What’s It Like To Live With: Vitiligo
What It’s Like to Live With explores the stories of people who see and experience every day a little differently.
My journey with vitiligo is about a decade old. I don’t regret the fact that I’m suffering from a condition that is incurable, but the fact that I’ve wasted most of these years hating myself because of it.
It started with a little dot on the top of my lip. I was 21 then. It had popped up right in the middle of a time when my friends and I had begun to go clubbing, were allowed vacations and dates. I thought it was just a salon procedure gone wrong and waited for a few days to subside, but it didn’t. My mother had started to get worried and took me to a dermatologist immediately. I was diagnosed with vitiligo, a disease that causes the loss of skin color in blotches. The more worrying part was not that I had it, but because nobody can predict the rate and extent of it in the beginning. I could get it on any body part; it could remain restricted, or spread over time.
At that point, I didn’t understand why my parents were reacting like I had a fatal disease. They were sad all the time, always worried, and I didn’t know what to do because it wasn’t restricting my movements and I wasn’t feeling sick from within. The only way it had started to affect me was the way I had begun to socialize.
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At first, when it was restricted to some portions of my face and wasn’t very prominent, I met only those friends whom I was close to, and went out with them. But when it had started to spread to my hands, legs, feet and chest, I stopped meeting them, too. I had no way to get out of lectures in college or tuitions, so I did go for them, but reluctantly.
I started to wear clothes that would hide the blotches as much as possible. That meant, no shorts, skirts or open sandals, and only full sleeves. Obviously, it was evident that I was doing so because I wanted to hide my skin, because there was no way I could hide the patches on my face. I stopped playing football and basketball for college because the uniform was a pair of shorts and a t-shirt. I regret doing that to date. I stopped attending friends’ pool parties because the clothes I had chosen to wear would look inappropriate for that event.
Years started to pass, and facing new people felt like a challenge impossible to conquer. First there were interviews for my internships, then jobs and then meeting and facing new clients for a sales job I had chosen for myself.
I had seen more serious vitiligo patients with the extent of their problem worse than mine, but that didn’t make me think that I was lucky. I kept cursing myself, trying to get out of social situations as much as possible, even client meetings to avoid glares — and, most importantly, unsolicited advice on how I should’ve tried everything from herbal remedies and poojas, to skin-lightening treatments. I don’t remember a time when I was among new people and someone didn’t walk up to me to ask what and why it happened, and me being helpless because I really didn’t know or have the answers.
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It was when I turned 27 that I finally started to take control of the situation and get out of a self-pity and being-embarrassed-all-the-time mode. My parents had begun to get worried about who would marry me. I had decided that enough was enough: Nobody should have to look at how my skin was in order to get married; they would marry me if they saw my confidence and looked at my achievements. I had achieved what I set out to, but was still lacking in confidence. And that’s exactly what I started to work on.
I woke up each morning and told myself to accept it and embrace it, rather than try to hide it. I wore what I felt like — from shorts and skirts, to even swimsuits when I had to. I stopped putting makeup to hide the patches, but wore it only to feel good. I started showing up at events more and more, met more people and took charge of going out and doing more client meetings. I thought that was the only way to overcome my feelings of inhibition. It wasn’t about other people anymore, it was about me — and I was the only way I could help myself.
One of the best things I did was to tell my parents to stop looking for boys. I went on dates and told them I’d find people my way. I would say that the experience has been a bittersweet one. Some think it’s contagious and refuse to touch me; some others say they enjoy being with me but are scared of making a commitment. I may never find a life partner, but I’m thankful that I’ve found myself again.
This interview has been condensed and edited for clarity. As told to Anubhuti Matta.