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Living With Vitiligo: Finally Greeting The Elephant In The Room

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By Durga M Sengupta:

“OneTwoThree… GO!” my best friend yelled, and soon we were flying up the school ramp, the one place we were categorically told to not run. Besides, the seniors studied in the building, and so it was more of a thrill.

Despite being a tall, thin fourth-grader, I wasn’t much of a runner. I ran all the way to the top anyway, knowing full well that she’d be there, with her hands on her waist, staring down at me with a half-amused, half-disappointed look on her face.

“Here, drink some water, slowpoke,” she teased, handing me her fancy sipper.

As I drank the water, she suddenly said, “What’s that on your chin?”<

Not knowing what she was pointing out, I went and checked in the closest bathroom mirror. And there it was, my first, perfectly round, blindingly white, teeny-tiny spot.

It has been 18-odd years since that day. Today, at 26, I have 131 white patches on my body. Or at least, that was the last count, before the dark brown lines on my hands started disappearing.

My friends and family have over the years become so acclimatised to its presence, they’d probably not recognise me with a strong concealer on. Honestly, I’d probably not recognise myself in the mirror.

Description: In this picture of Durga, she is smiling, and wearing a pink top and blue headphones. In the background, there is the sea, and to her right, a small brown dog sniffs around the rocks.
In this picture of Durga, she is smiling, and wearing a pink top and blue headphones. In the background, there is the sea, and to her right, a small brown dog sniffs around the rocks.

And so, we don’t talk about it. Besides, vitiligo is an awkward subject anyway. People living without the skin condition, which is a high percentage of people around the world, don’t know how to address it. They don’t know if they should either, at least not in the drawing rooms we inhabit.

And honestly, I’m not sure how to start a conversation about vitiligo either. I joke about being a reverse panda, always drawing parallels with fluffy creatures with eye-patches — my most visible feature — just to remind myself that I’m rather cute. Or maybe it’s just to make some sense of being a brown person who is, in parts, also albino white.

My friends often mention, in passing, the admiration they have for me. Without directly addressing the difference in appearance, they tell me how awesome it is that I’m so well-adjusted.

Others, not so kind, suggest that I look better in longer sleeves and floor-length skirts, never mind that these often make me look fat. Fat, I have come to understand, being a more globally accepted issue, is understood better. And us humans generally prefer dealing with what we understand, and not everything we see.

But interestingly, none of these people point out my patches with the confidence strangers do.

As a child, I would often have strangers on trains, in malls, in buses come up to me and/or my family and suggest this wonderful new medicine that worked for their sister/aunt/cousin/son. Always wonderful, always new — the medicines never really worked for me.

I was instructed to cease conversation if it happened, told to look away into the great distance like we often do with beggars on street corners.

As an adult, I’ve learnt to recognise that casual look people give me that slowly builds into a stare. A stare that mostly stems from unabashed curiosity, and builds on innocent ignorance.

On some days the stare builds into pity, on others it rears its ugly head as disgust. But on no day would I confuse my personal brand of stare with the creepy one we all know so well.

Some strangers would check their stare and choose to talk to me instead. These are mostly cab or auto drivers looking in their rear-view mirrors, or well-meaning parlour ladies wondering why I wouldn’t cover my patches up.

I am acutely aware of the privilege that shelters me from vitiligo becoming an actual bane in my life. It doesn’t come in the way of my education, my work, or my everyday life. It won’t be a deal-breaker in my marriage, like many strangers have warned, if or when marriage happens.

I have the privilege of not taking medicines, of not staying indoors, and I certainly have the privilege of people being nice to me.

Description: This is a selfie of Durga — she is looking directly at the camera and smiling. She is wearing a red kurta.
A selfie of Durga — she is looking directly at the camera and smiling. She is wearing a red kurta.

It is with that realisation I write this. Because where’s the conversation about vitiligo for the thousands who do not have my privileges? In India, 2–5% people suffer from the skin condition. To put that in context, according to the Census from 2011, the entire population of Kerala is only 2.76% of India.

(And oddly, I’m both half-Malayali and have vitiligo.)

The conversation about vitiligo isn’t important because it’s a debilitating disease. Not a bit. If anything, we just need to be more careful with our skin out in the sun. But that’s about it.

No, it’s important because so many people suffer from the psychosocial consequences of the taboo associated with it. Ironically, for a country obsessed with white skin, vitiligo is seen as impure, unattractive, and as more of a concern than the actual illness.

It’s also important to know where to start because I absolutely don’t. The likes of supermodel Winnie Harlow do make us feel good, but only as much as a plus-sized model would. Winnie Harlow’s body is otherwise perfect, much like the flawless skin of every plus-sized model.

They signify a change, but they certainly don’t represent all of us. And more importantly, they’re not even accessible to all of us.

So I’m just looking to start a conversation here, waiting to hear your stories, about people you know with vitiligo — people in your families, at your workplace, or even you.

I want your criticism as much as your love.

Let’s get real, please? I’m tired of the polite silence.

Durga is a half-Bengali half-Malayali from Delhi who now lives and works as a journalist in Bengaluru.

This post was originally published on Skin Stories.

You must be to comment.
  1. sonia hariramani

    Hey Durga! Such a nice write-up.
    Well I don’t know much about vitiligo, but my dad started developing white patches on his face and hands before 6 years. It was tough for him as well as us when it started and growing too fast altogether, but now we have all accepted and much happy about it.

    I would say just keep enjoying your life. You are beautiful!!
    – Sonia

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Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

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