I have read a number of posts saying, you have light skin i wouldnt let my vitiligo affect me if i was that colour.
That is simply not true, vitiligo effects everyone the same irrespective of their natural skin tone. I work for a vitiligo charity in the UK and i have vitiligo myself. I know from expreince that how vitiligo effects someone depends on the personality and ability to cope.
I have spoken to many people from different backgrounds, ethnicity, age gender.
I have met an asian person who has one small patch on their elbow and it has ruined their life, i have met a white person who is 90% covered and copes ok, i have met a black person who is 60% and it doesnt affect them in the slightest.
All i am trying to say is just because someone has light skin and their vitiligo doesn't show as much doesnt mean that it effects them any less. At the same time if someone has dark skin and their vitiligo shows doesnt mean it effects them any more.
Everyone is different and this remains the case with vitiligo
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I actually had a doctor tell me that since my daughter is white we shouldn't treat her!!! My daughter is 5 now and is ok with herself as she is, but that does not mean it will stay that way as she gets older. I would say she is about 50% and she has grey running thru her hair.. so we are not talking about just a couple spots.
Thanks for this post Robert, I have really come to understand this out of experience that 'how vitiligo effects someone depends on the personality and ability to cope'.
I use to feel same way initially as in what are these white guys talking about when we blacks are trying ti live with Vitiligo, I know better now managing a foundation and really getting to talk with people from different races every now and then.
There was a man I met who shared his wife's experience and Vitiligo with me, he was so worried about how Vitiligo has affected his household, how his wife cant wear normal skirts anymore, but long skirts, when I asked him where his wife got it, he said one big patch on her leg,I couldnt but was really amazed (then I had not gotten to the understanding I have now on how Vitiligo affects people's personality and not necessarily the extent of Vit). I asked him a question, what would you say to me having Vit on my face, a single lady and not concealing it? He blurted telling me that I do not have any idea what the wife and his household is going through, he was angry at my question as far as he is concerned its all about his wife.
Truly Vitiligo is really strange in Africa like it is in other places I believe, it is believed to be from all sorts, curse, nemesis, caused by some mystic, spiritual illness, burns and all sorts, the segregation, stigma even different cases of accusing someone to have inflicted them with the condition through diabolical ways..........but in all these belief not withstanding it boils down to personality and ability to cope.
Hello Robert I understand what you are saying but lets be honest the darker your skin or complexion the more noticeable your vitiligo is because of the contrasting issues involved with a darker complected person, I have a good friend of mines who's your complexion and he has vitiligo but when we were walking side by side people pointed my vitiligo out almost instantly and he even noticed the reaction too. as I have mentioned in a previous forum vitiligo affects us all in the same way but if your a person of color your noticed a little more than say somebody who is of a lighter complexion, I used to get mad and say why does black people turn white but white people can't turn black because maybe if vitiligo would cause you too to get brown spots on your skin would you be saying the same thing think about it
Cara Twillie > Carl R. ManleyNovember 27, 2010 at 11:01am
I really think we all just need to stop turnin this into a "my situation is worse than yours because........." Color and complexion doesn't matter.....Vitiligo can be devastating to the lightest complexioned person as much as it is to the darkest complexioned person. Sure vitiligo is more "appearant" in people with darker complexions....that is just a fact.........doesnt make it any easier or harder to deal with. I don't know.....maybe I just don't get it.
any change to our image of SELF is emotionally devastating. whether others notice it or not. we are our own worst enemy in that regard. which is why someone 50% depiged can be at peace with themselves, and someone with a white spot on their elbow can feel like a freak of nature. Its all in our mind, we need to all be at peace and accept that we are more then just skin tones. and instead feeling hurt by others ignorance, try to teach them, so they wont repeat the incident with the next person they find.
if they cant be taught.... F them, ignorant people can be taught. stupid people ignored. feel good about yourself.
no one can make u feel bad without your assistance.
and when u need support. come here, we'll gladly give it to u.
i am very pale and i have vit. people still notice it and say mean things because they dont understand it. they dont know what it feels like and im sure u all no how mean kids can be. ive grown u with this condition my whole life and have had people tell me well its more of my derms tell me your lucky your not dark skined. i mean it may be harder to cope when it is easyer to notie but its still hard to cope no matter what color your skin is and i dont no anyone who has this that i can talk to and wish i did. because well no one does understand untill they have it.
i think it's one of these things whereas if you dont have it, you dont know the feelings of having it. sure it's cosmetic, like a burn victim lost face is cosmetic. it still works, but it's not what it should be. people dont get it till they got it.
i feel totally different about it now then before it showed up.
most illnesses are like that. u can have sympathy for someone with an illness, but till u have to deal with it, u dont fully understand it. (parents of VIT children might because i think they can feel what their children feel)
Sarah M > Marty BlackEagle-CarlNovember 27, 2010 at 11:24am
''i think it's one of these things whereas if you dont have it, you dont know the feelings of having it''
Absolutely true. I will definitely be stealing this line....I hope you won't mind:)
As for the post? I totally agree...'colour doesn't matter'. It all really depends on individuals feelings, regardless of their colour/race.
