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What It’s Like to Live with Vitiligo Around the World

What It’s Like to Live with Vitiligo Around the World

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Over the past decade, acceptance and visibility for vitiligo have continued to grow – and that’s good news. However, we still have a long way to go when it comes to building awareness both in the United States and around the world.

What does living with vitiligo look like around the world? We spoke with seven women from around the globe about their experiences living with vitiligo and whether these experiences have changed with time. Many of them shared that they felt the same sentiment for years: loneliness.

Read their stories and be inspired by the community you share with the thousands of others around the world as we continue to advocate for global awareness. 

Nadia C. | 38 years old | Cape Town, South Africa

“I’ve had vitiligo for six years. It’s been quite a lonely journey. My self-esteem plummeted when I was diagnosed and especially when it started spreading. I longed for a community or even just a couple of individuals to grab a coffee with or better yet, a glass of wine. I don’t often come across others with vitiligo but the ones I have met are lovely and warm and seemed to have embraced their condition. I never truly had the option of covering my vitiligo as it started on my hands and then spread to my face. It’s been a wild ride that is for sure. Incurable and unpredictable, I simply have to learn to accept it, it’s essential. I hope I will get there one day.

I have found the odd example of a local brand that features a vitiligo model on their ad campaign which is always nice to see. So on that front the way vitiligo is seen in South Africa has definitely changed. However, vitiligo treatments such as excimer laser or protopic creams are not covered by medical aid and aren’t seen as a medical condition. Do they not know how it affects all of you?”

Rachana Seth | 40 years old | Bangaluru, India 

“I have had vitiligo since I was five years old and it wasn’t easy as a child to be picked on for the way I looked. As a girl your looks are most important in a society where the ultimate aim is to get a girl married off based on her external beauty. It was after the birth of my daughter that vitiligo for some reason spread in a big way on my body. It was a difficult time for me to accept this big change but it was a blessing in disguise as I learnt to love myself inside out and not judge outward appearances in anyone. I started my journey to spread body positivity for others after my own journey with vitiligo.

The way vitiligo is seen in India has changed in a big way. The concept of beauty has changed in India in a big way and a lot of emphasis is given to beauty inside of a person. A lot of talk and awareness on body positivity is happening in India and women are learning to embrace their bodies just the way they are. I am very fortunate to be a part of this journey and spread the message through Instagram. By talking about my journey and modeling in spite of the way I look I hope to inspire others to accept themselves.”

Thia | 38 years old | Tangerang, Indonesia 

“My vitiligo was identified when I was 20 years old and it was only some patches under my collarbone. It didn’t spread until 2011 when I was pregnant with my first child. Living with vitiligo at first was scary and I felt unconfident. I didn’t meet people with vitiligo to talk with or to share my fear and worries. I tried to pretend not to care about the way people see me and my vitiligo. Then in 2010 I moved to East Java and here they said vitiligo was caused by eating a kind of fish. Surprisingly, here, I sometimes meet people with vitiligo, but never know how they struggle with it. So, as far as I know, I live with it alone and face it by myself.

I covered it at first, and it was not so difficult because the patches are on my body. But then it spread to my fingers, hands, and elbow after 2012. In the last two years, I learned that people see me because of myself, my skills and my abilities. Yes, they notice the vitiligo at first, and some ask about it and I explain it. I see the way they stare at my hands when I am talking and explain things with hand gestures. But now I only feel funny when I see that happen. People will not underestimate you for long when they realize that you have skills that they appreciate. The physical appearance with vitiligo? Soon or later they will ignore it and will get used to it. And making yourself smarter, better, kinder – all those basic values outside the physical appearance – will also make you appreciate yourself and that is the most important. When you know your value, you have confidence. And with confidence, wherever you are, you can face the world, because everything starts with ourselves.

Nowadays I think the way vitiligo is viewed in Indonesia has changed. People easily have access to find any information from the internet. Young people with vitiligo now have more freedom to be appreciated because of their uniqueness. Inspiring stories are also written and shared by people who have vitiligo. I’ve become more grateful, I guess. I am blessed with a healthy body, the ability to do everything like other people. What I want to say is, we need to appreciate ourselves first then others will follow.”

Elisabeth van Aalderen | 34 years old | Haarlem, Netherlands 

“Approximately 10 years ago – I was 25 at the time – I started to get tiny white spots on my left hand. After a few weeks the small spots turned into one bigger spot. That’s when it all started. Today my skin is 60% covered in vitiligo. When I was diagnosed, I started to do skin therapy: creams, lightening-therapy, a gluten-free diet, a vegetarian-diet, no sun, a lot of sun, yoga – you name it, I tried it. Nothing worked. Eventually I stopped doing treatments because I didn’t want my life to be like that. I can’t change the fact that I have vitiligo so I started to embrace it.

