Johnny, why are you da man? I mean, c'mon - how can I NOT be? :)
Seriously, people alwas ask me how I can NOT get treatment for my Vitiligo, how I can NOT think about this disease, etc.
My response is this: I used to try. I used to worry. I used to think about how people are looking at me. . .I hit a low point in my life. I was letting my this disease live my life, rule my mind. I used to wear gloves (kind of like Michael Jackson, Hee Hee! - did you know that is why MJ wore the bejeweled glove?)
Then I had a revelation - I don't have to go through this. I don't have to let others judge me and I don't have to worry. If people don't like it, that is THEIR issue, not mine. I decided to get educated on the subject and this education gave me the freedom to not fear this disease, my disease, and it empowered me. This newly-found empowerment gave me the courage to not hide my Vitiligo (notice I say MY Vitiligo?) but to embrace it and discuss it. This new-found revelation could not have come without the help of a support system - my family and friends.
Vitiligo makes me UNIQUE; it makes me. . .me. I am who I am, and even though I could try to change it, I have chosen not to.
This belief, I hope to pass onto my 9 month old son - to be who you are, live life, love, and educate.
Lack of education on this disease leads to ignorance, and it is up to us to educate the population - even if it is one person at a time.
So, when a person builds up the courage to ask me about my "spots", I inform them of the disease and its effects, and I point out my spot that most resembles Elvis (ah huh huh!)
If ANYONE here needs to talk, chat, etc. about how to deal with this disease, please contact me!
Johnny aka "big daddy"
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Maggie is truly beautiful! I believe that we have to remember that beauty is beyond our skin. It is not easy for me, but I try to remember that always.
Jonny, i have to say i can totally relate. I had the same experience tried to kill myself. That was many years ago not and like you i now embrace my vitiligo it's a part of me and i am definately a better person for it. I do not judge people based on their appearance.
I actually liked to be looked at now i wear bright clothes just so people will look. it's wierd the one thing that used to get me down the most i now thrive on lol.
And i love your philosophy, be who you are, live life, love, and educate. That is something i do everyday and like you hope to pass onto my son. Only 6 months old tho lol.
Can i add one last thing, i used to try every treatment going none of which work. Since about 5 years ago when i first came to terms with my vitiligo i have gradually repigmented on my own, not to a massive extent but enough for me to notice.
This is my first post as i only joined today. Anyone who wants to chat add me.
Johnny > Robert Charles FluinApril 30, 2009 at 2:55pm
It was not my intent to share my story with others to show them how they cannot accept, but to show them that they can accept who they are, regardless of who they are.
A friend of mine, Maggie, who is african-american, has severe vitiligo, especially on her face. She was very reclusive for many years and would not even leave her house in fear of the treatment, stares, etc.
Through the help of members of the NVFI she has grown to such a beautiful person, both inside and out, and has become a valuable member of the NVFI and the vitiligo community as a whole. She is a living example of someone who has truly accepted who she is - a person living with vitiligo, not a person letting vitiligo live their life for them. If anyone wants to see a beautiful picture of Maggie, here is a picture of her (attachment)
I dont know if my first reply was sent but basically Johhny the past couple months talking to so many people with the disease men, and woman. It is soo different dealing with this disease as a woman. I respect what you have to say, but for me reality is that it does matter sometimes what people think and it's not easy and all to live with this disease, and it's hard to not worry about the comments you get from people when most people I know dont have a clue with what vitiligo is. The world is viewed like us woman have to be "pretty" all over and I know we shouldn't go off those things but again reality hits and woman are way more sensitive and for me having this almost my whole life, it has never been easy. Just recently am I feeling way better about myself and that's only because I finally decided to cover my spots with tattoos. And that was only because I knew I would never be able to afford the surgery. I understand what you are saying though......
Kelly, i agree with you. It is way harder being a woman with this disease. We have alot more expectations put on us. Be this skinny, dress like this, act like this or you get a label put on you. Overall women have it a whole lot worse. It's definitely harder. But at the same time someone always has it worse than you. From what i've seen you say you only have one spot on your leg that hasn't spread in yrs. That's good, my spots have spread rapidly over the yrs and continue to spread everyday. So no, i'm not saying shut up and deal with it,god no. I'm just saying take a little relief girl. It's not as bad as it could be. stress does make it worse you know. And i would be the last person to tell anyone to shut up and deal with it. I'm still praying for some miracle to come our way and i will never give up beleiving. Vitiligo makes me very angry and i refuse to give up and accept it. Don't you either!!!! I hope you understand where i'm coming from and don't take it the wrong way.
Thanks Amy and Lady Jo for responding, I knew you girls had my back!! LOL! I mean, I know you would understand of course. Amy please go to my page and click on my blog if you get a chance to see my before and after pics of getting most of my vit covered with a tattoo! I do feel a lot better!!
Replies
I actually liked to be looked at now i wear bright clothes just so people will look. it's wierd the one thing that used to get me down the most i now thrive on lol.
And i love your philosophy, be who you are, live life, love, and educate. That is something i do everyday and like you hope to pass onto my son. Only 6 months old tho lol.
Can i add one last thing, i used to try every treatment going none of which work. Since about 5 years ago when i first came to terms with my vitiligo i have gradually repigmented on my own, not to a massive extent but enough for me to notice.
This is my first post as i only joined today. Anyone who wants to chat add me.
A friend of mine, Maggie, who is african-american, has severe vitiligo, especially on her face. She was very reclusive for many years and would not even leave her house in fear of the treatment, stares, etc.
Through the help of members of the NVFI she has grown to such a beautiful person, both inside and out, and has become a valuable member of the NVFI and the vitiligo community as a whole. She is a living example of someone who has truly accepted who she is - a person living with vitiligo, not a person letting vitiligo live their life for them. If anyone wants to see a beautiful picture of Maggie, here is a picture of her (attachment)
Maggie.jpg
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