Thank you for stating this. My son is very light skinned, however, his having fair skin does not mean that he has the auto-immune disease vitaligo any less than anyone else who has it. Being told that it's not as big of a deal for him to have vitiligo because he has light skin can make him feel like he doesn't have the right to worry about it, to express his feelings and fears, or be effected emotionally by it.
He is 10 years old and he has interpreted comments like "you're lucky that your skin is so light to begin with." to mean "yeah you have it but you don't really have valid reasons to be concerned or have feelings of uncertainty about your having it because it's not as bad as it could be."
***Now it's time for my disclaimer...I have been guilty of saying things just like this several times. Now I am more aware that he has the right to be just as concerned as anyone else. If I minimize things too much he will not feel as though his concerns or fears are validated, and then he may not choose to communicate with me about the way that he is feeling.
I am trying to help him maintain a high degree of self-confidence and self-esteem, that I think is the most important factor relating to the social/emotional aspects of this disease, not the color of initial pigment before onset.
Replies
I use to feel same way initially as in what are these white guys talking about when we blacks are trying ti live with Vitiligo, I know better now managing a foundation and really getting to talk with people from different races every now and then.
There was a man I met who shared his wife's experience and Vitiligo with me, he was so worried about how Vitiligo has affected his household, how his wife cant wear normal skirts anymore, but long skirts, when I asked him where his wife got it, he said one big patch on her leg,I couldnt but was really amazed (then I had not gotten to the understanding I have now on how Vitiligo affects people's personality and not necessarily the extent of Vit). I asked him a question, what would you say to me having Vit on my face, a single lady and not concealing it? He blurted telling me that I do not have any idea what the wife and his household is going through, he was angry at my question as far as he is concerned its all about his wife.
Truly Vitiligo is really strange in Africa like it is in other places I believe, it is believed to be from all sorts, curse, nemesis, caused by some mystic, spiritual illness, burns and all sorts, the segregation, stigma even different cases of accusing someone to have inflicted them with the condition through diabolical ways..........but in all these belief not withstanding it boils down to personality and ability to cope.
Hello Robert I understand what you are saying but lets be honest the darker your skin or complexion the more noticeable your vitiligo is because of the contrasting issues involved with a darker complected person, I have a good friend of mines who's your complexion and he has vitiligo but when we were walking side by side people pointed my vitiligo out almost instantly and he even noticed the reaction too. as I have mentioned in a previous forum vitiligo affects us all in the same way but if your a person of color your noticed a little more than say somebody who is of a lighter complexion, I used to get mad and say why does black people turn white but white people can't turn black because maybe if vitiligo would cause you too to get brown spots on your skin would you be saying the same thing think about it
if they cant be taught.... F them, ignorant people can be taught. stupid people ignored. feel good about yourself.
no one can make u feel bad without your assistance.
and when u need support. come here, we'll gladly give it to u.
i feel totally different about it now then before it showed up.
most illnesses are like that. u can have sympathy for someone with an illness, but till u have to deal with it, u dont fully understand it. (parents of VIT children might because i think they can feel what their children feel)
Absolutely true. I will definitely be stealing this line....I hope you won't mind:)
As for the post? I totally agree...'colour doesn't matter'. It all really depends on individuals feelings, regardless of their colour/race.
He is 10 years old and he has interpreted comments like "you're lucky that your skin is so light to begin with." to mean "yeah you have it but you don't really have valid reasons to be concerned or have feelings of uncertainty about your having it because it's not as bad as it could be."
***Now it's time for my disclaimer...I have been guilty of saying things just like this several times. Now I am more aware that he has the right to be just as concerned as anyone else. If I minimize things too much he will not feel as though his concerns or fears are validated, and then he may not choose to communicate with me about the way that he is feeling.
I am trying to help him maintain a high degree of self-confidence and self-esteem, that I think is the most important factor relating to the social/emotional aspects of this disease, not the color of initial pigment before onset.
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