My skin has patches of white and brown. I have vitiligo, a condition in which my immune system attacks my skin’s pigment, causing my skin to turn white. Michael Jackson had this condition and so does the famous model, Winnie Harlow, who appeared on America’s Next Top Model in 2014. I never learned to accept or express my skin, body, and self as something beautiful instead of shameful until I was in college.
The first patch started by my left eye when I was five years old. It emerged as a tiny white dot, smaller than a pearl. Then the spot grew bigger. That was when my parents took me to a dermatologist. The diagnosis was immediate. Vi-tuh-lie-go, each “i” pronounced differently. “There’s nothing we can do,” the doctor said. “She will have to live with it. The white will keep spreading, but she can wear makeup when she’s older to cover it up.”
My parents are immigrants from India, where vitiligo is stigmatized. It is extremely difficult for women with vitiligo to get married in India, because vitiligo is associated wrongly with a form of leprosy that causes white patches on the skin.
“We cried ourselves to sleep every night,” my mom told me. Their only daughter couldn’t be that, a shaythee — the Bengali word used to refer to someone with vitiligo – an outcast. They believed I would face the same kind of discrimination in America.
The doctor visits continued for a long time. My parents were desperate to find a single doctor who could stand in their shoes and understand how easily one person and their family could crumble under the weight of shaythee.
They found a few doctors who seemed to genuinely care and want to help, or so my parents believed, until the pills, herbs, and lotions they paid for without second thought didn’t do a damn thing. Those doctors were fraudulent, getting rich off the fears of people like my parents.
Desperate, my family turned to Hindu astrology. Hindu astrology functions on the premise that the planets are aligned at the moment of birth to reflect a person’s previous life karma. When you read someone’s horoscope, you can supposedly track the consequences of past life karma and predict every aspect of a person’s life and personality. Through this mentality, I was raised to believe that my skin condition, as well as internal health problems, had resulted from my actions in previous lives. My parents blamed me when my vitiligo and health conditions worsened because apparently my lack of faith made me prone to karmic justice. I must have been a ‘bad girl’ in a former life.
My family’s astrologer was more comforting than the doctor. “It isn’t shaythee,” he said. “Whatever she has is caused by her liver. Her skin will regain its pigment completely.” Having given my family hope that my condition would naturally reverse itself and that my curse wouldn’t last forever, he said, “You should use alternative medicine to help cure her liver and skin.”
So my parents stopped taking me to conventional doctors altogether and started relying primarily on homeopathy and Ayurveda, a form of Indian herbal medicine, in addition to stones that apparently reflected the light of the planets. My family found every place to stick the stones – on my fingers as rings, tied on a string around a bicep, around my neck as a necklace, and tied on a string around my waist. These three methods became the primary ways of attempting to reverse my vitiligo as well as treating a multitude of other chronic health conditions I had – all lumped together as “my nameless liver condition.”
I wouldn’t see allopathic doctors about my chronic health problems until I was nineteen years old, in college and away from my family. Until then, I would live with undiagnosed and mistreated conditions. In addition to my vitiligo, I had an autoimmune thyroid condition, a heart condition, various reproductive issues resulting from Polycystic Ovarian Syndrome, depression, and anxiety – all of which affected and still continue to impact my daily functioning and energy levels.
Throughout my childhood and teenage years, I never spoke about my skin, health problems, or my family’s use of astrology and alternative medicine. I didn’t have words to describe what was happening. My family wasn’t okay with me discussing it because they believed people would look at me differently if they knew about my health problems in addition to my skin condition. I spent my most formative years in an atmosphere of shame, surrounded by the need to be hidden, because of the stigma and because of my family.
When I came to college, I was required to take a course on women’s leadership. In the class, we discussed how immense social change can occur when people have the courage to speak about their personal struggles. Audre Lorde’s essay “The Transformation of Silence into Language and Action” broke through the walls I had constructed. “What are the words you do not yet have?” she implored. “What do you need to say? What are the tyrannies you swallow day by day and attempt to make your own until you will sicken and die of them, still in silence?”
These were the words I needed to say: That my body was not my own. That it was subordinated to forces beyond my control. That I lived in fear of my family’s expectations as they scrutinized my body on almost a daily basis and blamed me if my skin wasn’t regaining its pigment. That this was my family’s abusive way of protecting me because they were afraid of social and cultural stigmas.
But I didn’t want to hide and submit anymore. My body was a piano and I had placed it at the mercy of everyone to stamp out the keys in cacophony. I needed to reclaim my body and voice and see my whole self as a work of art, rather than a freak of nature that required fixing, repairing, and changing.
Fast forward four years, I am now writing a novel based on my experiences. I do not wear make-up to hide the light and dark patches of my skin, and the novel centers on an Indian-American girl with vitiligo.
Throughout the past four years prior to starting my novel, I have slowly constructed myself as a work of art. Art is beauty created simultaneously through intention and acceptance. Art is about moving from chaos to meaning. When I started voicing my experiences little by little in my personal relationships, creative writing, and academics, I chose to take control of the chaos I had been dealt. In my poetry about the light and dark parts of my skin, of its surface and depth, I intentionally chose to accept my flaws, imperfections, and quirks and make meaning of them.
My meaning was to use my experiences and voice to help others so no one would have to suffer through this alone ever again. And when I created this meaning, I began to discover beauty within myself, both external and internal.
Even though I could suddenly grasp this beauty, I couldn’t expect my family to immediately see it. To give myself the space to create this meaning, I cut off from my family for an extended period of time and worked towards financial independence. After I was in touch with my family again, I set strict boundaries by not allowing certain topics to be discussed – namely my skin, appearance, health conditions, and astrology. This is the only way I knew how to protect myself and to keep discovering my personal meaning. However, I feel they have come to accept my vitiligo the more I have poured this meaning into my body.
With each word I write and speak, I come to accept my body and the ways it has shaped who I am. The more open and honest I am about where I have been, the more connection I am capable of igniting with people who might feel as isolated as I did in the past. In this connection, I find greater intention, meaning, and beauty than I ever have in my entire life, and I hope others see this intention, meaning, and love through their interactions with me.
My body existed in such a plane that neither of the cultures I identified with truly accepted me, and both the conventional and alternative medical systems failed me. I know I am not the only one who has gone through similar experiences. Unless I have the guts to stand up and say this happened to me, others will continue to suffer in silence and neglect to see the beauty in their difference. When I write, I give my body, mind, heart, and soul a voice, and I connect my voice to millions of others who are struggling. In my voice, there is no longer cacophony, but a soaring symphony that has the potential to change lives in more ways than I am aware.
