I wish my ‘disease’ involved wearing one glove, tons of sequence and busting out some of the best dance moves and lyrics to ever hit the planet but, alas, what the late great Michael Jackson and I have in common is something truly awful.

MichaelJackson

It’s called vitiligo (pronounced vit-ih-LIE-go) and it’s an autoimmune disease that causes your pigment to attack itself for no apparent reason, leaving blotches of white skin in it’s wake. About one percent of the world’s population has vitiligo, which is roughly 50 million people, and 2-5 million in the U.S.

Michael was accused of trying to “become white” by bleaching his skin, which is insane because no one who has vitiligo wants it, but he is now strangely the most famous person to have had it.

Yes, technically I’m white and this disease is seen mostly in black people or people with very dark skin, but my white patches are still very obvious.

THE PAST

The first time I noticed it, was under my right arm. I had two tiny white dots and decided to get them checked by a dermatologist. I had never been to one before then and, when she looked at the little white dots with her infrared flashlight and said “that looks like vitiligo” I had no clue how my world would change.

That was three years ago and those little spots have turned into huge patches.

I have them on my back, underarms, legs, hands and face. When I get chaffed during training runs or races and the skin rubs away, the pigment never returns.

In the past year and a half, the patches on my face have gotten increasingly worse and much more noticeable.

This spot on my back was half the size last summer.

This spot on my back was half the size last summer.

THE PRESENT

There is no cure and doctors don’t even know why it happens. Since it’s not life threatening, there’s not a lot of funding for research and therefore, not much you can do to try and stop or reverse it. Basically my options are putting steroid cream on three times a day (on my face! near my eyes!) and possibly doing laser light therapy.

The summer is especially torturous. Being exposed to the sun doesn’t necessarily make the vitiligo worse but, it makes the rest of my skin darker and therefore, the white spots more obvious. Non-pigmented skin also burn very easily which makes even more of a contrast.

I never leave the house without doctor recommended sunscreen slathered on my face and neck and usually wear a hat. I always wear both when I go for a run plus sunglasses. I keep two tubes of sunscreen in my purse, one in my gym bag and one in my car. I keep hats everywhere.

It sucks.

I should have bought this one while I was in Vegas. #MyHatIsAnUmbrella

I should have bought this one while I was in Vegas. #MyHatIsAnUmbrella

Vitiligo may not be life threatening in the way cancer is, but I’m battling some pretty heavy feelings right now, each and every time I look in the mirror, or take a selfie.

I took this in a dressing room on my recent trip to San Francisco. Florescent lights suck and I still get startled to see this looking back at me.

I took this in a dressing room on my recent trip to San Francisco, specifically for this post, otherwise I would have never snapped it. Florescent light really brings it out and I still get startled to see this face looking back at me. #FakeSmile

Obviously, I’m vain. I have a blog in which I write about myself three times a week. I train for up to two hours a day  to shape and sculpt my body. My sport puts a huge emphasis on body image and I like being 40 and still being able to wear a bikini.

I was also blessed with great skin. No one in my huge Italian/Cuban family looks their age and I usually don’t wear any make-up. Not until recently of course.

In one of my many hats to keep the wonderful, warm yet damaging sun off of my face.

Where’s my face? That’s the point! In one of my many hats to keep the wonderful, warm yet damaging sun off of my face.

I’m now hyper aware of people looking at my “spots” when they’re having a conversation with me. A few ask if I have ‘sun damage’ but mostly people don’t say anything, which is the worst because it leaves me wondering if they notice it or not. I’ve found myself putting my hand up to cover my chin, the way people cover their mouth when they talk, if they have bad teeth.

It makes me want to cry, and I do. A lot.

Watching Lee Thomas, and the courage he has to continue doing his job, makes me feel better and that my vitiligo could be so much worse:

There’s also Chantelle Brown-Young who is a super model with vitiligo. Pure courage.

Supermodel_vitiligo

THE FUTURE

The one thing they do know about vitiligo? It’s hereditary. I’ve scoured my family tree and no one seems to have had it yet. Lucky me. But, I’m very scared that my kids could have it. I’m also scared of looking like a complete monster and having other kids make fun of mine because of the way I look. One of the most heartbreaking things people with vitiligo deal with is scaring little kids because of the way we look. It’s truly awful.

My husband has been amazingly supportive. He tells me how beautiful I am at least three times a day. He did this before the vitiligo was so obvious but, the fact that he continues to do it, reassures me I’m married to the right man.

I’m still making him sign an agreement that he can’t leave me when my face is unrecognizable to him. He says that’s not how he recognizes me. Gotta love that.

At a recent dinner where, if you look closely, you can see the patches on my face.

At a recent dinner with my husband where, if you look closely, you can see the patches on my face.

My ‘spots’ are going to continue to spread. I have a lot of little spots now, but I know exactly what they turn into and I will spare you the pictures of my underarms, since I’m reaching my over-share limit already. I mostly fear the future and ask myself questions like:

Will I stop wearing shorts at some point because I’ll be embarrassed of my legs?

How much make-up will it take to cover my face next summer?

Will there come a time when the boys will be embarrassed of me and not want me to be in public with them?

*For purposes of full disclosure, and so you know just how far my paranoia goes, the boys have yet to say one single word to me about the spots on my face or anywhere else on my body.

THE POINT

It took me a very long time to publish this post. I’m still unsure about it. My feelings with this are so raw and I’m working though them on a daily basis, and this is part of it. Having vitiligo has made me examine who I am. I literally look in the mirror and see a different person.

It’s given me a new found respect for people who are stared at every single time they leave their house for one reason or another.

Most importantly, it’s teaching me about control and basically not having any. There’s no workout I can do or diet I can follow that will stop the effects of vitiligo. I can’t hide from it and I can’t stop other people from noticing it, I just have to deal with it.

A hat is always part of my racing outfit.

A hat is always part of my racing outfit.

I absolutely 100% know that it could be a lot worse but these are my demons and I’m exercising them here in hopes that it helps.

Since it’s so noticeable on my face at this point, and most people are too polite to ask, I wanted to let everyone know that I’m not peeling from a sunburn nor do I have any other sun damage. I don’t have a fatal disease and I’m not trying some new training method that involves skin peels.

I have vitiligo and this is what my face looks like. Maybe I should call Caitlyn Jenner to discuss drastic transformations. #GirlsNight

 

Have you ever heard of vitiligo? I would love any tips, ideas, knowledge you may posses about this new world for me!

 

%d bloggers like this: