Why I stopped undergoing treatment to make my vitiligo go away because it's not something that needs fixing.

“I stopped undergoing treatment to make my vitiligo go away because it’s not something that needs fixing”

One woman shares her experiences with vitiligo, from feeling angry about her white patches to how she learnt to love her skin.

I developed a skin condition called vitiligo when I was just three years old. It’s the result of a lack of a pigment, called melanin, in the skin. It started as a visible white patch on the back of my hand, no bigger than a five pence coin. It didn’t take long for the patch to spread covering my arms, legs, body and worst of all, my face. I’m mixed race, but I look 70% white. 

My parents refused to cover my skin and they would send me to school in a skirt and T-shirt with my patches on show. As a child, I was blissfully unaware that I was “different” until a boy in my class suggested my skin was contagious. I remember feeling uncomfortable that day but I quickly shrugged it off, as I did on those occasions when my classmates would compare my skin to that of a cow or zebra.

But everything changed at age 14, all the taunting got to me and I severely lacked confidence, refused to talk about my skin when asked about it and it just made me angry. I would avoid swimming lessons by forging notes from my mum to my PE teacher. However, I quickly ran out of excuses and eventually, I had no choice but to face the kids around the poolside. Just before each lesson, I would run to the changing room to undress before all the other girls piled in. I’d then stand alone, having an internal conversation with myself, trying to build up the courage to make my way to the pool. It was the most anxious I ever felt about my skin.

What it's like to be a young woman with vitiligo
“At school kids would say my skin resembles a cow or zebra”

As I moved into my 20s things became a little easier, especially when I discovered fake tan. My mum was frustrated by the ridiculous amount of layers I’d apply as it made me look orange, but frankly, I didn’t care as it was the only thing that would give me a little confidence to leave the house wearing revealing clothes. 

For me, dating and vitiligo didn’t go hand in hand, it was trickly. Whenever I was present in a man’s company, my skin would feel like the “elephant in the room”. I’d spend ages beforehand deliberating whether I should pre-warn a guy before meeting him, explain to him over drinks that I have a visible skin condition or wait for him to ask. To avoid the situation, I would often hide my hands under the table so that I could feel normal for as long as possible before it came up in conversation. A turning point came one evening when I was on a date with a lovely guy and I been shielding my hands as I usually would, when suddenly he took my hand, held it in his and told me my skin was beautiful and proceeded to tell me how his friend had vitiligo on his face.

Those kind words didn’t take my insecurities away though, so when I turned 30, I began undergoing UVB Narrowband treatment, a form of phototherapy treats skin diseases. This treatment helps the skin regain its ‘natural’ colour but it doesn’t stop the patches from spreading long term, as they can always come back. The intense program would require twice-weekly hospital visits during working hours and I had no idea how I was going to explain that to my boss. There was a small risk of skin cancer which petrified me but I still proceeded.

During the visits, I was required to stand inside a tanning booth for up to four minutes. I’d wear sun cream on the sensitive parts of my body to prevent burning. However, there was the odd occasion when my skin did burn and would go so red that the friction from my clothes would make me squirm in pain. I felt the pain was worth it.

Six months into the treatment, my skin colour started to return and the white patches reduced significantly. I was over the moon, so I booked a beach holiday and bought a year’s worth of swimwear to make up for all the lost years avoiding the sun, sea and sand. I met a friend for dinner after my voyage when she asked me how the treatment was going and I told her that it was amazing. She responded in a way that quickly brought me back to reality. “Natalie, your skin is part of who you are…why are you trying to change it?” I looked at her in absolute disbelief. And her words played on my mind for ages. I started to think about what I was putting my skin through, it was such an intense treatment and for what? To erase something that was part of who I was.

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Despite the feelings of guilt that built up inside me, I continued with the sessions but secretly prayed that some, if not all of my patches would remain. I had committed to 12 months and wanted to see it through. At one point, I desperately asked the nurses if I could wear gloves inside the booth so that I could keep my bright white hands. I think I knew deep down that my friend was right. 

After a year of treatment and 103 sessions, I was advised to stop because of the intensity of the light and the potential long term damage it can cause. I was thankful most of my white patches still remained. I left that appointment knowing I needed to work on changing my negative mindset rather than my skin. And I did just that. In that same year, I was invited to appear on London Live to speak about my experiences with vitiligo, I remember thinking “I’m not ready to admit that I have vitiligo”. After some external convincing, I decided to appear on TV and it was from that moment I was finally able to say “I have vitiligo and I’m okay with it”. 

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Now I am doing things I could only dream of, like appearing in a beauty campaign with Dove in 2019. I am an ambassador for the condition working closely with charities such as The Vitiligo Society and Changing Faces to help raise awareness and support diversity and representation. And I share my story on social media, connecting with others globally and helping those struggling to accept their skin. It’s the most rewarding part of all that I’ve experienced.

Never could I have imagined that the hate I once had for my skin would turn into love and self-acceptance and give me the confidence to do so many things I avoided in the past. Now I love showing off my skin and revel in the fact that it makes me unique. The story of my life is painted on my skin and I wouldn’t have it any other way.

Credit: Courtesy of author Natalie Ambersley

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