Having vitiligo is a big part of my life. I believe that I have vitiligo for a reason. It’s my biggest and most difficult journey of self-acceptance. It’s okay to struggle, but when you overcome it and accept your uniqueness it makes you such a powerful woman. And what’s not to love about that?

The media landscape really made a big change in the past two years. In the Netherlands inclusiveness in editorials and campaigns has grown massively. A lot of the women I photographed for my project ‘Shades of Pale’ have signed with modeling agencies and it brings so much awareness. You can also see a lot more vitiligo models in campaigns like Zalando, Footlocker and Studio Kroewe. All brands with a focus on inclusiveness. 

Personally I’ve experienced a lot of changes too. People are softer to me and less judgmental, just because they know what it is, and they know it’s just something people have instead of something scary. I love that about the time we live in. I wish this had happened years ago.”

Alma Civa | 29 years old | Tuzla, Bosnia and Herzegovnia

“I’ve had vitiligo for eight years but I’d never heard of it before I got diagnosed. I hadn’t seen anybody with it in my city either. My first spots appeared around my eyes, and I wanted to believe they would disappear if I ignored them. After a dermatologist told me that it’s vitiligo, I did a little bit of Google research.

I remember that in the summer of 2017 or something like that I saw a young man with vitiligo and then in 2018 I saw a girl who works in a local coffee shop whose hands were covered by vitiligo spots. They were the only people with vitiligo I saw in my city. Even though it is rare, I still can’t say that people look at me in a strange way. Maybe some of them do, but I haven’t had a negative experience. I haven’t heard a negative comment either – at least not in front of me. I think my biggest struggle was self-acceptance.

Today, I can’t say that people really know about vitiligo at all. Probably just those who know somebody with vitiligo. Most people around me learned about it with me. Change is pretty slow, but  I feel that social media has helped, especially Instagram. I don’t know what kind of mindset I would have if I hadn’t connected to this huge community on Instagram. Vitiligo is rare, so it’s easier to find a global community rather than a local one. In any case, the biggest change had to and did happen inside of my mind. It doesn’t matter where I live or where I will live in the future, I need to accept my skin in order to be able to lead a “normal” life without missing out on things because of my spots or letting my spots control my choices and daily activities.”

Natalie Ambersley | 38 years old | London , UK

“I’ve had vitiligo for 35 years. Vitiligo was a relatively unknown condition when I was born during the early 80’s. There was no one in my school with vitiligo and very rarely did I see anyone else with the condition, and so for a long time, I thought I was the only one that had it. There was one support group, The Vitiligo Society, which still exists today and has been going for 35 years. My mum became a member shortly after I was diagnosed as she wanted to understand the condition and know how to support me, as I got older. 

Growing up, British magazines didn’t feature models with skin conditions and it’s one of things that really stands out for me as a reminder of why I struggled to see myself as ‘pretty.’ To me, models were beautiful and if I couldn’t see girls with vitiligo in the magazines, which I loved, then I simply couldn’t be beautiful like them. It was something that played on my mind for many years. 

Things have definitely changed in the UK. The vitiligo community has grown significantly over recent years and I would say that is partly due to Winnie Harlow giving the condition a platform and also the growth of the body positive movement, which is pretty strong in the UK. Now we regularly see people with vitiligo featured in campaigns for well known British brands which is positively impacting those with the condition. I have been featured in campaigns with British brands such as Dove and Stay Wild Swim and have also had my story published in British magazines such as Cosmopolitan, Stylist and Dare Magazine, all with the purpose of showing others that we too, should be represented in the media.”

Sharon M. King | 34 years old | Boston, MA, United States 

“I was diagnosed in 1999 and was told “it’s just cosmetic.” It all started with a small spot under my left eye. My parents were not alarmed because it runs on my dad’s side, however I have the most visible case. When the creams the dermatologist gave me didn’t work, he offered the UV box which had far more side effects than it has now. I was an athlete and the treatment was time consuming so when I declined that was the extent of the support I received. I was often asked if I was burned or rudely asked “what’s wrong with your skin?” I avoided the only two people I saw with vitiligo because I wasn’t ready to talk about how living with vitiligo made me feel for many years. I feigned confidence until I was able to accept my skin unconditionally in adulthood and that motivated me to start Litty Ligo.

My family and friends were – and continue to be – very supportive and definitely bolstered my self-esteem. I never felt the need to cover my vitiligo because it was on my hands, elbows and knees. To me, it was another thing that would stress me out so I opted out.

More recently, there have been so many great efforts to make vitiligo not only more visible but easier to understand. Celebrities like Winnie Harlow have inspired people to come out of their shells and embrace themselves publicly. There have been so many innovations in vitiligo support from groups and social media to books and conferences. 

There are many options to share information about vitiligo which makes it easier to educate people such as websites and videos. All of these factors have changed me and my perspective of living with vitiligo. Being exposed to so many people with vitiligo has made finding ways to accept the skin you’re in far less complicated.”

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