Swati

Swati, 42, Vitiligo

How would you explain Vitiligo?

I've had Vitiligo since I was 5 years old.  It started out as a little spot on my eye, and has spread slowly over time.  It's hard to explain to kids, although kids do ask me a lot of questions about it!  Vitiligo is an autoimmune condition that causes me to lose pigment (color) in parts of my skin over time.  So I am brown, but also have white spots on my skin all over my body.  

What would you want the world to know about Vitiligo?

Vitiligo can be hard to have at times because people often stare, and children can be mean when they point at me and ask me what's wrong with my face.  The children who are more thoughtful will ask questions and be kind about it and show their curiosity.  But all kids should know that just because someone looks different than you, it doesn't mean something is wrong, or bad.  It's just different.  It's important to accept other people's differences and what makes them unique.

What does it feel like to live with Vitiligo? 

In my body it feels like nothing is different.  I have a full, active life, a husband and two beautiful kids, close friends, a good career and home, and an active community and social life.  Sometimes I forget I have Vitiligo!  It's helped me to talk about it with friends, family, and a therapist to help me handle difficult situations when people approach me and are rude about how I look.  But over time I've learned to be proud of who I am, to be comfortable in my own skin, and not allow it to stop me from doing anything I love.  It's made me a memorable person, and people will approach me now on the street to say they remember meeting me years ago, or they regularly notice me in my neighborhood.  I'm a local celebrity :).  I'm very recognizable and I'm hard to forget!  

What brings you joy?

Spending time with my family, my friends, being in nature, going for long hikes in the woods, sitting at the ocean listening to the waves, traveling and exploring new countries, eating good food, living in a vibrant city, working on my creative projects, reading a book I can't put down, being a mentor, volunteering, and helping others.