A man asked me about my vitiligo

an acquired depigmentation disorder

vitiligo-1I got vitiligo about 15 years ago, as I first talked about here, then here and here and most recently, here.

It is “an acquired depigmentation disorder, manifests as white macules on the skin and can cause significant psychological stress and stigmatization… [and] affects about 1% of people worldwide.”

What prompted my revisiting the topic was that a gentleman asked me about it a couple of months ago while we were waiting in a bus stop. He said, “Excuse me, but do you have that skin thing?” “Vitiligo.” “Yeah, that’s it.” This happens two or three times a year, conversations with people I did not know. It doesn’t bother me.

He was a black man, roughly my age, discussing his son who is in his thirties. He said that it really messed up his son’s head. And, as one sometimes does with a total stranger, I acknowledged that it did a number on me for a while.

Specifically, I’m still not all that great with looking at photographs of me from five or ten years ago. I was so cautious about staying out of the sun, that whatever melanin I had in my face seemed to have gone away altogether.

I look specifically at group shots which included me, and I cannot identify myself except that, well, that’s where I usually stand. In a black-and-white photo in my church newsletter from probably a half dozen years ago, there’s a guy wearing African garb, talking with his hands in the Rose Room of my church. I recognize the clothes but not the fellow wearing them.

Pretty much as a direct result of that specific photo, I became somewhat more bold in getting sunlight. I still avoid long exposure and use sunscreen. OK, I’m not as good with that in days that are cold and overcast as I should be.

So I related heavily to this man’s son’s trauma. In my experience, while white folks also vitiligo, black folks seem more weirded out. In retrospect, it messed with my psyche far more than I admitted, even to myself, at the time. It was OK for me to look older and grayer and heavier, but this was different. I probably should have seen a shrink.

I have this thrill seeing models in Glamour magazine with vitiligo. In some TV ad, the first image was a young woman with the condition and, implicitly, she was seen as beautiful. In ways you root for people that are on “our team”, this made me happier than I could have imagined.

For ABC Wednesday

Author: Roger

I'm a librarian. i hear music, even when it's not being played. I used to work at a comic book store, and it still informs my life. I won once on JEOPARDY! - ditto.

8 thoughts on “A man asked me about my vitiligo”

  1. I agree with all of what you wrote and can support you in any way you can think of…adjusting to lupus has been like that, too, in my own experience…having pictures where you don’t recognize yourself…

  2. I can see where it’s a lot tougher for black or brown people to live with this condition. My mother has her head all covered in discoloration, but her doctor did not say anything about vitiligo. I think she’s left undiagnosed. It’s only her head and nowhere else on her body though.

    My ABC WEDNESDAY

  3. My vitiligo is only noticeable in the summer when I can’t avoid the sun enough to prevent tanning a little. The sun feels painful to me especially in my hands, which have completely lost any melanin they had and even a little sun exposure stings. I hate it but it seems a very small thing compared to not recognizing oneself in photos.

  4. Thanks for continuing to speak your truth. So proud of you. So sorry you have to deal with this, but proud of how you “turn lemons into lemonade”.
    You are still very handsome and I love you. ❤️

  5. This the other side, in my teen years I had a class mate Rose, whose one half of her face was covered with a wine spot – can’t remember the name for it but it was exactly that color : wine red. Already then I had psychological inclinations and asked her how she felt about it. She said that her parents helped her to accept it. She was a happy go lucky girl – and witty, and that is how I remember her!
    Your comment on my “vacation” – Roger! You never told me – we could have met up when living in the Southern Ca;!

  6. In reality it is a sad but actual thing that people Judge another by his appeareance, but we all do it in one way or another, even though we don’t want to… we do it without realising it… Illnesses of any kind are far from ‘fine’ to have… I wish we could come up with something, as mankind, to makes us stop judging another person by his appearance, especially when that appearance is caused by some ‘mishap’.

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