My life with this skin condition
Living with Vitiligo is life changing
October 7, 2022
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By Mark Braxton, as Kendall Morgan was told
In 1996 I discovered a small white spot on my thumb. It itched. I thought it was a scab or something. I haven’t thought about it too much. Then I noticed other small white spots. They spread.
The first dermatologist I went to looked at me and walked right out of the room. He came back with a brochure and said, “You have it: vitiligo.” There wasn’t much information at the time. The doctor gave me a topical cream for this. I’ve been trying for 6 months. It didn’t seem to help me, so I stopped. I felt drained.
Luckily it was a different experience when I went to another dermatologist. He shook my hand. He knew right away that I wanted to know about the spots. He explained to me that I have vitiligo, a skin disease. It is not contagious, which is important to people. There is no cure or way to stop skin color loss. He told me it might spread or maybe some of the pigment would come back. Then he asked me a question I wasn’t expecting: “How’s your self-esteem?”
I felt good then. It was just a few small stains. Over the years as it spread and I could see changes, I began to feel more insecure. I now have it in patches around my mouth and all over my body. I stopped wearing shorts. I stopped going to the beach and pool. I would avoid social situations where people might look at me. It was insecurity and sometimes mild depression and anxiety.
The mental aspect is probably the biggest challenge I’ve faced. Vitiligo has changed the way I think about myself. I didn’t see myself the way others saw me. I struggled socially with friendships and relationships. One of the worst things I’ve found people can say is that it doesn’t bother them. I understand you might say you don’t mind, but until you’re in my shoes, you don’t understand. You don’t have to look in the mirror and see how your body or skin changes over time. There’s that fear of the unknown.
I did not seek treatment even though it was offered. The creams I tried first didn’t seem to help. Light therapy is an option, but it’s time consuming and I didn’t want to risk burns. I thought I could do it all on my own. In 2019 I realized that I had failed. Something a child said helped me change my perspective. I was working at a camp and this little girl told me I was a butterfly. She identified my spots as a butterfly, as something beautiful.
I decided it was time to open up. I joined the North Carolina Vitiligo Support Community after years of avoiding them. It was the best decision I’ve ever made. My vitiligo has been something I’ve never talked about for so long. My family and friends didn’t know how I felt about it. I started sharing my journey with other people and it helped so much.
I am now one of two leaders of the North Carolina Vitiligo Support Community in Raleigh. I’m also on the board of VITFriends, a national organization that promotes peer-to-peer relationships in the vitiligo community. I host a podcast called Living Life and Love where others with Vitiligo can share their journey. I found that sharing my own journey with such a large audience freed me from a personal prison that I had lived in for too long.
This skin condition has opened my eyes in so many ways. I’ve come to a place of acceptance. I have learned to live with Vitiligo and to love myself. Some days are still tough when someone whispers or stares too hard. Children are often curious, and that’s okay. I’m trying to educate people about what vitiligo is.
My skin is finally looking different, but I still have interests, hobbies and talents. I like to write poetry and short stories. I like to paint, draw and be creative. I’m a big fan of science fiction and superheroes. We all have a lot more in common than we don’t. I’ve gone from insecure to confident. I often say it’s a process for all of us in the vitiligo community. Every trip is different. Everyone has a story to tell.
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