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.
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 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.
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.
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.
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.
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.
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.
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.
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.
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!
Allie, I am truly amazed at how courageous and brave you always are here on your blog and now more than ever. Your husband is right and wholeheartedly agree with him that you are beautiful inside and out, too. Sending some major hugs your way and cannot thank you enough for sharing what you are experiencing now with vitiligo.
Janine – This was the very first comment I read this morning. After I saw your name come up, I exhaled. I was beyond nervous to hit “publish” but after I read your words, I knew everything was going to be ok. I can’t thank you enough for your true friendship since I came into this space. And today, when I really needed you, you appeared. xoxo
YOU ROCK FOR SHARING THIS.
A girl at my daughter’s school has it and right NOW the kids are really kind and gentle (it is far more noticeable as her skin is darker).
Im sending this to her mom.
Thank you so much Carla!!! I wanted exactly this when I posted it – to bring comfort and support to other people touched by vitiligo. Mission accomplished!!!
YOU are brave for writing and sharing this post. It’s truly incredible my friend. I saw the season of America’s Next Top model with her in it!
Thank you though for sharing some of the information because I honestly had no idea!
Thank you so much Hollie! So glad you already knew about vitiligo and glad you learned more 🙂
im sitting here all choked up because you are so brave and amazing for sharing this Allie. you need no reassurance from me but you are so beautiful. Your inside beauty will always outshine anything you have going on the outside. I know how tough this must have been to share but think of the people you will help by just hitting publish. Your boys will forever love you regardless of your appearance. I think you know that deep down. You are and will always be my personal inspiration and shero. Please forgive me in advance if I hug you too hard in a few weeks and get all sappy because that is the only thing I want to do this very minute. I love you so much Allie. Keep rocking on my friend. You are doing everything just right.
I’m now choked up from reading this! I feel the love and it feels amazing!! I can always, always count on you for support, encouragement and the TRUTH. This is by far the hardest thing I’ve ever had to publish but, I’m so very glad I did!
Bring on the hugs!!!!!
I love you so much too. Thank you. Thank you. Thank you.
Allie, God bless you for your bravery and for your ability to make the best of tough situations. I know that vitiligo will not beat you. You have such an amazing spirit and what ever the future holds for you and vitiligo your beauty will always shine through. Xoxo
Cassandre – This means a lot to me! Thank you so very much.
I echo everything that everyone has already said. You speaking out about this, although super hard and scary, will do so much. I’m sure it will help you connect with others who are going through the same thing. You will always be a beauty no matter what happens. Hugs to you!
Thank you Angela! That is my hope because this was super scary!!!
Allie I am crying. I know you’re still going through all the emotion of just being diagnosed, which makes it even braver that you’re sharing. You are beautiful, inside and out and I’m so happy you have the right man by your side who recognizes that. So much love coming your way, no one who knows you even a little would think of you as any less than beautiful.
Oh Carly, where do I begin? I was so, so scared to publish this one and, after everything you have done for me today, that seems silly now. I can’t thank you enough for your friendship and support. I wish you were here so I could hug you…and then hold Tanner 🙂 THANK YOU!
Allie, I’ve told you many times how much you amaze me due to your strength, depths of heart, your warmth and your accessibility but today the depths of respect and love for you has grown even more! What a brave thing to share! It isn’t the admitting that you have vitiligo, it’s the way in which you share not ou your transition to acceptance (?) but your pain, admiration for others in their acceptance and your concern for your children.
I am sorry this is happening to you. I wish I could give you a huge hug on those days when it’s hard to deal with the frustration and today when you publish something so raw and heartfelt.
I imagine that this was more than a hard post to write and share but I’m certain that this will be a post that will help more people than you realize for a very long time to come.
I wish I had more words of comfort but I hope you know how much admiration I have for you for sharing.
Melissa, I can honestly say that you are one of the reasons I had the courage to post this. I thought about you reading it and how supportive and understanding you would be and it helped me to hit that publish button. That kind of friendship, there are no words for. You have already comforted me more then you know so thank you 1,000 times over!! Muah back at ya.
