So I graduated high school this month (Amen for that). I was diagnosed with Vit and Hashimoto's Thyroid the day of my Senior Prom and the Vitiligo has been progressing ever since. I have two large patches around my eyes, my top set of eyelashes are now almost completely white.
Since it came on so quickly, I've had a lot of problems communicating what it is with people. I always seem to give them the long-winded scientific answer when that is probably not what they are looking for, the worst is with children who don't understand it well. Any tips?
I also wanted to get things off my chest that I have never said before - primarily what others have said about me. I was picked on a lot in my last few months of high school and my grade dropped drastically. I've had people come up to me and ask:
"Hey Vaughn, going to change any more colors this week?"
and
"Go on cry, we want to see if your tears are white too."
Coming from what should be adults, these comments were extremely hurtful. I needed to write about them to vent a little, it can be very unhealthy holding that in. Has anyone else shared these experiences?
Replies
With kids I recommend telling them its because you didnt eat your vegtables :)
Hope my advice helps. Kids can be VERY rude but they dont know any better.
Unfortunately, adults aren't always more aware. I'm so sorry that happened to you. As you get older you realize that adults don't know what they're doing either. We have some life lessons, but we are trying to figure out how to navigate through life like everyone else. Character and actions become more relevant than age. It's true at your age too...most of us just didn't figure it out until we were older :)
I told the kids I babysit when one of them noticed my hand and asked about it. I told them "You know how your body protects you from colds and stuff? It tries to make you feel better by fighting the cold. My body gets confused and it thinks that the color in my skin is like a cold and it tries to protect me from it. Isn't that silly? It gets confused and it changes the color of my skin. I'm not sick. I am healthy and fine, but you may notice my skin changing color. It's no big deal. You have brown skin. Your mom has black skin and your dad has white skin. It's just the color." They smiled and said "Ya!" I also told them, "Now if you meet any kids who have it, you can say, 'Hey, I know someone who has that! ' and be their friend! " Then I told their mom about the conversation so she could field any follow up questions. I told her and she knew of Michael Jackson so that helped. I usually just say it's an autoimmune disease that causes me to lose the color in my skin. For teenagers, I might joke and say "You can breathe the same air as me. We're cool. Michael Jackson had it and he turned white. I'm turning white too. Good news is that I get his dance skills too. " That way it's not too heavy. People don't know how to react. If you make it no big deal, they think it's no big deal. I would confide in close friends though. Let them know how you're really doing with it from time to time. That's what they're there for!
Good luck, love and thank you for reaching out!
Just tell the idiots it's the disease that made Michael Jackson white. When they're that mean and rude to your face, there's no point in trying to educate them further. I recently had someone tell me that her mom has Vitiligo, but that's okay as she's white it doesn't show on her. Considering it was a coworker, I couldn't give the response I wanted to, which would have involved a number of choice words. She's bi-racial though and quite the know-it-all, so I found it surprising that she's assumed she doesn't have it just because she hasn't lost any pigment yet. I hope she isn't proved wrong, but it wouldn't surprise me if she develops it at some point in her life.
As for kids, they're easy. Just tell them they're special spots that only certain people are allowed to have. That's what I used to tell my younger cousins, and of course as they get older they understand more, but with a kid there really isn't a reason to go further into it, unless they have it.
The hurtful comment thing? That will never go away. Neither will the stares. I could lie to you and tell you it will get better in college, or that eventually people will understand. The truth is as time goes on you'll figure out how to cope with the comments or stares, and you'll find your group of friends that accept you for who you are. In the meantime, find a new hobby that you love to do and stick with it. Mine was baking. When things were unbearable, I'd go make a tart, or a pie, or three dozen cookies. It worked for me. Of course, now I'm overweight, which is a different issue, but it helps me relax and center myself. And it got me through some really rough years to get to a point where I now have a close circle of friends, none of whom have Vitiligo, who accept me for who I am. You'll get there, it just takes some time. Which stinks to hear, but hopefully it won't be long for you. Hang in there!
people can be so cruel. I think you are awesome.
Hey Vaughn !!!! Good that you shared your experiences - good or bad !!! For adults who do not know about Vitiligo - better to tell them that your immune system is destroying the melanin (which gives your body color). For a child - you can just say that your skin is loosing its color - and you don't know why! For anyone who makes rude comments - just tell them to GROW UP! Or you can say - "what goes around comes around" - if they are intelligent enough to understand what it means! But don't show that their comments bothered you. Be prepared! You will be fine!
Nobody has ever said anything bad to me about my vitiligo! It is there to see on my face and fingers! Of course, they stare! Can't blame them for that! Humans are curious in nature!
On a side note - I highly recommend that you try Protopic / Tacrolimus Ointment for your vit on the face. If you read past discussions you will see how it has helped many - including me! Take care!
Again, thank you for being so open & sharing. Rock on with your awesome white eyelashes!