Images: Kaye Ford @ Fordtography.
The skin condition vitiligo received global scrutiny over 20 years ago now, when in 1993 a certain King Of Pop revealed to Oprah Winfrey that he was a sufferer. Due to the lack of knowledge surrounding the condition back then, combined with Michael Jackson’s reluctance to talk about his vitiligo in any great detail, the conversation never really gained momentum. Fast-forward to 2014 and a young teen from Toronto, Winnie Harlow, became a contestant on America’s Next Top Model, and eventually enchanted the word due to her beauty and determination and sassy personality. What made Winnie equally memorable was her prominent vitiligo, which she didn’t shy away from revealing, in fact, her demeanour was one of unbridled confidence.
Today with the popularity of social media, many with the condition are taking to their platforms to speak openly and unashamedly about living with vitiligo, which is said to affect over 74 million people worldwide. One such woman is Natalie Ambersley, a passionate and outspoken ambassador for the condition. We caught up to learn more about the work she’s done to raise awareness.
Vitiligo affects 74 million people worldwide, why do you think there is so little awareness of it in society?
Back when I was growing up, conditions such as Vitiligo weren’t viewed in a positive light. There was a lot of stigma around being ‘different’ and people like myself, didn’t fit into the standard type of beauty. Because of this, it prevented us from being open about who we were and instead we chose to cover our skin and deal with the challenges that came with being different, behind closed doors. How we looked wasn’t something we wanted to make a conversation.
Also, we were never exposed to people that represented people like us, or anyone with skin conditions for that matter, because it was wasn’t ‘cool’, it wasn’t attractive and so it wasn’t something that magazines or the media were prepared to write about or exploit.
Over recent years, things have changed for the better, especially with the likes of Winnie Harlow breaking the barriers to diversity and proving that we too, can be beautiful and fearless even though we don’t necessarily fit into what is seen as the ‘norm’. It’s the reason why Vitiligo has become an interesting topic to talk about.
How old were you when you developed Vitiligo, or is it something you’ve always had?
The first signs of Vitiligo came when I was just 18 months old. It started as a tiny patch, no bigger than a five pence piece, on the back of my hand. During the time in which I grew up (early 80’s), Vitiligo was relatively unknown, so it was incredibly difficult for me to get a diagnosis straight away. It took a little while to fully develop, however, by the time I was 4 years old, I’d become a mixed race child with skin that was 60% white! Developing Vitiligo so young has meant I’ve never known myself without it and sometimes when I look back at baby photos when I didn’t have it as much, it looks bizarre not to see the patches on my skin! Evidently, it’s always got worse and never better
What was your parent’s attitude to you developing vitiligo, were they aware of the condition at the time?
When they discovered the first patch on my hand, my parents weren’t overly concerned because it wasn’t causing me any pain, wasn’t inflamed and was small in size. In fact it could have been mistaken for a birthmark! It was only when it started to spread to other parts of my body, that they started to panic and were desperate for answers. I was officially diagnosed by a Dermatologist when I was around 2.5 years old and it was then, they were told it wasn’t curable. My parents were distraught and couldn’t quite understand how this had happened, especially as there had been no history of the condition on either side of the family. My Mum felt particularly helpless as there were no support networks for those like me. She also knew there was a possibility it might affect my confidence and self esteem as I moved through my school years and into my adult life…. which it did.
The teenage years are notoriously difficult and is often the time when we just want to fit in. How did you navigate the tricky teenage years with a condition that so few still know about?
My teenage years were my worst years. A period I’d hate to revisit! I became very aware of the people around me and became very self-conscious of the fact I didn’t look exactly how my friends did. I literally thought I was ‘abnormal’! In fact, the more paranoid I got, the more my entire existence revolved around me having a skin condition. I absolutely loved PE at school and was a great athlete but hated that I had to wear a PE skirt and became anxious when I had to get ready in the changing rooms. I tried to avoid swimming lessons and during the summer, I would never wear summer clothes and instead kept myself completely covered. I was heavily influenced by teenage magazines, such as Just 17, Mizz and Sugar and the images I was mostly exposed to didn’t represent black or mixed race women, let alone those with Vitiligo! Thankfully, I wasn’t bullied because of my skin, but I was definitely an easy target when it came to name calling, kids often reminding me that I had skin that resembled a cow or being cautious about touching me in case they caught it! It was during this time, that I found it difficult to talk about how I was feeling, other than with my Mum. I became defensive and angry if I caught anyone staring and embarrassed if anyone asked me what it was. It was a really difficult period in my life to move through….
Michael Jackson is rumoured to have had vitiligo, and that’s possibly the reason why his skin colour changed so drastically through the years. What do you say to people who criticise him for lightening his skin to make it blend into a uniformed complexion?
I think it was such a shame that Michael Jackson didn’t use his voice to raise awareness. He would have had such a powerful influence, not only on those with Vitiligo, but in his ability to educate the wider world about a condition that affects 1% of the worlds population. Vitiligo is unique and so everyone deals with having it in different ways. Some people wont leave the house without covering it with makeup because they are embarrassed, whilst others embrace their skin and couldn’t care less about what people think of them. I don’t think it is for anyone to judge someone based on their choices, especially if they don’t have Vitiligo and so don’t understand what it feels like to live in world where we are judged heavily on appearance. Michael Jackson may have used bleaching creams because it was his way of dealing with the unpredictable changes in his skin, and no one has the right to criticise how he thought was the best way to manage and deal with it.
