I want to speak about something that I wasn’t so vocal about until very recently, growing up with vitiligo. Growing up in the Bangladeshi community, I’ve always been afraid of how I would be perceived because of my vitiligo. I think the whole “what would people think” mentality got to me. Growing up, I remember being so afraid of how I was perceived. I recall, in the 5th grade, my dad shaved my head and I had two patches of vitiligo on my head, so I wore my hoodie in class. The teacher told me to take off my hoodie multiple times and I didn’t, and she finally yelled at me and I took it off and was very embarrassed. When she saw the patches, I know she felt bad for yelling at me and understood why I didn’t want to take it off in the first place.
Growing Up with Vitiligo
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Fast forward a few years into high school and I remember riding the bus and having my hood on all the time because some of my hair was grey due to the vitiligo. It would be 90 degrees and I would be sweating underneath my hoodie, but I didn’t want to be perceived as odd, so I’d suffer through the heat and keep my hoodie on.
My actions weren’t attributed to just my paranoia though, there was substance to it. Growing up, I’d always hear aunties and uncles say some terrible things to my mom about my vitiligo. Everyone always seemed to be worried about why my parents are not seemingly trying hard enough to treat it, or if they ever thought about how they’d get me married, or who would even marry me. I heard some utterly ridiculous things and although, over the years I was able to play them off, some stuck with me. I remember one specific incident where an uncle stopped an 18 year old me on the way to the store to buy milk to ask me if I was getting treatment. I replied that I was but there was no permanent solution to it at the moment. His reply still baffles me to this day as he went on to tell me that I have to get it treated because I would eventually have to get married one day, and that no one in their right mind would marry me because of my vitiligo.
Fast forward to summer of 2017 and I was really struggling with coming to terms with myself, namely, my vitiligo. Sometimes, I’d question, why me, what did I ever do? Needless to say, I was starting to really beat myself up, and it could not be more timely, that my boss told me that his son had a very minor case of vitiligo and he started a treatment called excimer laser therapy. He recommended to me an office that administers the treatment and suggested I check it out. He even told me that if I needed to leave early or come in late to accommodate my appointments, he understands and is ok with it. This was one of the biggest turning points in my life for me, I found something that was working. It’s not a permanent solution, but it’s a solution, something that was yielding results like no other treatment before. I started to get my confidence back and it brought me a sense of happiness I hadn’t felt in ages.
More importantly, I saw this whole ordeal as an opportunity to use my voice to do something for a greater cause. Around last Thanksgiving, my doctor asked me to be part of a video where he uses my success story as a way to inform others about the treatment. I took the opportunity and I collaborated with him. He dropped the video on Thanksgiving day, which was very appropriate to say the least, I am very thankful for the last year and a half, it really molded me into a version of myself that I am content with.
Around the same time, a young man, no older than 15, from my local masjid approached me. He started seeing patches of vitiligo a few months prior and he told me “I just don’t want people to look at me weirdly.” I really felt the sadness in his statement, and I tried my best to reassure him and let him know that I understood where he was coming from. I’ve learned that I have a voice and I can either be angry at the people who brought me down, knowingly and unknowingly, or I can use my voice to try and uplift those who are going through the same journey that I have gone through and am going through.
All that being said, I do think people should always mind their words. All the things I grew up hearing probably didn’t affect me right away, but, at one point, they did. Words leave lasting effects and no one ever loses out with the exchange of kind words. I think especially in the Bangladeshi community, I’ve always received comments that didn’t sit well with me, and as much as I love my community, I would have appreciated more love and care from them when addressing such a touching matter. Words matter, and I’m just another person trying to use my words to comfort the people around me.