I have to admit that I have been living with increasing vitiligo for the last 18 years, and although I have accepted my condition steadily over that time, I still find myself self-conscious in the most mundane moments.
Take the other day for example: I was on the metro, on my way to work when I could have sworn the guy sitting across from me was staring at my hands. Lock-eyed. I was positive of this, so I started trying to hide them. Now, it's important to state that although I USED to have olive coloured skin, over the last 5-6 years or so, I've been going out less and less in the sun and my skin has been getting paler and paler (not counting my actual spots) so my spots are less visible. Barely anyone notices my spots anymore.
But in my skewed mind, they're highlighted bright pink and the first thing anyone will ever see.
Why is it sometimes I completely forget about my vitiligo and other days I feel like they are the pimple of the tip of my nose? Why do I get nervous about the next band video or photoshoot, about how the makeup artist is going to have a stroke when he/she realizes the product and time necessary to give me that perfect, smooth, hi-def complexion?
I know I'm not the only one who feels like this and sometimes I catch myself being thankful and other times swearing the skin I'm in...
How do you live it? In the purest, most honest way, how does your vitiligo affect who you have become without hiding behind the wisdom. I'd love to hear the bear truth behind other vitties' personal views on vitiligo and their experiences with it.
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I have had Vitiligo for about 17 years, I just live life like anyone would really, i don't let anything stop me, and i act like there's nothing wrong, that's how my family always treated me, it's never even been discussed actually. a good and bad thing i suppose, good because i forget i have it until i feel someone burning a whole in the side of my head, and when i look up, there someone is, staring, zooming in, now i understand ok, wow that's something different, and i would be lying if i said i did'nt stare sometimes at people with "physical deformities" it's not of the norm... but some people are just so rude about it, like they are better then you, that's the stuff that bothers me, I'm always like "don't stare, that's rude, ask me" and i will school all i can sometimes not being able to shut up, but i feel i'm spreading the message, and if that's one less person that will stare so rudely the next time at another fellow vitiligan, then my job is done :0) I especially love telling little kids about it, cause they are just so honest and open and they are like a sponge... Basically when someone stares... I stare back, but with the biggest brightest smile you could ever imagine, lol, they either smile back or become ashamed, or just keep staring, so then i kindly "display" myself, lol, it's really quite funny actually, it would make a great short film hehehe anyhow, well i've only recently started going to the doctor, cause i was just like... alright wtf is this? and why do i have it? could'nt get answers, just a bunch of creams, and regimes to follow, great, cause well with my pot smoking lazy ass this is jus another tedious annoying thing to keep up with, but i'm doing it, a day at a time, i have good days and i have bad days, but most importantly i try not to let it bother me, i date, i hang out, i do whatever my heart desires with no boundaries, its life and life is short, we gotta enjoy it, ironically however since being on this site, i've noticed i have become a lil depressed, the site has made me more aware of my disease and there are so many people on here that are so sad, now maybe i'm sad for everyone else, or maybe i'm sad for me, whatever it is though, this site has been life changing for me, it's like a whole secret society of fellow vitiligans, and well it's teaching me to recognize and accept myself, i guess to stop being in denial, all these years of being brainwashed into thinking there is nothing wrong, well it hurt me, i could have looked into treatment long ago, well whatever it's doing, i like it, it's grounding me <3
Well, it happens to me sometimes my friends(who does not know i have vitiligo because i hide it with make up or clothes, at least i think they have not noticed it) point me out that i have a white spot in my right eye(then is when i think damn ! can someonechange the subject PLEASEEE) I dont know whether there are my teenagers hormons or what but I would really want to know your stories and how you started to accepting it ....
I was diagnosed as a child and have been primarily de-pigmented for a couple of years now and I still can't get over the looks. There are times where I'm out in public and all the sudden I feel as if people are staring at me because of my spots (which aren't there anymore but I still feel spotted).
In the summer a lot of people will comment on how pale I am which makes me incredibly self-conscious. There are times where I'll use that opportunity to educate people about my vitiligo and how I became de-pigmented and there are other times where I just walk away upset or a bit angry.
it's hard, i don't know if i'll ever get over the way i look. I understand what you mean though when you say your thankful but other times not so much. I do realize that Vitiligo has made me a better person, my feet are grounded and i don't take anything for granted, but it's also a curse because alot of the time i feel like i can't be myself, like i have to work EXTRA hard for ppl to accept me. :( It sounds stupid, but that's how i honestly feel.
