Thriving, not just surviving with vitiligo.
How I fought the social stigma surrounding vitiligo.
“I swear by my life and my love of it that I will never live for the sake of another man, nor ask another man to live for mine.”― Ayn Rand, Atlas Shrugged
I was born and brought up in a humble middle class family. While my parents believed that all children are God’s children, most of the family members and society in general had their gender biases. My father never let the society bias affect us and gave us all the privileges and tough love that we deserved.
Being the youngest in my family, I got all the love and attention from my parents and my sister.
I was great in academics, often in top 3 in the class, and participated in extra curricular activities. I also loved speaking in assemblies, especially the news! I loved being on stage! For most of my school life I have been the class monitor or the prefect. My people were very proud of me.
When I was 12, I was diagnosed with vitiligo, a skin condition which affects 1% of the world population and 8% of Indian population. It can happen to anyone regardless of their race, gender or age. The skin randomly loses its ability to produce melanin and hence loses its color. And, that’s it! It’s not contagious, it’s not life threatening, it’s not a requisite to any profession in the world.
But the social stigma plagued us wherever we went.
“What happened to you?”
“Did you burn yourself?” They would ask me.
“Aren’t you feeding her well?” “She is a girl after all, who will marry her?” They would ask my mom.
The stares never stopped. The questions never stopped. In fact, they got worse.
Appearance, especially that of a girl, is really important in our society. And they can get really cruel and mean if you don’t have a decent one as per their standards. And I was different, really different! During those times I faced two biases — skin compounded on gender.
The direct effect of this was my loss of freedom. I was asked to not come to gatherings. They asked my parents to hide their child. I was asked to wear turtlenecks and makeup in Indian March to avoid any issue in my cousin’s wedding. I was suggested to keep a low profile to avoid drawing attention! This was happening to a girl who was always chirpy, inquisitive and curious! Who loved being around people! The world wanted me to stop being myself.
This was my first experience of what it felt like not to be included.
While my parents desperately tried every treatment possible, the coping mechanism of the teenager in me was that of a rebel. I refused to beg them to include me, to accept me, I refused to respect the people who didn’t respect my family.
But I also refused to hide. I don’t think God designed me to be shy or timid. I was not gonna let a bunch of people dictate how I lived. They were gonna stare anyway, they were gonna talk anyway, so I might as well do me. Nothing, absolutely nothing in the world could stop me from being who I wanted to be. I was still bright in school, I still participated actively, I still spoke to people. I still showed up, regardless. My confidence refused to get shaken by what people’s opinion of me was.
I didn’t know any other way, honestly. If anything, this made me more tough and resilient, more unapologetic, more vigorous.
Of course this wasn’t easy. We didn't have social media in those times, therapy wasn't as easily accessible as it is today. So, I had to deal with this my way. There was a lot of crying, mostly away from my family cuz I wanted to be strong for them. I didn’t want anyone to see my vulnerability. There were bouts of anger, frustration, days of isolation, the “why me?” questions.
But I rode out the storm.
And, here I am. My boat is not broken. I have added some reinforcements on the way to make it stronger than it originally was.
I would like to conclude by sharing something that Winnie Harlow, a famous supermodel, said to Drew Barrymore, “Everyone goes through something, everyone is different, and that’s what makes us the same. Then what is normal, really? Four feet tall is normal, curly hair is normal, no hair is normal, albinism is normal, vitiligo is normal, freckles are normal. We are all normal and we are all different. And there is beauty in that difference.”
So, don’t let that difference or similarity dim your light!
I dedicate this story to my family and friends who have been my constant pillars of support and last but not the least Architect_pritika for always believing in me.