I admire your courage. Living in a society that values appearance it has to be difficult. For me, what’s inside is what counts. You are a beautiful person inside and out. Never be afraid to be proud of who you are regardless what other might say or think.
It’s so hard Kris but I’m trying. This post has brought me a long way because of the support I get from friends like you. Thank you!
I knew you were one strong lady,and this only reinforces it–I think this is a brave thing to put out there in public and I totally applaud you for it. Not so much for saying you have vitiligo, but for sharing your vulnerability with us.
For the record–you are gorgeous and some lacking pigment isn’t going to change that. You rock, Allie!
Thank you so much Amanda! If I was going to write about this,I had to go all in. Thank you for recognizing that.
Bravo! Bravo! Bravo!!! What is the purpose of blogging if not to spread information and be truthful and inspire/empower other people to be honest as well…. I am very familiar with Vitiligo….and yes it sucks and it eventually gets hard to hide, but you are a strong beautiful woman and there is no reason to hide….. Yes, wear bi hats for sun protection, but not to hide…. In a way, maybe when it is more obvious, it will actually be easier? I’m not sure, but you talked about wondering if when people look at you they can tell or not or they think you have peeled, etc…..maybe when it is more widespread, people will just look at you and know, and maybe that will be easier…..I’m not sure….. but I know that you are a kick-ass strong 40 year old woman, and you will handle whatever comes your way!
YES! It’s hard sometimes to ride the line of what the purpose of my blog is – fitness, running, being a mom, etc. – but it’s also about being a human being and sharing what’s going on and connecting with other people. Thank you so much for realizing that and reinforcing it!
That’s interesting what you said about it progressing and then not having to wonder if people notice or not. That is a great perspective and I hadn’t thought about it that way.
And no, the hats will no longer be for hiding!!! Thank you so much for your support Paria.
Wow- I never knew you dealt with this, and I LOVE that you’re putting it out there. We all have something, and it takes courage to voice those thoughts and be real.
I did not know the name for vitiligo but now I’m curious to dig into some of my holistic reading/colleagues to learn more. But regardless, you are beautiful!
Thank you so much Laura! I would love to know what you uncover. Lee Thomas, the man in the video, takes a lot of natural supplements and meets with a naturopath regularly. I don’t think it’s really helping him but, you never know.
Allie, I had absolutely no idea! Thank you so much for sharing today. I have read through some of the comments above and I can only hope that the outpouring of support today affirms your decision to post this. We are 100% here for you and although we can’t know what you are going through, we will listen. I am sure that I’m not the only one that thinks you are super pretty regardless of pigmentation!
It absolutely does Brittany and I am overwhelmed! I didn’t even realize how much this would help and I’m so, so glad I decided to post this. Thank you!
I was really thinking about what your husband said and it made me think about my husband. If he had vitiligo, no, it wouldn’t change a single way I think about him. Concern, sure. But beauty is beauty!
My dad has a gigantic life-altering birthmark across his face (you may have seen it in photos). He has spent his life telling people that he hasn’t been in a fire. Everyone who knows him doesn’t even see it. I mean I actually have to remember when we’re in public that he has one, only if a stranger looks curious.
I’m very vain about my face so I think I would struggle a LOT, but remember just how beautiful we all see you as.
Tamara, thank you so much for sharing that and saying that. I honestly had not even thought about if Mike had it and, now that I do, it wouldn’t change a thing. He has been my rock and was even the one who really encouraged me to post this because I have been struggling so much with it. And yes, I have noticed the pictures of your dad and how awful for him to have to explain it his whole life. But, I LOVE that you don’t even see it and you only see him. LOVE IT!
