What it feels like… to have vitiligo

What it feels like… to have vitiligo

I absolutely dreaded swimming lessons every week at school. Most of the time, I’d forge notes from my mum excusing me from the class just so I could avoid having people see me wearing a swimsuit.

When the excuses ran out and I had to go, I’d hide in the changing rooms trying to pluck up the courage to join my friends around the pool.

My extreme aversion to letting people see my body was because I have vitiligo and it made me feel anxious and self conscious at the time.

I didn’t know anyone else with vitiligo. Occasionally, I’d pass someone in the street that had patches on their face, which was comforting but very rare. Not seeing anyone like me made me feel isolated and was a constant reminder of how different I was.

Vitiligo is a skin condition where white patches form on the skin due to a lack of melanin – the pigment in our skin. It can affect any part of the body but most commonly appears on the face, hands and anywhere there is a fold in the skin.

I developed it when I was just three years old: an age too young to say the word, let alone understand how it would impact me later in life.

My first patch innocently appeared on the back of my hand – no bigger than a five pence piece – and sat brightly on my mixed race skin visible for others to see.

Being so young and not knowing if it was causing me any irritation my mum took me straight to our GP. However, because it was so small he was unable to confirm exactly what it was.

Back home, my parents closely monitored my skin and prayed that it would disappear, however, it started to get worse. More patches appeared on my arms, legs and even my face. 

My parents took me back to our GP, who referred me straight to a dermatologist. The prognosis was that I had vitiligo and it wasn’t curable. My parents were distraught because they had no idea how bad it was going to get or whether it would impact me later in life. 

By the time I started nursery, I had white patches across around 70% of my body and I had absolutely no idea that I was different.

For all I knew, there were thousands of kids like me somewhere in the world, I just hadn’t come across them yet. Turns out I never would.

Hospital trips suddenly became frequent – which I loved, as it meant I got to play with the other children that were also there with their parents. I never really understood why I was there but I knew I was the topic of conversation.

I don’t recall my parents ever sitting me down and properly explaining to me what vitiligo was, however, they often reminded me that I was beautiful just the way I was.

How do you explain to a five-year-old that they have a skin condition, which made them different to all their friends? I later learnt that they didn’t want to alarm me or make a big deal out of it.

I was prescribed different steroid creams, tablets and remedies in the hope that it’d help me regain some pigment. Nothing worked – much to everyone’s disappointment.

My parents were well aware that my skin wouldn’t go unnoticed but that didn’t stop them from sending me to school in dresses, shorts and t-shirts. They were adamant that they didn’t want me to grow up with a complex about my skin.

Most children didn’t take much notice, but there was one occasion when a boy in my class reached out to touch me before jumping back and suggesting my skin was contagious. It was the first time I was singled out from everyone else, which alarmed me and made me question whether this was going to be a regular occurrence for as long as I had vitiligo.

During my teenage years, vitiligo became central to who I was – for all the wrong reasons. I struggled with those who couldn’t help but stare, felt embarrassed if anyone asked me questions and had convinced myself that everyone was judging me because of my skin.

Looking back, I realise just how untrue this was. It was my own paranoia that made me assume people were judging me, when in fact the only person judging me was myself.

I would wear long sleeved tops and trousers to cover my body, even during the summer months.

As soon as I left school, I started wearing makeup and bought endless bottles of fake tan to cover the patches on my body. My mum would complain that I had applied too many layers and that I looked far to orange, but I didn’t care. I felt like it was the only way I could go out and feel ‘normal’.

The turning point came when I was invited to speak on London Live.

The producer from the show had contacted The Vitiligo Society asking if they knew of someone who would be willing to share what it was like living with vitiligo. It was around the time Winnie Harlow was a contestant on America’s Next Top Model, which led to a natural interest in the relatively unknown condition.

I’d never spoken about my skin before – other than to my family – so the thought of appearing on live TV made me anxious.

I did it anyway and as I sat in the studio and openly spoke about my skin live in front of the camera, was finally able to admit to myself that I had vitiligo and I was going to be okay with it.

Vitiligo affects 1-2% of the world’s population, however, this is often challenged because there are many people out there that remain undiagnosed.

https://youtube.com/watch?v=qhUMgjBNsCg

Speaking out made me realise that it wasn’t my skin that was the problem; it was the negative mindset that I’d built up over so many years. That day, I made a commitment to myself that I needed to make changes.

Since then, I have been sharing my story publicly to help raise awareness and inspire others who may be struggling with a visible difference.

Most importantly, I’ve found a community online – which I discovered via hashtags such as #vitiligo, #vitiligobeauty and #skinpositivity. This is testament to how much people are openly embracing their skin.

Growing my own platform to where it is today has connected me with people from all over the globe. I have taken part in photoshoots, featured in magazines such as Cosmopolitan and Stylist and last year appeared in campaigns for Vita Liberata and Dove.

I’m also an ambassador for the skin condition, working closely with charities such as The Vitiligo Society and Changing Faces.

There are so many things I’ve learnt about having a skin condition, but nothing more important than realising self-acceptance starts with you first.

For years, I felt like it was my skin that defined me without even considering that I was a person admired and loved by family and friends because of who I was.

No longer do I fight to be perfect because I’ve finally accepted I’m perfect as I am.

You can follow Natalie on Instagram here or keep up with her blog Being Just Us here.

In this exciting new series from Metro.co.uk, What It Feels Like… not only shares one person’s moving story, but also the details and emotions entwined within it, to allow readers a true insight into their life changing experience.

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