided a lot of situations where I would come in contact with new people. I felt ashamed of the way I looked; and I ate a lot growing fatter by the day. When I knew I had to go into a new situation, I would get that feeling you get in the pit of your stomach when you did something wrong…you know that feeling I am talking about? It was awful, but I had to suck it up and go forward. I wasn’t (still not!) independently wealthy and this was way before you could make a living from home so I would have to leave the safety of my home and people who loved me and venture out into the cruel world. And it was cruel.

At my first real job, we had these smoky window dividers in an open floor call center. I remember being behind one of the glass dividers and seeing one of my ‘friends’ looking at me with a little grin. When I asked her what was up, she said, “You know, behind that glass, you almost look normal.” Normal. Fuck, I didn’t realize I was abnormal.

Second instance at this same company, we were having a potluck. I brought in a casserole; no one would eat it. I found out that one person told everyone else that my skin was contagious so everyone was afraid to ‘catch what I have’. Wow.

The third instance came when I finally worked for a company that I thought was different. It was (and still is) an amazing organization training other leaders to succeed. I felt like people saw ME and not my skin. I started in a part-time admin role and continued to move into more in-depth roles; it was the start of a career. At one of my performance reviews with a boss that I love (to this day), we were talking about my future goals at the company. I had mentioned that I wanted to train…that’s when she told me, as kindly as she knew how, that one of the other trainers didn’t think I would do well in the classroom in front of students. I think the direct quote was, “They would be staring at you the whole time and not picking up the content we are trying to teach.” I.was.devastated. I cried buckets of tears for days. This place (and people) that I had put on a pedestal, was no better than anywhere else and I was still a spotted freak.

I could tell more stories, but they are all the same. Strangers staring. Me feeling ashamed. People making mean comments. Me eating more. New situations. Me becoming more of a recluse.

I’ve lived with Vitiligo for over 20 years now and in the past five years, something has shifted, finally. I am beginning to love myself again. Love my skin again. I am learning to embrace myself for exactly who I am and what I look like in this moment. I am not hiding my spots by wearing long sleeves on the hottest days or keeping my hair down when I really would prefer to wear it up. Over the years I have been a staunch advocate of people’s rights and anti-discrimination but never applied that thinking to myself, until recently. I spent the last 20+ years being ashamed of my skin and ultimately me because of the way OTHERS saw me. I started to see myself as others saw me and lost my confidence along the way. That stopped. I now see myself with my own eyes and what I see is remarkable.

I am special. I am beautiful. I am funny. I am smart. I am strong. I am sarcastic. I have flaws; but they have nothing to do with my outer appearance. I now see myself as a woman who is insanely creative, overwhelmingly positive and startlingly beautiful. I am different.

I have created a world for myself where people enjoy being in my orbit and I am comfortable being myself. I have facilitated large training sessions in front of a variety of audiences and never once has my skin been the focus. I have prepared and shared food with so many friends and family and not one of them have caught anything from me (except maybe a love of cheese!) and I have taken beautiful head shots, without filters or smoked glass, and felt perfectly normal. Memories of all of the hurtful words and stares are still with me, but they don’t make me feel ashamed any more. They fuel me. I don’t see myself with your eyes, only with mine, and I am beautiful.

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