Personal reflections as a “vitiligal”, from the CEO of Vitiligo Kids

Founder and CEO of Vitiligo Kids, Dhyana Abeysinghe, has lived with vitiligo since she was eight years old. Today, she shares her unique story with us.

By, Dhyana Abeysinghe, Founder and CEO – Vitiligo Kids

As we celebrate World Vitiligo Day on June 25th, I would like to share with you some reflections about my personal journey as a “Vitiligal”.

I can’t blame people for not knowing. Sometimes, I wish vitiligo was something that was universally known and accepted and something that people cared enough to learn and understand.  Ignorance is bliss, I guessIn my experience, ignorance is what leads to the gawking and snickering that make me want to hide who I am and cover my skin. There was a time in my life when I let other people’s thoughts and behaviours towards my vitiligo define me.  It’s hard to let go of it, and not see it as part of my identity or who I am as a person. As I have gotten older, I have made the realisation that vitiligo does not define who or what I am.  Yes, it is very much a part of me, but there is so much more and it does not make me any less or more of a person than anyone else.

People often ask me what the worst thing that someone has said to me (because of my vitiligo).  There are many examples, but one stands out in particular.  I am a competitive swimmer. One day at practice, one of my teammates said to me, “no offense, but when you first came, I thought there was a cow in the water.”   I was dumbstruck and frozen, not just by the brazenness of this horrible comment, but more so that it was from one of my teammates, who I thought was my friend.  I forced a smile to shrug it off and hid in the changing room crying into my towel.  I have learned that when you encounter unpleasant experiences such as this, it is best to not take it to heart and get you down.  These comments come from ignorance and sometimes malice and it is their insecurities and flaws that lead them to be so insensitive and unkind.

The other aspect I have to deal with is curiosity coupled with ignorance.  I sometimes find that people are curious about my condition, but afraid to ask for fear of making me uncomfortable.  For me, if anyone is curious and wants to learn and understand what my skin condition is, I would jump at any opportunity to educate them. It’s also important to be respectful when doing this, and a lot of the questions I get asked are not always asked in the most respectful way. The motto that I think we all should live by is this, it’s okay to not be educated about something, but it is never okay to be rude and disrespectful. Asking me, “can you tell me more about your skin?” is fine.  Gawking, snickering and talking behind my back, not OK.  This applies to anything, and I think that this captures the essence of what it means to truly be an individual living in today’s diverse society. We should celebrate uniqueness and different ways of life. Everyone is valid. Always.

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