What Vitiligo Taught Me About Loving My Body

I have a non-contagious autoimmune disease called vitiligo which cause patches of my skin to depigment. You may be asking, “Hey isn’t that the disease Michael Jackson had?” Yes! Which also explains where I got these stellar dance moves!

Growing up, I had no idea what it was. I just knew that part of me was whiter and part of me was…Tanner.

I didn’t think much of it until I got to elementary school. I remember sitting cross-legged on the gym floor in some kind of assembly when the kids next to me noticed the discoloration on my knees and freaked out. They backed away and told me not to touch them because they didn’t want to catch it.

I didn’t know what to say because I had no idea what I had. I don’t remember my parents ever talking to me about it. I never went to a doctor for it. My best guess was that I had leprosy because I read in the Bible that leprosy makes skin turn white.

Rather than suffering the embarrassment of not knowing how to respond to people’s questions, I started making stuff up.

Kids would ask, “Why do your elbows looks so weird?”

And I’d say, “You know the things that cows have? I have that. That’s why they call me cowboy.”

Though I tried to be humorous about it, I was deeply insecure. Not only did I have funky skin, I was also very small, which made me an easy target for bullies. As a restult, I spent several years feeling very very lonely.

One day a woman stopped me in the public library and said, “I saw that you have vitiligo! I do too!  Do kids make fun of you for it?” I shrugged and said, “Sometimes.” Then she put her hand on my shoulder and said, “Don’t let them make fun of you! You are awesome the way you are!” And then she left.

By the time I got home, I couldn’t remember the word she said, so I dialed up the internet and typed in “white patches of skin.”

That’s when I finally learned the word: vitiligo. I also learned that there were lots of people just like me, which was a huge thing to discover.

One of the things I learned is that the depigmentation is triggered by psychological distress, which for a psychologically distressed kid, was—to say the least—psychologically distressing.

I was just getting to the age where I wanted very much for girls to be attracted to me. I already thought I was too small and too ugly for them. Now I had to worry that worrying about it would make me even more ugly.

To make matters worse, I could see white spots beginning to spread on my hands and on my face—forehead, lips and eyelids. I remember being on the beach with friends who thought I was asleep. The sun had burned the white spots on my eyelids making them turn bright pink. They said, “Ohh he looks like a panda!” Maybe an inverted panda?

I just lied there pretending to be asleep. When they finally left, I cried and cried and cried. And then I wallowed in self pity for the rest of the trip.

During the car ride back to Arizona, I decided I had had enough. I was not going to spend the rest of my life obsessing over my perceived lack of physical beauty; I was going to focus solely on cultivating inward beauty.

That was over 10 years ago and it’s something I’m still working on. It hasn’t always been easy. There have been times when I was afraid to go outside for fear the sun exposure would make my condition worse. When I became sexually active, I feared what partners would think of the large white spots covering my legs and genitals.

Ultimately I keep going back to the same resolution I made as a 16 year old: I won’t let my fears prevent me from living my life.

As I’ve stepped into the sun, literally and metaphorically, I’ve learned a few things:

1) I don’t have to worry about what others think because chances are, they aren’t thinking about me at all. Turns out, most people are too hung up on their own insecurities to worry about mine.

2) Everybody is insecure about something. Even some of the most attractive, fit, healthy people you meet often struggle with self worth. Everybody gets hung up on stuff. So there’s no need to think that everyone else has their shit together while I am the lonely sufferer.

3) True beauty is based in self-acceptance. Fear is paralyzing. Self-love is empowering. You can’t be your best self if you’re running away from your reality. Accept yourself, spots and all, and you’ll find yourself flourishing.

4) Self-acceptance is contagious. As the matron saint of my heart Brene Brown says, “When you get to a place where you understand that love and belonging, your worthiness, is a birthright and not something you have to earn, anything is possible.”

When you stand in the power of your individual worthiness, you give others permission to do the same. THAT is beautiful! A group of people who see their uniqueness as opportunities rather than limitations can change the world.

It’s been a long time coming, but I can now finally say that I don’t feel shame for my body. In fact, I feel proud of it. My skin makes me unique. I don’t feel like I have a disease. I consider myself a happy hippie with tie dye skin. I’m not afraid of being seen. I’m not afraid of being vulnerable. I’m not afraid of being me.

Your body is an incredible gift that is billions and billions of years in the works. Stars have burned, worlds have formed, untold organisms lived, struggled, reproduced and died to create the genetic code that has culminated in you, the vessel through which the universe gets to experience consciousness.

You are the gift the world has given itself. So live it with full acceptance and gratitude and the world will return the favor. Love yourself, spots and all, and watch the magic happen.

Peace and love!