“Sometimes I wanted to peel away all of my skin and find a different me underneath.”
I would imagine that the worst complex a person can possibly live with is when one deals with an external locus of beauty and self-worth. It is excruciating because what you think of yourself might be one thing this minute, and something completely different the other. Uncertainty is perhaps the most difficult aspect of life as it is, and when that uncertainty extends to one’s sense of self, the confusion it might cause at a young age is unbearable. It tears one apart from the inside.
The shame of it all doesn’t even hit consciousness during the early years of one’s life. I was but a child. It is said children, perhaps instinctively, sense negativity and withdraw. While I got unbridled love from my parents and siblings, the looks and taunts of the world did affect me. I didn’t understand why, but it did.
When I first developed vitiligo as a child, my mother truly did try her best to ensure that I got whatever treatment was available at the time. In fact, I recall vaguely that one treatment I underwent in Mumbai involved burning of a tiny skin path. It hurt like a b*itch, but the hope that it might work perhaps made it all worth it. We tried all sorts of ointments, even homoeopathy.
Many times I would fixate on one such spot. I remember while bathing, every single day, I would obsess over whether that particular spot has increased or decreased in diameter. I would even try to compare the colour. I was told by some doctors that the spot might change its colour from bright white to a shade of pink and ultimately, to some shades of brown. That would be the marker of the treatment working.
But one just never knows whether the treatment is working or not. Especially in the advanced stages of the syndrome. For me at least, as soon as I would see one spot shrinking, another would appear. I was told to stop consuming a host of things including lemon, which I loved. I was asked to avoid the sun after the morning rays. I was asked to choose my skin products carefully. I was asked to not stress because stress aggravates the spots. I was asked to basically alter most things about my life and that too, most of the times, on a hunch.
Vitiligo is an autoimmune disease with no real ramifications other than the skin colour. Nobody really knows why it happens or so I am told. There is no guarantee of a cure. It was all just a big guessing game.
All of this happened while I just wanted to feel invisible. In school, while most people appreciated me for whatever I brought to the table including writing, debating etc, that look haunted me. The psychological effect of such skin-deep syndromes is such, that even if people weren’t giving me ‘the look’, it always felt like they were. It was nobody’s fault really. I was simply projecting my perception of self on to others. It was perhaps easier to blame others than face my own demons.
I remember an audition I participated in, once. I was auditioning to sing for some school fest and I was mighty excited. I had practised singing the song “Piya basanti re”, the absolutely mesmerising song by Sultan Khan and K.S.Chitra. As I hummed and tried to hit just the right note to start with, considering the taan was high octane and I didn’t have the stylings of Chitra, a fellow student walked up to me and called me a zebra. My confidence melted away and I suddenly got extremely conscious of my hands and legs. The short sleeves and the legs in that skirt. A strange urgency gripped. I wanted to disappear. When I held the mic, I forgot my taan, my voice shivered. All I could think of was my white spots showing as I held that mic. I wanted to get off that stage. Dash out. Run away. I couldn’t. I rushed through the song and missed some beats. The audition was ruined.
My teacher later came up to me and said.. “Beta.. thoda aur riyaz karo”. “Ji ma’am”. That was the end of it. I felt broken. I left the auditorium, joined my friends, cracked some joke about myself and laughed while every fibre of my being just wanted to go home and shut the door behind me.
When in college, after the initial bouts of shyness, I was by and large confident. I was intrinsically a rebel. And the rebellion just oozed out once I got out of the environment that forced me to look at the spots and not the leopard.
I did get up on that stage and sing again. I held the mic and the auditorium lit up with applause. But somewhere deep down, the scars were too real and the effect it left on my self-worth was not to be recovered so easily.
When one’s very self of being is damaged, one perhaps tries to overcompensate in various ways. When I look back, it seems like I did too. I was perceived as someone who doesn’t talk to many people because I was arrogant. The truth was, I put up walls around myself because that was the only defence mechanism I had. I assumed people would hurt me if I let my guard down, and when I did, my insecurity turned it into a self-fulfilling prophecy.
But I did make certain friends along the way who saw through that facade and loved me for who I really was. We had long singing sessions in the canteen, debated, wrote essays, went on bike rides and long walks. Friends who saw me and not my skin. Friends who understood what I stood for, what I believed in, what I was and not what I looked like. I left my inhibitions behind and lived those years on my own terms. I made my mistakes, fell down and picked myself up every single time. I sang to my heart’s content. I wrote till I couldn’t type anymore. I read till my eyes hurt. I walked and laughed and talked with my friends till I couldn’t even keep my eyes open. I skinned my heart and skinned my knees, quite literally.
While I lived on my own terms, the humiliation never really stopped even though I turned deaf and mute to it. I remember walking into a salon with my girlfriends. We were tired after some assignment and wanted a pedicure. The lady escorted me to my cubicle and readied the tub of warm water to wash my feet before the pedicure. After exchanging pleasantries, she looked at my feet and stopped cold. She hesitated. I wondered what happened because I had almost forgotten about the white spots. I felt humiliated all over again. My eyes welled up with tears and I started pulling my leg away. But she held on to my foot and gave it a slight tug. “Do you want French tips?”, she said smiling.
