8 Women Share What It’s Like to Live with Universal Vitiligo

Only one percent of the world’s population gets vitiligo – and an even smaller percent of the population gets universal vitiligo, characterized by an 80 percent loss of pigment or more. Here, eight women share what it’s like to lose almost all of their skin’s pigment to vitiligo.

“I don’t feel accepted by black people on a whole or white people on a whole.”

Name: Darcel de Vlugt, Bridal Designer and Freelance Writer
Age: 33
Location: Trinidad and Tobago
Years with Vitiligo: 28
Instagram: @ddv_vdv

I first got vitiligo at the age of five, starting on my limbs and then moving onto my torso. I was fully depigmented at the age of 17 and started noticing repigmentation after the birth of my daughter when I was around 25 years old. I was a very confident and talkative little girl thanks to the support of the community and my parents always encouraging me to take part in as many things as possible. When I went to university I began having an identity crisis about who I was because I didn’t ” belong”  at any table – I was Caribbean but raised abroad, I was mixed/black but didn’t look it, and I wasn’t considered Greek even though it’s as native a language to me. I was basically ostracized from many social groups – not outright but implied – and only really made friends with people who were third culture generation like myself.

Each phase of vitiligo has its difficulties. Having patches meant people would stare and wonder what was wrong with me. Being one color is difficult because this isn’t my natural color, so there’s the aspect of feeling the need to ” explain myself” to new people I meet so they don’t take my skin at face value, because I’m not white. I also look almost albino. I have no melanin in my skin and my skin is nearly translucent – you can see all my veins. It looks strange in itself. I am also a person of color who hasn’t really had a lot of experience in simply being a person of color because my vitiligo journey started at such a young age.

“I often find myself trying to prove how Indian I am.”

Name: Komal Patel, Business Analyst & Blogger
Age: 31
Location: Somerville, Massachusetts
Years with Vitiligo: 25
Instagram: @sweetandmasala

I first started getting spots on my right leg when I was six years old. The vitiligo spread to my face rapidly between the ages of six and ten. Today I have no pigment left as I was fully depigmented by the age of 23. It was scary for sure. I thought I looked weird and had identity issues as I did not look Indian anymore.

I feel the same today. Sometimes it is so tough being around other Indian people. Even though I am 100% Indian I often find myself trying to prove how Indian I am because my physical appearance does not show it. It is easier to accept now that I am all “white.” I don’t think I will ever want to be brown again – that would be a true identity crisis since I have known myself more as “white” than any other color.

“Boys wanted to know if I’d glow in the dark because my skin was so white.”

Name: Micale Conway, Full-Time Mom
Age: 33
Location: Iowa
Years with Vitiligo: 31
Instagram: @cale.con

My vitiligo started on my fingers when I was about two years old. It spread very quickly, and by the time I was fifteen, I was completely depigmented. Growing up,  kids were afraid to touch me, thinking they might catch whatever I had. They wanted to know why my skin was so dirty or why I looked spotted like a cow or a dog. Once I lost all of my skin color, I got comments about being a “ghost” and “glow in the dark.” Today, at age 33, after thirty-one years with this condition, my skin is still completely without pigment. My vitiligo continues to spread through my hair, eyelashes, and eyebrows. I have never had any treatments, and I have never experienced repigmentation.

I think universal vitiligo can feel even more isolating than vitiligo. When I approach others with vitiligo and tell them I have it too, they are often in complete disbelief. I’m part of the vitiligo community, but I’m still different. Universal vitiligo is a stage that takes decades to get to, and it’s an uphill battle every step of the way. I may have gotten to the top of my vitiligo mountain, but I still have battle scars from the climb – they’re just internal. I’ve chosen to use those scars to strengthen my faith and build my character. After living with this condition for thirty-one years, I can look back and appreciate how this condition, and the tough lessons that come with it, have shaped me into the person that I am so proud to be today.

“Growing up with vitiligo made me see people’s true colors.”

Name: Katie Lee, Kindergarten Aide
Age: 38
Location: Las Vegas, Nevada
Years with Vitiligo: 31
Instagram: @ktlb2lv

I first got vitiligo when I was six or seven. It started as a spot on my back around a mole and progressed from there. It was not until I was in my twenties that it started to take all of my pigment away. Three years ago, I noticed some repigmentation on my legs, but those have now gone back to no pigment. Growing up, I remember feeling so alone and different. I didn’t know another person with vitiligo. Through middle school, I wore thick nylons under my shorts and dresses so kids would not see my legs, and I often wore long sleeves. In high school I was able to wear pants and a school sweatshirt to hide my skin. Thankfully makeup was allowed, so I was able to make my face look evenly pigmented. In my twenties, I slowly built up the confidence to wear short sleeves. Now in my 30’s I wear shorts.

Having universal vitiligo has been a game changer for me. The comments went from “What is wrong with your skin?” to “Wow, you need to get out in the sun and get a tan.” Now that I am one color again I am finally at the age where it does not matter if they like me or not. At least I know if they don’t like me it is not because of my skin. Growing up with vitiligo made me see people’s true colors. Today I am extremely sensitive to people’s feelings. Having my feelings hurt by kids growing up I would never want to be the person to hurt someone else.

“I’m still mentally and emotionally coming to terms with it.”

