Vitiligo Challenged Me to Rethink My Idea of Beauty

Irene Aninye shares her story

This article is part of Health Divide: Skin Conditions and Darker Skin, a destination in our Health Divide series.

Irene Aninye

Photo courtesy of Irene Aninye / Designed by Julie Bang / Verywell

Meet the Author

Irene Aninye, PhD, is an advocate and encourager for those with vitiligo. Through her blog, Skin Deeper, Dr. Aninye shares her colorful experiences living in this world with vitiligo to inspire others—whether they have vitiligo or not—to discover their uniqueness and begin to see beauty in the most unconventional places and circumstances.

I was 15 years old when I first noticed a small, round patch of skin that was randomly starting to get lighter. It was only about the size of a nickel, just below my navel. At first, I thought…maybe my belt buckle was too tight, and it was leaving some kind of mark. But then, another spot appeared, this time on my chest, and then a sliver at the corner of my eye. I had no idea what was happening, but it was a change that made me feel uncomfortable, especially as a teenager.

I had recently been diagnosed with Graves’ disease (an autoimmune thyroid disorder) and had bouts of eczema at the time. Because of my dark complexion and the fact that I was already a regular at the doctor’s office because of my Graves’, it didn’t take long to diagnose my condition.

It was vitiligo - an autoimmune disorder that attacks your pigment skin cells (melanocytes). When these cells are damaged, they result in patches of lighter skin or areas that have completely lost their pigmentation.

With vitiligo, if the melanocytes are only damaged but not completely destroyed, you can try to stimulate pigmentation or repair it with UV radiation therapy. I tried that when I was in high school, but it didn’t work for me. Not only did new spots continue to appear, I was having to leave school early two to three days a week for the treatments, so I eventually decided to stop the therapy. 

I used makeup to try to cover my lighter patches, but at the time, there weren’t any brands with shades dark enough to match my skin tone. Even with the expensive, high-end makeup that models use, I ended up with reddish, clay-like areas poorly blended against my milk chocolate complexion. Throughout my late teenage years, I relied on high-neck shirts and halter tops – anything to cover the spots on my chest. I also avoided sweating as much as possible, but most of my shirts were still left with permanent makeup stains on the inside. At the time, the only people that I think knew about my vitiligo were my immediate family. I never talked to my friends about it.

Irene Aninye

I couldn’t hide it anymore. I couldn’t put makeup on my hands or wear gloves everywhere. So I realized, I couldn’t continue to cover my vitiligo. 

— Irene Aninye

My attempts to hide my vitiligo were mildly successful for a few years until I started to lose pigmentation on my hands. There was no way I could consistently keep makeup on my hands or wear gloves all the time. That’s when I knew I couldn’t hide my vitiligo anymore. I made the decision to stop wearing makeup and start diversifying my closet.

Living With Vitiligo

At first, the people close to me were shocked and concerned. Most of them didn’t know that I had vitiligo and didn’t even know what vitiligo was. Now, all of the sudden, these areas of lighter skin seemed to appear almost overnight on my body. I found myself having to do a lot of explaining and educating, and feeling like I needed to assure people that this was only a color change and not a contagious or crippling disease. So many people have remarked with surprise that my skin felt soft and smooth. I suppose that because of the “spotty” appearance of my pigmentation, they must have assumed my skin was rough or textured.

Within the next few years, my vitiligo spread, especially across my upper body - my face, chest, arms, and hands. By the time I graduated college, probably 80% of my face had lost its pigmentation.

Black women are proud of their color, and with a darker complexion, my melanin was poppin’! Society was finally starting to embrace darker skin, but now I had to reconcile the loss of my melanin, my coveted chocolate brown skin.

Vitiligo didn’t just turn my skin white, it transformed it into a mosaic of all kinds of shades. There was no uniform color, shape, or area of distribution–and its unpredictability at times was frustrating.

I was thrust into dealing with my vitiligo publicly. So I did. But I also had to deal with it internally and learn to truly be okay with my vitiligo - what I looked like today and how it could possibly change again tomorrow. I think when I started to embrace all the changes my body was going through, it started to attract people who desired to talk to me and brought a new level of purpose and appreciation to my vitiligo journey.

Irene Aninye

Black women are proud of their color, and with a darker complexion, my melanin was poppin’!

— Irene Aninye

I’ve had people approach me on the subway platform to tell me that they’ve noticed me during my commute and that they also have vitiligo but cover it. They ask me how I do it; how am I so confident? I’ve found myself comforting some who have been moved to tears as they shared their fears and challenges with me.

Some people catch themselves staring, while others feel compelled to tell me how beautiful I am. And then there are those who have word vomit, and find themselves saying the most random things to a complete stranger, leaving us both feeling awkward and uncomfortable. A woman once stopped me on the freezing cold streets of a small midwestern town to ask why I had black stuff on my face. I was bundled up in a hat, scarf, and gloves - all you could see was my face - and I had lost so much pigmentation that apparently she thought I was a white person wearing black makeup. I couldn’t believe that she had asked me that question (or said anything at all), but I guess if you have no frame of reference, you might be so puzzled that you just have to ask. (Technically, I initially thought my belt buckle was irritating my pigmentation loss.)

I have stories for days - good, bad, and indifferent! However, my greatest pleasure comes from my encounters with parents of kids who have vitiligo. Sometimes they want me to give a pep-talk to their child, and other times, they look to me for validation that their child won’t be rejected by society. Does my vitiligo impact my career? Will the world only see their child’s skin and will they put them in a box because they look different? I get their concerns. I, too, have shared their concerns. And I offer support where I can.

I really don’t mind people looking. Staring is not always bad. People stare at supermodels. If anything, my concern is what happens when children stare and adults react. I overhear kids ask their parents what’s happening with my skin–an honest and fair question–and the adults often chastise or hush them in shock and embarrassment. This turns what could be a learning opportunity into something scary and potentially traumatic. It’s important to remember that as adults, we teach kids what to be scared of and what to embrace.

Irene Aninye

I really don’t mind people looking. People stare at supermodels. Staring is not always bad.

— Irene Aninye

Loving My Vitiligo

A valuable lesson that my vitiligo has taught me is that your body can change at any time - whether it’s weight, ableness, or pigmentation. Beauty really is deeper than the skin, and if something external changes, you have to be able to adapt. Most importantly, you need to give yourself the grace and the space to learn how to walk comfortably in whatever your new normal looks like.

I did a photo shoot a couple of years ago where an artist airbrushed my entire body to blend all of my vitiligo areas for a before-and-after concept. The photographer commented that I seemed shy and uncomfortable with the makeup cover. He was right. When I looked in the mirror, I didn’t recognize myself without my vitiligo. It just didn’t seem like me anymore. My vitiligo does not define me, but it definitely has colored my life beyond the literal sense of my skin.

I’ve learned to gracefully decline well-intentioned offers from friends and strangers to try the perfect makeup color for my tone or recommendations for a novel therapy they heard worked for someone else. My beauty is not a blemish, it’s just me. Sure, I may not always want to be a focal point of attention when I walk into a room or visit a small town, but as a Black, female scientist, I’m used to standing out, and now I embrace it.

By Irene Aninye, PhD
Irene Aninye, PhD, is the Chief Science Officer for a women's health nonprofit and skin health advocate.