This is a wonderful post, and I’m proud of you for sharing it! It is hard to come out and talk about our struggles at all, but I think it’s really hard when you know you might be perceived as “vain” or told that there are worse problems to have. Of course there are, but that doesn’t mean your problems aren’t difficult for you. Your concern for others, especially your boys is really touching. Your conversation with your husband made me smile, because mine said something to a similar effect last week. I mentioned how many women are afraid of never being able to lose pregnancy weight and their husbands not being attracted to them anymore, and he said “I see so much more when I look at you than what you look like. Those thoughts and feelings aren’t affected by how much you weigh or what you look like or what color your hair is.” I was blown away because we are always told that men are “visual creatures” but there are clearly great guys out there, like your husband and mine. You’re an inspiration and I’m proud of you!
Thank you so much Danielle and yes, you totally get some of my fears and how this would be perceived, but I really needed to share this. My husband has been beyond amazing. So glad you have a good one too!! And really, when you love someone as much as we love our husbands and they love us, all the “visuals” fall to the wayside…most of the time 🙂
Your BEST blogpost yet! Love your honesty! Love YOU! You are beautiful! Now go back to Vegas and get us matching umbrella hats!
That is the best idea yet! Thank you so much Melissa. Maybe you can come up with a stylish outfit to go with my patchwork face? Start shopping! Love you!!
Allie, you knew this already, but you are my hero! SO brave for sharing, and I bet you have brought comfort for so many women all over the world, not just those going through vitiligo, but anyone who feels like they look different, and feels like they have something they are not confident about (is there anyone who this does not apply to). Thank you for your honesty as always, and I hope you see how beautiful you are, as unique as you are. LOVE you!
Tina – That is my true HOPE! That is the reason I posted this and the outpouring of support and connection has exceeded what I thought one post could produce. Thank you so, so much!! Love you!!
Your honesty and vulnerability are so inspiring. I found myself getting weepy and thinking how blessed your boys and husband are to have you – and you them! You are beautiful and are touching many lives.
Thank you so much! It doesn’t seem like enough to just say those two words so please know this truly means a lot to me!
Girlfriend, I don’t know what makes me want to cry more – your ability to use your space here to be honest, raw, and at the same time amazingly encouraging, or all the comments and outpouring of genuine love, respect, and admiration for who you are – none of which has anything to do with the way you look.
I can’t pretend to know what you’re going through, but have had eczema since 7th grade which has been super fun. The flare ups, the scarring, the friends (as adults) who will point to my face and ask, what the heck is that, yeah, all kinds of awesome. Mine comes and goes, but on some (minuscule) level, I can relate to the madness and sadness that can come with it.
My aunt was recently diagnosed with vitiligo as well, and apparently high levels of stress exacerbate it and cause it to spread faster. All the more reason to relax and have another drink. 😉
I honestly don’t know which is making me cry more either! I can’t thank you enough for saying that, for appreciating this and for being able to empathize with what I’m going though. Eczema is no joke and I cannot even imagine having it since 7th grade. It’s hard enough just being a girl though those years, you don’t need an “easy target” for the mean people.
I didn’t know that about stress!!! *leaves to pour large glass of wine*
I too suffered from vitiligo about a decade ago. I normally do not wear make up. During those days, I’d powder my face and neck heavily to conceal the blotches. I was afraid people would discover my “problems”, I rarely went out, and was extremely depressed. Over time, my vitiligo went away though and it hasn’t come back since. If I knew what I know now, I’d probably handle the situation differently. Granted, I wasn’t a runner yet and haven’t discovered my strength.
Thank you for your courage in sharing. You are beautiful in and out! I hope your vitiligo would go away like mine some day.
I love this Lois! I fully agree that running brings strength and my athleticism and training have helped me handle this better. I truly hope the same thing happens to me and I’m certainly glad for you. Thank you.
You are so brave and strong for sharing this! Your honesty is always so inspiring and you handle obstacles like vitiligo with such grace. Honestly, I can only hope my skin looks as young and beautiful as yours when I’m even 30.
Laura, you are so sweet. Thank you so much!!
You are beautiful and brilliant! I have never heard of this but it is not something I would really notice on someone. I grew up with severe scoliosis like hump back style, then had spinal fusion. Looking very different physically is humbling and makes me feel all people are beautiful by their spirit and words. You look gorgeous and can kick ass on the course, hallelujah
Yes! It’s very humbling although it sounds like you had quite an ordeal with a spinal fusion.
