Hi folks,
I've had Vitiligo for about 25 years. In that time I've been asked
* was it a burn (once),
* what was 'wrong' with my face (once),
* what were the white patches on my face (a counseller asked me this!)
and
* did I have Vitiligo (on a boat trip) from somone else who had it
4 questions in 25 years.
What have been your experiences and were they difficult, upsetting etc...
The one that upset me was the second one.
Mike
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ya'll had it pretty easy i guess the people around me was just more cruel... i have had people ask me about the burns and all that... i don't get to many question anymore cuz i give stupid responses...
i told one person that i fell in bleach and proxcide and set iin the sun to long...
someone actually asked me did i kiss uh hot skillet...
uh kid ask me what it was on my lips then told me to lick it off...
another ask did i bite my lips to much...
then i was in uh yahoo chat one day with my pic posted up...
and they was killin on me the whole time i was in there... but i didn't leave cuz it wud of made me feel like they won... they wasn't even creative with just stupid...
one said looked like i ate uh bag of powder donuts... and another said looked like i kissed uh chalked board... i guess i set my self up for that...
uh chick even asked me was my parents zebras...
somebody act if i didn't drink enough water thought i had liver something...
Lots of replies to this post. Some of them are very funny. It really helps to read how some people have dealt with this by using humor or educating people. That helps us all. I can also relate to how it hurts to feel different. I once had a "friend" explain to someone else that asked me about the spots on my hands "Isn't that strange!?! She's going to go like that all over her body!" I didn't used to notice cashiers not wanting to touch my hands until I read about it happening to other people on this site and then I realized it had happened to me before, like change being placed on the counter instead of in my hand and handing me back my debit or credit card just holding a tiny bit of the corner. That was really depressing. So, I too, have begun to wear long sleeves to cover my spotty arms and gloves when driving or outside, hoping that I will get rid of any tan I have and lighten up enough that the spots aren't as noticeable. And I have grown to be very fond of all of you that post here and tell your story, ask questions and contribute advice. What a wonderful group of people. I'm so glad I stumbled upon this site and thanks to Steve for starting it.
The worst one i have had was probably in Middle School, I had another student tell me, "you're suppose to paint your house, not you're self" Luckily a lot of the other students in my class had grown up with me and had known me before i even had vitiligo, so they were quick to defend me. But it still hurt. That's prolly the worst comment I've gotten, mostly because i started wearing long sleeves and started avoiding everyone, in hopes of avoiding another hurtful comment.
I am a middle school teacher new to the district, and I had a student ask me if I had Vitiligo. I was shocked he even knew what it was. I simply replied yes and asked him if he noticed my white spots. He said that he did notice them. Another student who heard us talking asked if that's what Michael Jackson claimed to have. I replied that he did indeed have Vitiligo. He shared his skepticism with all of us. I felt like I was educating the students.
I have same thinking like you. Some small spots on my neck lasting 15+ years and they are always happy staying there.
At beginning. i was upset, but right now i just ignore them and i usually wear scarf hiding them.
I was refered to as the girl with the large birthmark when I was in hosp having my son and that was how they refered to me for the whole two weeks I was in there. I am now totally white and I get comments 'wow you look pale' 'are you ok you look very pale' had people put their arms next to mine to show me how brown they are. Every comment still hurts even though I have lived with it for over 30 years.
I have had many comments in my 55+ years of having vitiligo.
The hurtful ones:
I was called "Patches" as a kid in school.
Giggles, stares and pointing.
"That smells awful" said by brother, as my mom was dying my white hair as a young teen.
Brother said, "She must have leprosy". I was a young teen. He laughed.
Did someone spill paint on your hands.
Did you get burned?
Muffled eewwooos as some girls walked by me.
Looks like your suntan is wearing off as I was typing at work.
Plus, I had to wear thick glasses and was teased about wearing pop bottle bottoms.
That's enough for now, ouch......
As a depigmented older adult I was asked many times "Why are you so white?
After fair skin became acceptable I received some good comments like:
Your skin is so perfect, you look so young, you have such nice skin, and even,
I love your hair and you have such a beautiful complexion. and how do you keep your skin looking so healthy,
I wish I had skin as nice as yours.
It took me a long time to just accept their comments, because in my mind I remembered what all I went through before I reached total depigmented vitiligo. Seemed incredible! If they only knew what I had gone through. And I guess I will always miss my olive brown pigments.
Thanks for the topic.
Patty
I have been considering depigmentation and it brought a smile to my face to read your post. I have vit over 50% of my body. During the summer I am in the sun (alot) and my spots started to freckled and I keeping hoping that it will completely repigment but during the process it is extremely disfiguring and it never completely fills in....and it will only start to fade as the season changes back to winter.....I have the option of a tanning salon, but I am finding out that I would rather have a beautiful white complextion such as you have described. Could you please expand on your depigmentation? Thanks again Patty for your post.
