How do you answer people when they ask you about your vitiligo?

I like to be as upfront as possible. The other day my buddies girlfriend asked me what was wrong with my hands. She thought I had been painting recently. She was curious. So I told her I have vitiligo, the autoimmune disease. She has arthritis so she knows what autoimmune means and we moved on to another topic.

This is just a recent example of something that happens on a regular basis with me. My experience is that the only people that ask about the lack of pigment on my skin are the people that care. There is sometimes a note of confusion or concern in their voice, sometimes an awkwardness. But never has anyone asked about what is wrong with my skin unless the were genuinely interested in my well being. I appreciate the concern and while I don’t always appreciate having to explain that I have a disfiguring disease that will only get worse, I do like that people feel comfortable enough to voice their questions and concerns and I really like getting the disease out in the open.

I think this is different for adults. Kids can be mean. Some people commenting on the blog talk about how hard it is to make friends with highly visible vitiligo. This can be particularly hard for people with darker skin tones where the contrast is stark.

What can you do? It is possible to define yourself as something other than the person with the skin disease. Even for me, with this blog and my friends knowing about my disease, it’s not something that gets much discussion. Generally I don’t talk about it, or think about the fact that I have vitiligo. I find that the more attention and head space I give to my vitiligo the more than it brings me down. The more I focus on the things that matter the less attention it gets. If I focus on my work, my friends, on food, on fun, vitiligo becomes far less important. It really does not have to effect me. It does sometimes and yet I have a measure of control over whether or not I allow the fact that I have a disease to be significant. I am able to exercise control over my perspective and so I can also exercise control over other peoples perspective. This is a strength we all have. We live in worlds of meaning we create together. Just because I have vitiligo doesn’t mean my world is coming to an end.