I am "coming out" as vitiligan.
I notice myself looking for people with vitiligo when I am walking down the street, in a store, anywhere and I wonder...Are there others doing the same? Is there someone with vitiligo who has it covered? Is there someone I am missing connecting with, having a shared experience with, supporting...seeing? I have a feeling there are more vitiligans than any of us see and I for one want to see you. I think it is critical that we are seen and accepted. How are we to expect that others have awareness of things, like vitiligo, that make us different if we hide our difference?
Irrespective of beliefs, notice that the GLBT community has gained more acceptance as more people have come out in our communities and in the public eye. People have an opportunity to know someone who is gay or see them on TV and learn that they are not so different from the rest of the population. Even our president has come out in favor of marriage equality citing his personal experiences as the reason. That would have never happened if the people he knew were in the closet and hiding their difference.
We need to be seen. I need you to be seen. I need to see you. And for the next vitiligan who wants to see that she is not alone, that her difference isn't something to be ashamed of or hidden, that she is the way she was meant to be and nothing is wrong with her...you can count on me to be seen.
For you, my community, my vitiligo family...I will not cover my vitiligo anymore. If you see me on the street, you will know that I understand, you are not alone, and that life goes on.
Please join me in raising awareness for vitiligo. I encourage you to come out and be seen. Thank you.
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I thing the all vitiligan feels the same. Sometimes we more optimistic,sometimes feels very bad... I try keep my self how much ,how I can in good shape.I read a book who write doctor and he says what we if we can need to let little bit more for our self...For ex:By a nice clods ,be in good make up every day,to have a good perfume,man,ped ,training our bodies ....To to all what we can feel little bit better..My mom have vitiligo has too.And she don't worry about it a lot...And you know people reactions on her very natural...I thing we thinking about us to bad...Of course I can not walking on the street woth open my legs or arms ,but we CAN NOT DO nothing in this moment and we need have a hope ,maybe some time....we all will be O.K.
I've found that the only people that ever say anything to me are other people with vitiligo. The other day I was coming home from the ball game, I saw a guy with white blotches on his hand and I showed him my arm and "Same shit Bro."
One day a very attractive woman ran up to me and said "You have what I have!" and I thought Whoa" and then she showed me her arms which were completely depigmented. I said to her "At least you're one color."
I can out on FB for Worldwide Vitiligo Day June 25 2012. One of my highschool classmates told me that he has it too. I have mixed feelings about approaching someone with vitiligo. It may be a very private thing for some. I see folks with vitiligo all of the time. I would love if someone would approach me to discuss vitiligo but I do not think that I will approach anyone.
I did that too! How did it feel? Now some of my coworkers know I have it and what it is. I am more cautious about sharing medical info with work, but I feel relieved that they know. Everyone had been wondering what is going on. It's hard to keep a secret when I have to block off chunks of time 3-4 times a week every week for Dr. Appts....Hopefully their questions about if my skin is changing because I have leprosy or if my hair is falling out because I have cancer (I have Alopecia as well as vitiligo) have been answered :)
I used to know a woman with very visible vitiligo when I was a teenager. Then later at another church I attended I met another lady with the condition too. I used to not know what to say to them. I always thought how awful it must be to have to deal with people staring, etc. About 7 years ago or so, I developed a few spots on my face. But if I think about it, the condition may have started back in the late 1990's. I remember one particular weekend that I had a very stressful episode and the next morning I woke up to a pencil eraser sized gray spot on my hair. It never went away. It was several years later that the first signs of vitiligo on my face and private areas showed up. Now a few years later, it has mostly affected my face. A good portion of my face in fact. But the other areas are a few small spots on both hands.
I'm now looking to get more serious about finding a way to reverse this. I have no family history at all, so doesn't seem genetic. I think it was all stress related. After the first incident many years ago, more recently in the 2003 - 2007 time period I went back to college and get my degree, all while having a family, trying to run my own business and pay all the bills associated with these activities. I didn't get as much sleep as I should have and even the stress of my personal life was rolled into all this. Especially during the past 2 years or so.
Glad I found this web site. I already have a couple others I visit from time to time. So I'm hoping I can learn and contribute too.
This post makes me think about when I went to London and I was in the London Eye. There was an Indian man with his family who had very wide spread Vitiligo. I remember I couldn't even enjoy the ride because all I kept thinking about was how I wanted to run up to this guy and yell "HEY ME TOO!". I can probably count on one hand how many people I have noticed with Vitiligo and each time I want to approach them. I wonder if that person feels as alone in this disease as I do, and maybe me saying hi would make their world a little less lonely.