Peggy
Hi Peggy,
I have lost all of my skin pigmentation from 50+ years of natural progression of my vitiligo. I lost a lot of my hair color, too, at a young age. I am happy with the way I look now, after going through so many years of the spreading white patches. Then it became more like the brown patches on my fair skin color. Finally, after going through menapause, I became totally depigmented. I enjoy a pretty normal life, but I carry sunblock in my purse and use it when I am in the sun for extended lengths of time. I go swimming and enjoy the sun and outdoor activities. I have learned to protect my skin, sometimes with my small umbrella that fits in my purse. And in the car on a trip I have a pretty white sarong I cover my arms with while my husband is driving. I have pretty much learned my limits with sun exposure. I always wear SPF 15 facial moisturizer under my makeup. So by now this all has become pretty routine and instinctual. Oh, I love wearing pretty nail polish and I know which colors of clothing look best with my fair skin. Well, I guess I have said enough for now. Blessings, Patty
Kristy Ward > Patricia StegallAugust 6, 2009 at 8:54am
The spot on my foot tends to be the one that everyone notices (I love wearing sandals and flip flops.) My other spots are under my chin, on my elbows, a few small ones on my hands, my inner thighs, and going down my sides starting at my underarms. I also have a scar from my childhood that never re-pigmented which I'm guessing could have been the very first sign of my vitiligo.
A family member once asked what was on my foot, and my mother-in-law (the nurse who knows all!) interrupted and said "Oh, she has a fungus." My husband and I looked at each other, and I simply replied with "No, it's not a fungus; it's called vitiligo."
Replies
i told one person that i fell in bleach and proxcide and set iin the sun to long...
someone actually asked me did i kiss uh hot skillet...
uh kid ask me what it was on my lips then told me to lick it off...
another ask did i bite my lips to much...
then i was in uh yahoo chat one day with my pic posted up...
and they was killin on me the whole time i was in there... but i didn't leave cuz it wud of made me feel like they won... they wasn't even creative with just stupid...
one said looked like i ate uh bag of powder donuts... and another said looked like i kissed uh chalked board... i guess i set my self up for that...
uh chick even asked me was my parents zebras...
somebody act if i didn't drink enough water thought i had liver something...
i heard it all...
I have same thinking like you. Some small spots on my neck lasting 15+ years and they are always happy staying there.
At beginning. i was upset, but right now i just ignore them and i usually wear scarf hiding them.
The hurtful ones:
I was called "Patches" as a kid in school.
Giggles, stares and pointing.
"That smells awful" said by brother, as my mom was dying my white hair as a young teen.
Brother said, "She must have leprosy". I was a young teen. He laughed.
Did someone spill paint on your hands.
Did you get burned?
Muffled eewwooos as some girls walked by me.
Looks like your suntan is wearing off as I was typing at work.
Plus, I had to wear thick glasses and was teased about wearing pop bottle bottoms.
That's enough for now, ouch......
As a depigmented older adult I was asked many times "Why are you so white?
After fair skin became acceptable I received some good comments like:
Your skin is so perfect, you look so young, you have such nice skin, and even,
I love your hair and you have such a beautiful complexion. and how do you keep your skin looking so healthy,
I wish I had skin as nice as yours.
It took me a long time to just accept their comments, because in my mind I remembered what all I went through before I reached total depigmented vitiligo. Seemed incredible! If they only knew what I had gone through. And I guess I will always miss my olive brown pigments.
Thanks for the topic.
Patty
Peggy
I have lost all of my skin pigmentation from 50+ years of natural progression of my vitiligo. I lost a lot of my hair color, too, at a young age. I am happy with the way I look now, after going through so many years of the spreading white patches. Then it became more like the brown patches on my fair skin color. Finally, after going through menapause, I became totally depigmented. I enjoy a pretty normal life, but I carry sunblock in my purse and use it when I am in the sun for extended lengths of time. I go swimming and enjoy the sun and outdoor activities. I have learned to protect my skin, sometimes with my small umbrella that fits in my purse. And in the car on a trip I have a pretty white sarong I cover my arms with while my husband is driving. I have pretty much learned my limits with sun exposure. I always wear SPF 15 facial moisturizer under my makeup. So by now this all has become pretty routine and instinctual. Oh, I love wearing pretty nail polish and I know which colors of clothing look best with my fair skin. Well, I guess I have said enough for now. Blessings, Patty
A family member once asked what was on my foot, and my mother-in-law (the nurse who knows all!) interrupted and said "Oh, she has a fungus." My husband and I looked at each other, and I simply replied with "No, it's not a fungus; it's called vitiligo."
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