Do you think having a person in the public eye with more visible vitiligo like Winnie Harlow would’ve made a difference during your teenage years?
I’d be lying if I said I wasn’t a secret fan of Winnie Harlow! When she first emerged from ANTM I loved how fearless, feisty and strong minded she was! Having someone like Winnie around during my teens, I think, would have given me a more positive outlook and made me realise that the standard type of beauty, which I was used to seeing, didn’t actually exist. It would have also given me a story I could relate too, as so many elements of her life have resonated with what I experienced as a young girl with Vitiligo.
You are a brilliantly positive advocate for vitiligo awareness, how did you get to that place where you felt that you wanted to make a difference by opening up a conversation about the condition?
Thank you so much! For me, Vitiligo was a very taboo subject right up until my 30’s. I avoided talking about it, I didn’t want to be asked questions and I hid it from people when I went about my day to day life. But I got to a point where I realised I wasn’t really living for me….I was living life based on my belief that people were judging me because of how I looked. It became draining. I wanted to start going on beach holidays and wearing shorts in the summer and I knew I had to change and refocus my mind. Also, in 2013, I was approached by London Live to speak about my experiences as someone with Vitiligo. Initially, I was a bit unsure if it was something I really wanted to do, but after sitting on the idea for a few days, I thought why not! A few weeks later, I was in a TV studio, being interviewed by Claudia Liza Armah about how Vitiligo had impacted my life. It was only after the live recording, that it dawned on me that I’d actually allowed myself to be open with who I was…with an audience watching! It became an awakening moment…not just for me, but for those around me too. It became my way of saying ‘I have Vitiligo, and it’s actually okay….’. It was then, other opportunities to speak out started to present themselves to me.
Have you ever considered getting treatment or are you in place where you’re totally embracing of who you are?
I spent a huge part of my childhood visiting Great Ormond Street Hospital, trying different treatment options as recommended by my Dermatologist. When I was 12 years old, I decided I’d had enough, especially as all attempts to clear my skin had failed. I then decided to revisit the idea of treatment in 2013. I’d just entered my 30’s and treatment had come a long way since my childhood. I’d heard a bit about UVB Narrowband Treatment through The Vitiligo Society and social networking platforms, and was curious as to whether it would be something that would work for me. It was only 50% guaranteed to work, but it was a chance I was willing to take. There was also a small possibility I could turn completely white, which was something that made me incredibly anxious, as I knew it would be an outcome that would potentially strip me of my identity.
The treatment took 13 months and was fairly intrusive. Twice a week I would travel from home on the first train into London, to attend appointments at Guys and St Thomas hospital. Within 4 months, I was starting to see results, as my skin was re-pigmenting at an alarming rate. However, the more I saw that my natural colour was coming back, the more I felt as though I was erasing a big part of what made me who I was. I then started to doubt whether having treatment was the right thing for me. I decided to continue, but prayed some of my white patches would remain, which sounds mad after all that I’d been through! Thankfully they did! After I was discharged from hospital, I was able to do things I’d shied away from in the past, such as beach holidays, embracing fashion and wearing bright red nail varnish which I once thought was too bright for my white hands! I’d also gained a newfound confidence which felt liberating. I felt like a completely different person……and completely loved the skin I was in.
What advice would you give to women who aren’t as comfortable with having the condition?
The biggest problem I faced growing up, was craving acceptance from others. I allowed the thoughts of others determine how I should feel about myself, which stopped me from being who I truly wanted to be. I got to a point where I realised I was sacrificing my own wellbeing, which was unhealthy. As women, regardless of our flaws and imperfections, it’s important we recognise that we aren’t all here to look the same. Don’t let images we are fed in the media change how we see ourselves, or make you feel as though you should aspire to be a particular way. Look, appreciate others and no that how you look is equally beautiful, irrespective of any flaws or imperfections. The one thing ive learnt and live by is ‘there is no such thing as ‘normal’
Tell us about your documentary on BBC3 that recently aired, what can we expect to see?
I recently featured in the BBC 3 online series ‘Things Not To Say’ which covered the topic of Vitiligo. The aim of the series is to challenge the misconceptions of certain groups within society. People with Vitiligo often get asked the craziest of questions, such as ‘Did you develop Vitiligo because you have a white parent and a black parent?’ or ‘Do you really go out looking like that?’. The questions are that farfetched! The show featured a group of us answering such questions and revealing the truth behind how it makes us feel.
It was actually quite fun to record something a little more ‘tongue in cheek’ even though it really brought home how I was made to feel as a teenager. It’s good that I can look back and giggle at such assumptions, because it just goes to show, how little awareness there once was of Vitiligo and how much we need to educate people that such conditions exist. The others that participated in the show were great to work with and I loved that they oozed confidence and could openly ‘tell it as it is’!
Any final thoughts you’d like to offer?
I think it’s really important that, as adults we educate and teach children that it’s okay to be different. We aren’t all going to look like our friends, peers or even family members, and children in particular, need to understand that was never the aim when we were born. Who we are on the inside is where the real beauty lies….
I personally, would love to see diversity as part of the school curriculum as I think its important to instil the idea that we should respect, treat people fairly and not isolate people because of a disability or skin conditions such as mine. We shouldn’t be blind to the differences of others and it’s only with education, that we begin to instil what could be important life lessons in the long run….