Here’s to kicking so much more ass 🙂 Thank you!
I just echo everything everyone said, especially Melissa. Thank you for sharing this, particularly since it’s still raw and it’s not all “figured out”. That’s when I usually share things – when I have it neatly tied up with a bow. But writing this – naming and claiming it? Amazing and so brave. You are beautiful!
The problem is that I don’t think I can ever tie this one up. I would absolutely have preferred that! Thank you so much for saying what you did Christine. I feel like you’re a blog friend who really knows me, and I take what you say to heart. Thank you! xo
Major kudos to you for sharing your struggle with vitiligo. I never knew that that was what the condition is called. Your hubby seems so sweet! And I’m sure he means every single word.
I can somewhat relate to your frustration with having a condition that not too much is known about – I have psoriasis, and while they say it’s genetic as well, no one else in my family has it. It can be really frustrating because they’re these itchy, red patches of skin that pop up out of nowhere, but luckily mine is pretty mild (for now at least). I get it around my eyes sometimes, which upsets me because I feel like that’s the thing that people notice most about a face. It sucks!
All you can do is prevent/treat it as much as you can, keep a positive attitude, and remember that you’re beautiful regardless 🙂
Nicole – Yes, you can relate. I’m so sorry because obviously I know exactly how you feel, especially when there’s ‘something’ on your face. I will try as hard as you do to keep my positive attitude. Thank you for sharing this with me and for all your words. They mean a lot!
Saw it. Didn’t give a shit. Would have asked if I did. I’m pretty sure your friends, family and blog readers see waaay past it. How’s THAT for perspective?! If it’s hereditary, I’d suggest a naturopathic doctor to check you and your kids out. I know a great one ;).
I love that perspective and love you! And yes, I need the info for that naturopath!
Your badassery never ceases to amaze me. Sending you so much love. xx
Thanks so much Tara. This can only help move me forward…
Oh my gosh girl. I had no idea!!! I’ve never noticed it in pictures that you have posted. And even seeing it now in these pictures you are still just as bad ass as I thought you were yesterday, AND just as beautiful as I thought you were yesterday as well. People love you and are friends with you because of WHO you are and not what you look like. I can’t imagine how you are feeling though, I’m sorry that you are dealing with this. I can only imagine how hard this post was to write. You are an amazing lady and we need to chat to figure out how we can meet up. I’m heading your way in a week and a half! I need to see that beautiful face in person!!
AH – YES!!! Thank you love and we need to make plans! I don’t want to miss you…
Allie, I am so sorry for all the pain this is causing you. You are one of the most vibrant and self-assured people I know, and I hope that vitiligo won’t change that. You say you know it could be much worse, but you don’t have to compare yourself and this disease to what other people are going through; this is YOUR reality and you are allowed to think it sucks.
People may notice the light spots on your face, but as soon as you smile, that’s what takes center stage.
Dana – Thank you for giving me permission to be pissed. I feel like I need to be grateful but I’m also super angry.
I will make a conscious effort to smile more! xo
Your honesty in sharing this will help other people. I have a friend who is dealing with this and so I have seen the emotions she has gone through. Thank you for sharing your story.
My hope was to help so please pass this on to her so she knows she’s not alone. Until posting this, I didn’t know anyone else who had this and now? I’ve “met” so many others and it has helped tremendously.
Thank you Sandra!
Thank you so much for posting this. So many bloggers pride themselves on being “raw” and “brave,” but this post is the real deal. I’m sure it was terrifying to put this out there, but the more we share with each other about our battles, the more we can all learn to be empathetic and loving. And, for the record, I don’t think there’s a picture on this page where you don’t look gorgeous.
Katie, thank you so much for saying that. It was absolutely by far the hardest post to publish but I did it for all the reasons you mentioned. Clearly it was the right thing to do because I haven’t felt this good in a month. The outpouring of love and connection is overwhelming and it’s the reason I love blogging and this whole community so much. Thank you!
