What It’s Like to Lose 100% of Your Skin Color
Standing in front of the mirror today, I hardly recognize the girl I was as a child. The long blonde hair and tan skin are gone, replaced by white strands of hair and ghostly white skin. At least, that’s what I really look like today. But the world only sees my dark brown hair dye and tanner – because that’s all I let them see.
Vitiligo has taken 100% of my skin color and now part of my hair. I don’t expect you to understand how that feels – because the chances of this happening are less than .01%. In other words, it’s unimaginable. And yet, it happened to me. And after twenty years, I’m still trying to mentally grasp that change.
Here’s what it’s like to lost 100% of your skin color – and then some.
You’re invisible again – and thankful for it
No stares. No comments. No questions. The first time I put on full tanner and walked down the street, I was shocked – and thrilled – to find that I was invisible. When you live with vitiligo, you are constantly stared at – sometimes with comments and pointing fingers to go with it. It’s exhausting and intimidating to live this way. Inside, you’re going through a mental tug of war, telling yourself you’re beautiful, while being constantly reminded that you look “weird” by every set of staring eyes. To be invisible is a welcomed relief that can’t even be put into words.
You still feel like you have spots – at first
After living with spots for twenty years, the feeling of having spots doesn’t go away – at least at first. No one else could see the spots, but I still felt like I had them. I still looked at my skin like they were there. I still panicked at the thought of wearing shorts. To me, I was one big canvas of spots all patched together. They had just been there – and I knew they could come back. It took another few years for this constant anxiety about someone seeing my skin to go away. Today, I still get anxious about it from time to time, but I know it’s only psychological and do my best to let it go.
You carry an invisible burden
For most people with vitiligo, your spots tell a story – they let people know that you’re dealing with a skin condition. Today I’m still struggling to accept this condition and wrap my head around the fact that my skin has completely changed colors. Yet coworkers and friends that I’ve met within the past few years are surprised to find this out. They wouldn’t know – and couldn’t know – unless I told them. On the one hand, having this level of privacy is a beautiful gift. On the other hand, it’s interesting to hear people make assumptions about my life that are laughable to me – because they can’t know the twenty-year history I carry under my tanner and hair dye.
You don’t recognize the girl in the mirror
The girl in the mirror isn’t me – it’s the result of what an incurable disease has done to me. And that’s hard to accept. I’m often asked why I wear tanner if my spots are gone – why don’t I just let myself be pale? First, I’m quick to explain that “being pale” and having no pigment can look quite different. Yet I see their point. To them, it probably seems like an easy decision. But it’s one thing to be born with pale skin, and just know that that’s who you are. It’s another to wake up every day for twenty years and watch a disease take over your skin color, one little patch at a time. I understand this is a new me – logically. And yet emotionally, some small part of me is holding on to the old me.
Do you have universal vitiligo? Tell us about your experience in the comments below.
I’m 95% non pigmented now. I used to find interesting shapes almost like abstract pigment tattoos but those are too gone. I’m walking around looking transparent to the world. I always tell people I could star in the “Twilight” movies and I wouldn’t need makeup. I can deal with it most of the time but I’m just living running for shade cover because the heat from the sun hurts. I miss my golden summer life being kissed by the sun.
Paula, I know how you feel!! When I take photos with friends – especially at night – I’m always reminded of how ghostly I am, even with tanner on sometimes. And yes, just being in the sun’s rays feels painful to me.
I know that feeling because it is what I am feeling now. I am too white for people who lives around me. They asked me what I did for my skin to get white like a clay doll. The kids stare at me all the time. I am too white for taking photo with my friends who have tan skin. And I avoid beach because sun’s rays will kill me.
You speak of skin tanner. I have used this several times in the past to fill in my white patches but could never find one that would actually stay on. What do you use and what works best for you? I tried SO many products …
Tracy, great question! After trying many products, I landed on St. Tropez, which is a foam self-tanner. I love how quickly it dries and how well it tans my skin. It does come off a bit in the water though. If you’re looking for something to fill in your spots that won’t come off, you might look into Zanderm!
What is Zanderm and how does it work?
Zanderm is a vitiligo camouflage that is applied like makeup but is long-lasting! You’ll find two articles we’ve written about Zanderm at http://livingdappled2.wpengine.com/?s=zanderm. Feel free to check them out!
I am 68 years old and developed vitiligo after a bout with chicken pox at age 5. It has gradually taken all of the pigment of my face and trunk, adding large patches of white, coarse hair. After living in California where everyone is tanned and beautiful, at ages 11-13, I moved to Rhode Island, where the sun shone only occasionally in the winters, and 50% of the time in the summer. So, I went from being the bullied California preteen to a paler, barely noticeable person with vitiligo on the east coast.
Now, living in the south I avoid the sun because of the additional humidity here, but, I get compliments about my skin frequently from strangers! It’s amazing, and is nice to hear after the bullying of Los Angeles in the 60s!
Having blond hair (thanks to the hairdresser) with pale skin rarely causes me to remember those days gone by, when I tried to tolerate psoralen and sun lamps in the winter as a 7 yr old. I fell asleep too often and ended up with sunburns.
None of it was working for me, so I just decided to love my decorations and appreciate myself as one of God’s favorites!
Love this story – thanks for sharing with us, Juanita!
I just got this about 3 years ago and it has taken over 50% of my body and 100% of my life. I cry a lot when I look in the mirror. I pray every night that no one else gets this horrible skin desease.
Cathy, you aren’t alone. It’s taken over 100% of my body and much of my life too. I remember many days crying in the mirror and wondering how my life would have been different without this disease. I hope this blog and community can bring you the support you need!
Thank you for sharing your story! I used to hate my vitiligo, but now I can’t imagine myself without it! The only things that bother me are picking out foundation colors for my face and the massive amount of sunscreen required!! Which kind of sunscreen do you use?
Foundation is tricky, right?! I use the Neutrogena Ultra Sheer – it’s so easy to spray on and doesn’t smell bad!
I see so much of my own story in yours! While sometimes I wish I didn’t have universal vitiligo it is comforting to know that others have gone through what I have. My skin went from a darker tan to ghostly white, but still with dark hair. People used to ask if I was Mexican, Mediterranean, Native American, etc and now they ask if I’m French lol. I’m actually Scandinavian and Celtic. Sometimes I look at old pics or in the mirror and I can’t quite see myself. Its so odd to have changed looks so drastically sometimes I still wonder where I fit in at. Living Dappled helps so much with sorting through my confusing thoughts. Love it!