Society’s Negative Portrayal Of Vitiligo Is Harmful

While previously we learnt about vitiligo itself, today one of our followers, Mariam Asif, is writing about her experience growing up in this society with it. She received several negative comments and opinions regarding it that affected not only her self esteem, but also her dietary habits. Scroll down to read all about it:

The statement “Log Kiya Kahingaye” (what will people say) pretty much sums up how our society works. The social norms backing this statement are the reason why people today, especially women, have fallen prey to the beauty standards set by society. “Larki gori honi chahiye” (a girl should be fair), she should have “lambay baal ” (long hair),  be “flexible” and “pali ho ” (thin) – these are just a few of the toxic log kiya kahingaye standards that prevail and dictate our lives. Beauty is now judged primarily on the bases of looks, which shows that the value for an individual’s inner self seems to play no role in making them unique in society. 

The statement Log Kiya Kahingaye dictated my life once also. At the age of 8, I developed vitiligo – an autoimmune dysfunction where your immune system starts to target the melanin because it mistakes it as a foreign organism. Melanin is the brown pigment in our skin and when your system starts to fight the melanin, you lose it in certain areas. This turns those areas white or less pigmented. It started to grow and by the time I was 12, I had it on my forehead, eyes, thumb, foot, elbow and knee. I have come a long way and now it’s just on my eyes.  I didn’t fit in the beauty standard society had set; in fact, having Vitiligo was considered worse that being dark skinned.

Having vitiligo meant there were always questions. Some people asked me if it was contagious (it isn’t), some asked me if I ate milk and fish together (this is a myth) and a few told me (a 12 year old) that ‘yeh Allah ka aazab hota hai’ (it was a curse from God’ and that ‘jadu kiya hai’ (an act of black magic). I’d go swimming and aunties would tell me not to swim because if my skin got darker, my spots would become more visible and I shouldn’t be careless about them. Like every other kid, I didn’t care for beauty standards. All I cared about was going to the park, watching shows and having fun. Until all the desi aunties started commenting on my looks. 

When I was 13, someone told my Dadi that I should use makeup to cover my vitiligo because it’s becoming too visible and that I wouldn’t get married if I went around flaunting it. Every time I’d go to dinners, parties,  or even the park which was my happy place, people would pity me. They’d ask my parents a 100 questions and always advise them to make me cover it because ‘aisay larki sey kon shaadi karay ga.’  When I started covering it, it did feel like a blessing; it meant less questions, less remarks and less involvement from others. 

One day I was at a friend’s house watching the season of America’s Next Top Model that had Winnie Harlow, a model with Vitiligo. I remember my friends’ sister saying “Oh God she looks so disgusting! Why is she even on this show?” Due to my makeup, she didn’t know I had it, but I felt crushed and disgusted that day. I got obsessed with the thought of getting rid of it and in the process tried numerous treatments, from herbal to topical, and I even went to Dubai and Germany to get  consultation. My family did everything to try and help me. I drank disgusting herbal water for 6 years of my life; it messed up my digestive system and created other health problems, but it didn’t matter because I was taught beauty is pain. 

In 2016 when I shifted from Karachi to Lahore, due to a logistical reason, my medication didn’t reach Lahore and I stopped using it. Slowly, I started eating all of the things I was prohibited and started living like a normal human. When I initially introduced those foods back, I’d get sick because my body was not used to them. In the process of trying to treat my vitiligo, I had developed an eating disorder. And to my surprise when I actually did start eating properly, my vitiligo did not increase, in fact it started to decrease. I was using no medication or cutting anything out of my diet – I was just happier and less stressed because I was in a new city with less people commenting on my skin. 

Within the last 6 years, my vitiligo has decreased and become stable. Yes, I still wear makeup, but I’m not as hesitant to go out without it as I used to be. However, I still do not have the courage to go to parties, weddings and gatherings without a layer of makeup, but I hope that one day I can. The people who actually know me however, know that I have vitiligo.

I was too young to understand before, but I know now that I shouldn’t let people dictate my life. Instead, I focus on building my personality now because that’s what I believe is real beauty. Our society often gives inner beauty such little importance and ironically, that is what is actually ugly. Body shaming isn’t seen as offensive and is justified by statements like “tumhari behtari kay liya bol rahay hain” (it’s for your betterment). These often unrealistic beauty standards don’t just spread negativity, but also hinder one’s personal growth. We need to stop killing our personality because of them and instead, as a society accept that we are all diverse and that’s what makes us beautiful.

When I look in the mirror now, I don’t feel ugly. Instead I just feel different, but that’s okay. It means I am unique.