I will always remember how awkward it used to be, how uncomfortable I felt introducing myself to new people. “Sheetal, that’s an unusual name,” they often said inquiringly. “My parents went through a hippie phase and gave me an Indian name,” I explained, before quickly switching topics of conversation.
They would never ask about it again. Why would they? There was no reason to doubt what I said. Yet it was completely untrue. Because although my skin was pale, I am actually Indian. My mother was born in Zanzibar and my father, originally from India, grew up in Mombasa.
But a condition called universal vitiligo had removed the brown pigment from my skin; something that had dominated my life for years and left me so lost and exhausted that I stopped correcting people if they thought I was white.
It was my sister, Tejal, who noticed the first patch of white skin behind my ear when I was seven years old. It didn’t hurt, itch, or discomfort; but over the years more spots appeared and spread over my arms, face and legs. Fortunately I was not bullied, but my parents were anxious and took me to the doctor. They identified it as vitiligo but had no idea what it meant or if it could be cured.
And their worries only increased when relatives and family friends would twitch when they saw me. “Is it leprosy or skin cancer?” they would ask. “You have to do something.” Soon my skin became a concern for everyone – even me. Then my parents heard about a clinic in India that had proven cases where they succeeded in reducing the white spots and bringing back the brown skin. A friend of the family had sent their daughter and it seemed to help her.
I was thrilled at the thought of being “cured”, so I loved going to India with my parents. There I was prescribed numerous treatments. From following a strict diet to putting oil on my white spots and sitting in the sun, I’ve tried everything. The worst part was that I had to scrape the dead skin cells off my body and then apply a paste. If you removed it, the skin underneath would burn. Mom or Dad fanned the area to cool it down, but the pain lasted for hours.
Of course, vitiligo has no cure, so none of the treatments worked no matter how many times we went back. By the time I was 17 I was tired, stopped taking the meds on time, even skipped them altogether. Dad noticed and asked what was wrong. I told him the truth. I couldn’t do this anymore.
I think it was a relief for all of us. By the age of 21, the vitiligo had spread to the point that I had lost all pigmentation in my skin. “It’s better, isn’t it, now that your plasters are gone?” people would smile. But it didn’t feel that way to me.
To the outside world I looked white. But I wasn’t. I felt lost, like my entire Indian culture no longer applied to me. At family gatherings, I felt like I was sticking out like a sore thumb. At Indian weddings, I heard people whisper how well the English woman dressed in Indian clothes.
Even when I met my husband Ketan, who knew about my condition, I remained self-conscious. When Mom tried to show him photos from when I was younger, I slammed the photo albums shut. When we got married and moved to Birmingham, everyone assumed I was white – and I decided to go along with it.
I got a job in banking, which often involved networking, meeting new people – and wearing a name badge. If someone questioned my name, I would either brush it off or lie. Even at that moment I knew it wasn’t the right way to handle it, but I couldn’t handle more people knowing about my changing skin color asking me questions, looking at me differently.
I was acutely aware of my skin color. About how Indian women looked at me when I walked by with Ketan, as if I had taken one of ‘their’. About how white bouncers would only let my Indian relatives into a club if they saw me with them.
When we had our two daughters, people at their school often thought I was the nanny. It was only after watching a documentary about vitiligo that it all came to a head. I realized that my experience with the condition had been so difficult because no one was talking about it – but I still wasn’t talking about it.
I mustered up my courage and showed my husband a picture of my teenage self, complete with patches of vitiligo. He was stunned when I told him how traumatized I still felt about it. Then I decided to post the same photo on social media, with a brief explanation of what I had experienced. The response has been great. “We didn’t know you were so upset,” friends from school texted me. For years I hid it so well.
From that point on, I slowly began to open up, joining several vitiligo charities — including the Vitiligo Society — and support groups, and posting several photos of me over the years on Facebook. I was impressed when I first saw Winnie Harlow. I wish I had trusted her.
But while I can’t change my past, I’m thankful that I finally know who I am. Vitiligo and my skin color have dominated so much of my life, but now I know my identity is much more than just superficial.