Loving My Skin & Everything Within: Of Living With Vitiligo

Loving My Skin & Everything Within: Of Living With Vitiligo

Beauty is said to be skin deep but is rarely believed to be as such. Prying eyes and unsolicited advice often follow those who don’t align with a rather narrow definition of what’s ‘beautiful’.

Vitiligo is a skin condition that causes pigmentation loss in the skin. Termed ‘common’ in India, the country has roughly 1 million cases of vitiligo every year. A patient of vitiligo might actually be fine otherwise, but what usually hurts more than the condition itself is the social conditioning or the mentality of people towards it in South Asia.

Let’s say it as it is: People are judgmental and cruel. It’s one thing to not realise that certain things can never be controlled, no matter how much one wished they did, and absolutely another to still outrightly treat one miserably – despite knowing that certain things are out of one’s hands.

Ask 24-year-old Priya Lalwani who grew up feeling like an ‘other’ all her life simply because of a skin condition she couldn’t have helped. She did try. Her parents tried. Despite everything, the sheer misinformation amongst people around her and their inability to look beyond the spectre of cruel judgement made sure that she was subjected to maltreatment all her life.

As she gathers the courage to shed all those eyes off of her, she comes out and reclaims her narrative, and tells the world – ‘I Am Beautiful, Not Despite, But With It.’

Here’s Priya’s story in her own words.

On my 7th birthday party in 2003, a peculiar spot on my right ear surfaced and it wasn’t hidden for long from the world, because a stupid bandana tied surreptitiously to hide the spot came off during the party. It was my father’s mistake according to my mom.

Swiftly barging through the infant crowd, my father, now frowning behind his shaggy haircut, exclaimed in dismay, “but it was a tight knot!”

Some days later, while trying to catch a glimpse of my locks of grey standing tall at my mother’s dressing table, I saw my first, blindingly white spot. It took almost three weeks for the melanin to completely disappear from my hands, legs, and the back of my body.

By the time I was eight, hundreds of white patches had enveloped my body. My parents made me wear full-sleeved clothes all the time, including socks in the scorching summer Kota heat.

It also became a recurring topic within the family - my large, 22-member, tight-knit joint family. My spots found their way into every conversation.

“No one will marry her, she needs to excel in her career to be able to feed herself in the future,” said my mother, dejected.

“I’m sure that this treatment will work and in one year she’ll be all clear living a normal life like other kids,” my father was rather hopeful.

He was referring to the multitude of treatments I was subjected to. Several lakhs were spent on treatments that didn’t work. Countless hours were spent visiting doctors across the country, but all in vain.

At school, the situation changed drastically. Teachers now allotted me separate seats.

“My father said these spots are contagious and I have been warned to not sit beside you,” said my best friend, on her way to the adjacent seat.

The very next day, my mother was called to the school. The principal demanded that the shirt’s length be extended, and I was instructed to wear a floor-length skirt from thereon. In a school of 6000 children, I was now the odd kid no one dared to come close to.

While despising family gatherings had become a common occurrence, I found I was also not spared by strangers. Out in public, strangers would approach me in buses, malls, parking lots with unsolicited advice or unwanted medicinal remedies.

Today, at 24, it has taken much of my teenage years and adulthood to differentiate between a casual glance and a judgmental gaze. I have learned, slowly and painfully, not to let such stares - ignorant ones, pitiful ones, disgusted ones, which used to prick my skin, to affect me.

I am also aware of the privilege which has allowed me to live my life, even with my Vitiligo, without it affecting my education or career. Despite my family’s constant worry about marriage, I have the freedom to pursue my dreams. After nearly a dozen failed experiments, a treatment finally worked and after nearly 7 years of bitter powder-like medicine, my arms, forearms, and hands are now mostly spot-free.

And yet, I am constantly aware that there are thousands out there who do not have my privilege. Hardly anyone knows about Vitiligo- primarily because it is not seen as a fatal disease. No one thinks about the psychological toll it takes on the person bearing the marks. Despite having come to terms with it, I was unable to wear sleeveless clothes till I turned 23. Still not on board with an idea of a cropped t-shirt paired with knee-length shorts, my father tries his best to be supportive. It has taken immense courage to shake off years of an ingrained idea about what beauty is – which in my case was simply embracing the spots.

But recently, there has been light shone on my condition. Global supermodel Winnie Harlow adorns her perfectly symmetrical spots with infectious confidence. It started some conversations yes, definitely gave me a certain confidence to find comfort in my skin, but awareness about Vitiligo is still far from being accessible to the living rooms across the world. Those without the skin condition, still do not know how to address it … are clueless whether they should address it at all.

Ignorance is bliss – that is how the saying goes right? But what is blissful about a society treating your skin as if it will bite? Your ignorance is the only contagious thing here. They will call you a cow and laugh with their friends while their eyes are glued to your spotted feet on the street.

I am human. Yes, with spots, but they are beautiful. I am art – art that evokes awe but also requires the utmost protection when out in the sun. But that’s about it.

Now, my mother worries that I won’t find a husband, not because of my spots, but because I cannot cook!

Priya hails from the coaching powerhouse of the country – Kota. She now lives and works as a news producer with the business news channel, ET NOW, in Mumbai.

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