Name: Erika Page, Social Media Specialist & Blogger
Age: 29
Location: Fredericksburg, Virginia
Years with Vitiligo: 22
Instagram: @erikapage

I got vitiligo when I was seven years old. The spots appeared along my spine and my mom knew what it was because my grandmother had lived with vitiligo for most of her life. The doctor confirmed it and after discussions about treatments – and some use of a steroid cream – we decided to forgo treatment and pray for the best. Twenty plus years later, vitiligo has taken over 100% of my skin and is slowly taking the pigment from my hair and eyebrows. You might not know it though, because I wear makeup and full-body tanner almost every day. Perhaps it’s a security blanket. I still can’t quite mentally grasp this change and am still holding on to the sun-kissed girl I was as a child.

Growing up with vitiligo was difficult, although I often kept my pain to myself, choosing to put on a happy face for the rest of the world to see. As long as I was okay with my skin, I found most other people were too. But at night, I remember crying myself to sleep and feeling like I didn’t deserve friends. Living with one color of skin again makes life easier. I don’t have to deal with stares, rude comments or frequent feelings of sinking self-esteem. But at the same time, the depression, social anxiety and wavering confidence are still a part of me because that was my life for twenty years. I get the feeling that sometimes people think I’m “good” now. While it’s certainly no longer a roller coaster, vitiligo is still just as much a part of my life as it always has been. I’m still mentally and emotionally coming to terms with it and that is a journey with no end in sight.

“I deal daily with the reminder that I’m drastically different from my family and feel like I’ve lost my identity.”

Name: Sheetal Surti, Commercial Finance
Age: 39
Location: Birmingham, England
Years with Vitiligo: 32
Instagram: @tallytal999

My first spot appeared behind my ear when I was seven. The next fourteen years were a blur of treatments coupled with strict diets, medication and yoga. At age 18, I didn’t want to chase a cure anymore and convinced my parents to let it go. By the time I was 22, I had lost all of my pigmentation. It was about 10 years after that that I noticed freckle-like spots appearing and disappearing every now and then on my arms. Today I stress about my pigmentation returning and going through what I can only describe as mental trauma again. Vitiligo is turning my eyebrows and eyelashes white and I never let anyone but my immediate family see me without mascara or eyebrow makeup.

Growing up with vitiligo and the taboo surrounding it, I was so ashamed of my skin. I hated dressing up because I always felt ugly. I hated having photos taken. Even after I lost all my pigmentation, I wouldn’t talk about it and just let people assume I was white. It was only about five years ago that I started opening up about it and only a year ago that I put a picture of me at age 17 with patches everywhere on a public post. My husband hadn’t even seen the picture before. It fascinates me that people assume that vitiligo isn’t an issue for me anymore because I’m one color. I deal daily with the reminder that I’m drastically different from my family and feel like I’ve lost my identity. I’m constantly having to explain why I have my name and that both of my parents are Indian, as if I’m not sure and could be wrong. My kids also get questioned a lot about why their mother is white and my husband and I still get rude glares from people who think he married a non-Indian.

“Today I don’t feel like vitiligo holds me back.”

Name: Gabriela Fano, Apple Technical Support and Vitiligo Vlogger
Age: 22
Location: Appomattox, Virginia
Years with Vitiligo: 17
Instagram: @simplygabyofficial

I first developed a vitiligo spot on my chest when I was five years old. It didn’t fully cover my body until I was about 12-13 years old. Once it spread, it remained the same for years, covering about 80% of my body. I was 19 years old when I noticed a small, freckle-like brown mark on my chest. I didn’t know what it was, but over the course of a few months, I noticed a few more, and now my legs, face, chest, stomach, and arms are all full of dots and speckles with my original brown skin color. Today, my vitiligo still covers about 70 percent of my body.

My initial reaction to vitiligo was denial and confusion. I only began to accept it when I posted my first picture on Instagram showing my vitiligo. That was the turning point. Today I don’t feel like vitiligo holds me back. It was a long process to get to where I am today but I’m so glad I took that first step. I find that I am more accepting and open to how my skin wants to be. I will miss my vitiligo if it goes away.

“Universal vitiligo is not the better vitiligo.”

Name: Monica Waqanisau, Gender Equality
Age: 31
Location: Suva, Fiji
Year with Vitiligo: 6
Instagram: @monwaqastyle

My vitiligo started with very pink lips and then graduated to a few tiny white spots on my right hand. After that, the progression of my depigmentation transitioned very quickly within two years. Today I am about 95% depigmented but have noticed some repigmentation on my arms, legs and face. It’s been a rollercoaster transition and I don’t really know what to expect.

While it’s been a little easier being one color again, it’s also interesting and a bit of a struggle having to deal with the racial dynamics of being white. I was brown and sun kissed for most of my young adult life, born of brown parents and brought up in a strong Fijian and Pacific heritage. Nowadays I hear the most disrespectful remarks from fellow indigenous Fijians, wondering about my background and unaware that I’m also an indigenous Fijian who can speak and understand the language. It hurts and I still grapple with this phenomenon. Having others assume I am a foreigner in my own country is unsettling and when I think about how this condition has people questioning and diminishing my indigeneity, it makes me angry.

Universal vitiligo is not the better vitiligo. It’s a different experience for everyone and a little empathy goes a long way. Never assume you know how someone is dealing with vitiligo, even for those with universal vitiligo. For me, as a woman of color, I struggle with how this condition threatens to undermine my indigeneity – but only if I allow it.

Do you live with universal vitiligo? What has been your experience?