It was in that moment that I realised that a large part of the humiliation might just be in my head. I remembered what my family has always said, what my father has always said, “the world will see what you want them to see”.
I left that salon with gorgeous French tip feet and lots to think about. I shed my inhibitions and lived as I felt inside. A force waiting to be freed.
The shame didn’t completely wither away, though. There were still bouts of humiliation that I faced for years. Being called a zebra. A leopard. Diseased. Dirty.
Every time my now husband called me beautiful, I sneered. He didn’t understand then why I just couldn’t shut up and take a compliment gracefully. When we decided to get married, while meeting his parents, I ensured I wore full-sleeve blouses. ‘They would think I’m diseased”, I thought. “They wouldn’t like me if they saw me like this”, I thought. “They would tell him to find someone better”, I believed. I even started therapy again. It didn’t help. It made me dark. It made me tired.
My husband insisted that I need to let go of this fear. “I don’t give a f*ck about what anybody thinks. I love you”, he said. “You don’t understand, you never will”, I used to snap. “Hold those flowers up, I need to take a photograph”, he said. “Stop it! You know I hate getting clicked”, I used to say. “I don’t like my photographs”.
I didn’t like meeting my in-laws because it meant spending hours getting the damn makeup right.
A few years into our marriage, I stopped my treatment again. I realised that my husband, who I adore more than anything in the world really didn’t care. He saw me. Not my spots. But more than anything else, it gets tiring because you keep hoping it would work and then slowly, you just lose the will keep hoping.
Many people loved me for many things. My family, for reasons I will never fully understand, stood by me through my triumphs and insecurities. Unquestioning. Unwavering. Believing. In fact, unknowing. Families seldom even realise that their support means so much because it all just comes so naturally. “It is not a damn disease. To hell with the treatment. It’s just a skin thing. It affects the colour of your skin and nothing else”, my mother and father and sister and husband would tell me repeatedly when I decided to quit my treatment.
When I was expecting my child, any sort of treatment was ruled out in any case. Surprisingly, when my obsession with the treatment stopped, my obsession with the skin condition also stopped. I wrote extensively, I read extensively and I waited for my child to give me solid kicks through those 9 months.
Due to several health issues during the pregnancy, I needed platelets after my delivery. I remember holding my child for the first time and my husband clicking a picture. As I write this, I am trying to think extremely hard if even for a moment, I thought about my exposed white spots while he stood there with his camera pointed at me and my baby girl. I can’t. It didn’t matter. My in-laws came to visit me in the hospital. As I write this, I try to recall if I wanted to grab my makeup, lest they see my arms. I can’t. I didn’t. It didn’t matter.
I realise now, that it was never the vitiligo that bothered me, perhaps. What bothered me was dealing with an external locus of identity. What bothered me was looking for validation from people who didn’t matter rather than focusing on the ones who loved me at my worst and kept me humble at my best. What bothered me was a conditioned response: It is more important to look a certain way than be a certain way.
I still grapple with some issues. Like when I am invited to a seminar or a podcast, I get slightly conscious and try my best to avoid being on camera. But by and large, I realise that a majority of the people who like me do so because of what I am, what I write, what I believe in. What I look like is not even a concern. However, what is most heartening is that the people who dislike me also dislike me for the same reasons and not because of the way I look.
I accepted my white spots as an extension of myself. You know how we have ears, they are a part of us, but seldom do we actually feel its presence? Just like that. My spots don’t form a part of my conscious existence. I still get affected when someone calls me a zebra, of course, I am human. But I am free in my thought. I don’t let the world dictate my thoughts or my feelings. I never allowed the world to change me or mould me or co-opt me. I never took the easy road. I made my way in the world. I have the priceless luxury of writing what I want without the pressures that many might feel, compelling them to sell their pen. I hold my head high.
I write this today not because I am a victim. I never was. I never will be. I write this today not because vitiligo is a deadly or infectious disease that needs awareness. It is not. It is a superficial skin colour issue. I write this today because so many people live with shame. So many people shield themselves in cocoons. Protect themselves from the unkind words of the world. I write because I want them to know it is ok to feel what you do. It is ok to hide for a while if that makes you feel better. But ultimately, you must break the shackles. You must not let the world define who you are or what you think about yourself. It is ok to be you. Even with the spots.
I might be a zebra, but I am wild, untamable and free. At the end of the day, that’s all that really matters. As for my soul, it gets healed bit by bit every day every time my daughter smiles at me.
Note: This article is a personal experience to tell the world about the shame people with vitiligo go through for no fault of ours. While I personally decided to opt out of treatment, this is not to encourage anyone else to do the same. The only thing this article should encourage anyone to do is to be sensitive and not mock the ones with vitiligo.
And for the ones with vitiligo… you are beautiful. The world will see what you want them to see.
Editor, OpIndia.com since October 2017