Living with vitiligo: My search for identity

My skin had only lost some of its pigment, but society made me feel as if I had lost everything


By Yusra Jamal

KARACHI: My name is Yusra Jamal and as you might have guessed, I have vitiligo. Yes, that’s my introduction because who cares about anything else, right? Who cares about what I have studied or what my aspirations are? Who cares about what my hobbies are or what I dream to be? Who cares about how I pick myself up each time people make me feel worthless? This World Vitiligo Day, I want to talk about how a patch on my skin seems to be my identity. How my skin only lost some of its pigment but society made me feel as if I had lost everything.

 

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I wasn’t born with it. The white patches on my face, as some people like to call it. My skin only began to lose pigment when I was seven or eight years old. I am the only daughter of my parents who got blessed with a child after years of waiting and praying. They did not even know what was happening to me. They took me to all sorts of health professionals. Doctors, homeopaths, hakims. Some told them it was nazar (evil eye) for why else would a cute little baby girl grow up to be an individual with vitiligo?

world vitiligo day

I don’t remember seeing myself without it, but I also don’t remember being treated differently. My immediate and extended family never made me feel as if I was out of place, as if I looked different than the rest of them. They never let the marks on my face dictate the kind of human I would grow up to be. So I grew up loving myself – like all kids do. Until outsiders decided that individuals with vitiligo don’t deserve the same place in society as people without it.

wolrd vitiligo day

I was not ‘normal’ perhaps and people made sure they reminded me of it every chance they got. “We’re only doing it out of love”, is what most of them would say as they commented on my face. Bus stands, public bathrooms, malls, grocery stores. I received unsolicited advice wherever I went. So I scratched at my face as I stood in front of the mirror, trying to get rid of the marks on my face. I was only doing it out of love, I told myself.

I underwent all sorts of medical and natural treatments “out of love” for society. I still do it out of love for my parents. My parents, who don’t even know half the things I have had to listen to. My parents, who always taught me to wear my scars as a blessing from God, and loved me just as much as any parent loves their child.

Society, on the other hand, tries every single day to bring me down. Of course, my face does not meet society’s unrealistic standards of beauty. Ironically, our gora complex takes a backseat when it comes to the white marks on my face. I am now 27 years old which means that I am way over the ‘right age’ for marriage. Given our toxic rishta culture, the process of finding a partner for myself has only been made harder for me.

Day after day, random women come into my house entitled to scrutinize me from head to toe, only to find out that I have vitiligo, and leave. I have been made to welcome aunties who would not even look at me for more than 30 seconds before making up their minds. The best ones are those who shamelessly ask my parents if they have another daughter they could consider. At this point, the whole process is nothing more than a circus for me. It’s a race towards ‘how fast can you leave’ with my respect for people winning each time.

The worst feeling, however, is being let down by people who promised to be my rock. The people who ensured that physical appearance does not matter to them. The people who would rather let go of love than their mother’s insecurities. “Hum loagon ko kya jawab dengay?” is what I got to hear instead of an apology.

world vitiligo day

Here is my answer. The loss is not mine for I am grateful to God for all that He has given me. I am a confident, well-educated, strong-headed girl who knows what she wants from life and people’s opinions are definitely not on the list. Yes, I have vitiligo but I also have a family that loves me endlessly, I have a career that brings me immense joy, I have a home to return to after every bad day. Yes, some days I feel like giving up, I question my ability to find love in this world, I wish I had not spent the time and money trying to ‘fix’ myself that I have. But every day, I know who I am.

Seven-year-old me might not have known what World Vitiligo Day is but 20 years later, I know that it is my day. It is the day I tell everyone that vitiligo is only a part of me, perhaps the part of me that has taught me the most. Courage, strength, empathy, acceptance, love. Vitiligo has made me kinder, especially towards myself. It has filtered out people from my life who I definitely did not want to be around. It has shown me that true love looks way past physical appearances.

People might have made me feel lesser ‘out of love’ but if there is one thing that I want to do out of love, it is to accept myself just the way I am.

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