I knew I adored you before I even met you, but now I love you even more! I admire the level of courage it took to write this post Allie, most people would not have the confidence to come out with something so personal and difficult ( including myself!).I think you’d be surprised at how many people deal with certain physical ailments that can’t be corrected or come along simply with aging.
However, I must say that I have never noticed this before in person or in pictures! You are an absolutely beautiful woman no matter what. In additional to super hot beautiful, beautiful on the inside as well. Thanks so much for sharing and reminding us all to confront our insecurities head on 🙂 xoxo
You are one of the most courageous people I know and I’m sure you would have done the same thing I did – face this head on! Thank you so much for writing this Jess, I truly appreciate it.
I am SO sorry your are going through this.
You are beautiful and spots do not change that!!!!
I actually did not know what Michael Jackson had, but thank you for educated me on this really tough disease.
Thanks for putting it out there and being honest to yourself and how you are feeling right now. You are very brave and should be very proud!!!
Thank you so much Julie. It was definitely a hard one to post but I’m SO glad I did!
Allie, I am so sorry that I am just commenting on this super important post. I have been sick most of the week and very behind on blogs.
With that said, I have tears in my eyes after reading this!! You are so brave, strong and beautiful! It takes such strength to share this with us and I admire you greatly for sharing it.
You have such a loving and wonderful husband!! You are an amazing athlete doing it all with two sweet little boys. What a role model you are for all of us.
I would have never noticed from your pictures. Keep being the great person that you are!! I’m so glad I found your blog! xx
You are so sweet Natalie!! No need to apologize and I’m sorry you’re not feeling well. Thank you for your words and kindness – they mean SO much!!!
Allie, YOU are one of the most beautiful woman I know and to have the courage to write this post proves it even more. As I read your post, I wiped my tears and I couldn’t help but think what an incredible athlete you are and how you’ve inspired me vicariously through Chrissie. You’re amazing, strong, brave and truly a woman I admire. Thank YOU for being you and continuing to be an inspiration to myself and others! Screw the white patches, you have endurance, speed and athleticism like Superwoman!! You are loved by many! Stay strong!
Thank you so much Tiffany. You have always been such a huge supporter of what I write here and of who I am and it does not go unnoticed. I cannot thank you enough!!
Good for you for being “out there” as this is a very brave decision. While we have never met, you are one of the most badass women I know. I can imagine you would/will ever let something like this stand in your way of having everything you want in life. Keep your head up and your sunscreen on 🙂
P.S. I have spent the last few days in New Orleans for a conference and the running conditions have been the exact opposite of San Francisco, humidity anyone? But exploring the city on foot has still been the best!
Thank you so much and I will take that advice on both counts! 🙂
Good for you exploring on foot though the humidity in New Orleans – yikes! Hope you’re back home to cooler temps.
I have it too. 🙁 I am all white now except that the past few years I now have very dark spots on my arms and calves. It stinks, but for me, compared to my chronic migraines, it seems like a minor issue. I wear a lot of YMX sun shirts during the summer- sunscreen is a must and early morning runs to avoid direct sunlight. My daughter has a spot on her neck and inside I am heartbroken. It’s not the end of the world, but it sucks. Giving you a big hug and if anyone completely understands what you’re going through it’s me. xoxoxoxooxoxo
Oh no! I’m so sorry but glad that you can understand exactly. And yes, it’s not the end of the world but it can feel like it. At least you have already been though (are going though) it and can better help your daughter. I wish I had someone in my family I could turn to for support or answers. Big hugs to you too!!
You can turn to me. Email me anytime- email@example.com I am always here for you. xoxo
What a gift! Thank you Lisa and I absolutely will. Thank you.
If I saw you au natural, as a nurse I would think to myself ‘that’s vitiligo’ and move on:). As another 40 yo mother runner, what would stop me dead in my tracks is how in shape you are!
Thank you for saying that!! I really appreciate it 🙂