I get the same way, I've been living with my spots for 21 yrs now, so I am very used to them. I actually appreciate my spots, as an artist I like to be unique. Most of the time I don't notice I have spots, but once in a blue moon I realize it and become uncomfortable. This happens usually when someone is staring, the immediate reaction is to hide but I try to reverse my instincts and bare it bravely. It's something I've been trying to do since highschool, I'm getting better at it and I think it does something crazy to the person staring when you stare back brazenly and with confidence. There probably thinking wow, I couldn't do that If I were in their shoes.
Our reactions to peoples stares have to do with society's belief of what is considered perfect. They might be judging us on our skin, but someone else is judging them on some insignificant thing. So since no one is perfect why do we judge? Human nature...
I thank my vitiligo then for making me less judgmental towards others, more aware of other people and how we should treat others, because we all have something we don't like and something we get judged for.
Hey Myriah, I agree with you. I value my spots for adding an extra little je ne sais quoi, a uniqueness. But just like you say, sometimes the looks are disconcerting and no matter how they can be invisible to you, all of a sudden you feel them become the elephant in the room.
Ramdein > Rachelle HoudeDecember 27, 2009 at 6:39am
Very true.. Sometimes those patches look so unimportant... and suddenly they could play havoc in my mind.
Same thing 2 different reactions.. Stupid Mind... :)
Hello Rachelle, Happy Holidays it's hard to get used to our Vitiligo because the patterns change,Vitiligo is such a progressive disorder because it's constanlty changing you may notice more depigmented spots in some areas and also in other Areas where you may need Mirrors, I have learned to embrace my Vitiligo by accepting it as a part of me. Iv'e really never been a church type of person but I now attend church and I generally feel better about myself and my Vitiligo
Rachelle Houde > Carl R. ManleyDecember 26, 2009 at 3:24pm
Thanks for your words.
I am not a religious person, but I am very spiritual and I try figuring out sometimes why I had to have this disorder. But then again, doesn't everyone have something 'wrong' with them that they try to explaining?
I guess it forces us to check our own reactions to people who look different. There is a beauty in people with vitiligo. Our spots are literally like snowflakes. Sometimes, I'm actually fascinated by the beauty in our vit.
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In the summer a lot of people will comment on how pale I am which makes me incredibly self-conscious. There are times where I'll use that opportunity to educate people about my vitiligo and how I became de-pigmented and there are other times where I just walk away upset or a bit angry.
I get the same way, I've been living with my spots for 21 yrs now, so I am very used to them. I actually appreciate my spots, as an artist I like to be unique. Most of the time I don't notice I have spots, but once in a blue moon I realize it and become uncomfortable. This happens usually when someone is staring, the immediate reaction is to hide but I try to reverse my instincts and bare it bravely. It's something I've been trying to do since highschool, I'm getting better at it and I think it does something crazy to the person staring when you stare back brazenly and with confidence. There probably thinking wow, I couldn't do that If I were in their shoes.
Our reactions to peoples stares have to do with society's belief of what is considered perfect. They might be judging us on our skin, but someone else is judging them on some insignificant thing. So since no one is perfect why do we judge? Human nature...
I thank my vitiligo then for making me less judgmental towards others, more aware of other people and how we should treat others, because we all have something we don't like and something we get judged for.
Same thing 2 different reactions.. Stupid Mind... :)
Hello Rachelle, Happy Holidays it's hard to get used to our Vitiligo because the patterns change,Vitiligo is such a progressive disorder because it's constanlty changing you may notice more depigmented spots in some areas and also in other Areas where you may need Mirrors, I have learned to embrace my Vitiligo by accepting it as a part of me. Iv'e really never been a church type of person but I now attend church and I generally feel better about myself and my Vitiligo
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I am not a religious person, but I am very spiritual and I try figuring out sometimes why I had to have this disorder. But then again, doesn't everyone have something 'wrong' with them that they try to explaining?
I guess it forces us to check our own reactions to people who look different. There is a beauty in people with vitiligo. Our spots are literally like snowflakes. Sometimes, I'm actually fascinated by the beauty in our vit.
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