Yep. That's me. "Hey! Me too! " with a wide eyed look of hope on my face. I am all for diversity, but there is nothing like being around people who get you and have a similar experience in life (be that race, sexual orientation, religion, or vitiligo). I can't deny it feels good when I have been on my own for so long.
Love this! So glad you posted this comment. I shared a link to the group on Facebook, and tell others about it as often as I can. I generally find though that not only am I the only person that I know that has it, with the exception of two cousins who have yet to be 'officially' diagnosed, I'm usually the first person with Vitiligo that others meet. I can't tell you how many times I've explained that yes, the disease Michael Jackson had was in fact a real disease. And yes, I have it. I'd love to have someone I could meet for lunch or whatever to share thoughts and help each other cope. Someday!
Thank you. I have also been surprised that so many people have never heard of vitiligo...and have said many times "you know, what Michael Jackson had". It is actually weird to see some people react as if I said he was my brother...not sure if anyone else had gotten this reaction. Like somehow I am cooler because MJ and I share a disease. If only we lived in the same town! I'd have lunch with you :)
Replies
Hello Gia, I am agree with you. Make a world wide Group in raising awareness for vitiligo.
Hy,
I thing the all vitiligan feels the same. Sometimes we more optimistic,sometimes feels very bad... I try keep my self how much ,how I can in good shape.I read a book who write doctor and he says what we if we can need to let little bit more for our self...For ex:By a nice clods ,be in good make up every day,to have a good perfume,man,ped ,training our bodies ....To to all what we can feel little bit better..My mom have vitiligo has too.And she don't worry about it a lot...And you know people reactions on her very natural...I thing we thinking about us to bad...Of course I can not walking on the street woth open my legs or arms ,but we CAN NOT DO nothing in this moment and we need have a hope ,maybe some time....we all will be O.K.
I've found that the only people that ever say anything to me are other people with vitiligo. The other day I was coming home from the ball game, I saw a guy with white blotches on his hand and I showed him my arm and "Same shit Bro."
One day a very attractive woman ran up to me and said "You have what I have!" and I thought Whoa" and then she showed me her arms which were completely depigmented. I said to her "At least you're one color."
I can out on FB for Worldwide Vitiligo Day June 25 2012. One of my highschool classmates told me that he has it too. I have mixed feelings about approaching someone with vitiligo. It may be a very private thing for some. I see folks with vitiligo all of the time. I would love if someone would approach me to discuss vitiligo but I do not think that I will approach anyone.
I used to know a woman with very visible vitiligo when I was a teenager. Then later at another church I attended I met another lady with the condition too. I used to not know what to say to them. I always thought how awful it must be to have to deal with people staring, etc. About 7 years ago or so, I developed a few spots on my face. But if I think about it, the condition may have started back in the late 1990's. I remember one particular weekend that I had a very stressful episode and the next morning I woke up to a pencil eraser sized gray spot on my hair. It never went away. It was several years later that the first signs of vitiligo on my face and private areas showed up. Now a few years later, it has mostly affected my face. A good portion of my face in fact. But the other areas are a few small spots on both hands.
I'm now looking to get more serious about finding a way to reverse this. I have no family history at all, so doesn't seem genetic. I think it was all stress related. After the first incident many years ago, more recently in the 2003 - 2007 time period I went back to college and get my degree, all while having a family, trying to run my own business and pay all the bills associated with these activities. I didn't get as much sleep as I should have and even the stress of my personal life was rolled into all this. Especially during the past 2 years or so.
Glad I found this web site. I already have a couple others I visit from time to time. So I'm hoping I can learn and contribute too.
This post makes me think about when I went to London and I was in the London Eye. There was an Indian man with his family who had very wide spread Vitiligo. I remember I couldn't even enjoy the ride because all I kept thinking about was how I wanted to run up to this guy and yell "HEY ME TOO!". I can probably count on one hand how many people I have noticed with Vitiligo and each time I want to approach them. I wonder if that person feels as alone in this disease as I do, and maybe me saying hi would make their world a little less lonely.
Love this! So glad you posted this comment. I shared a link to the group on Facebook, and tell others about it as often as I can. I generally find though that not only am I the only person that I know that has it, with the exception of two cousins who have yet to be 'officially' diagnosed, I'm usually the first person with Vitiligo that others meet. I can't tell you how many times I've explained that yes, the disease Michael Jackson had was in fact a real disease. And yes, I have it. I'd love to have someone I could meet for lunch or whatever to share thoughts and help each other cope. Someday!
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