Hi I am Tiffany, and I have vitiligo. Whew, I said it. Now I guess I have to deal with it.
How? I understand that it is not life threatening. I understand to you it's not "so bad". I understand that it "could be worse". I am tired of people saying this to me and am happy I found a place that can help me cope, rather than try to dismiss my feelings towards what is happening to me.You go your whole life not hearing the word vitiligo, until you wake up one morning and have a white mark on you somewhere. You shrug it off as a scar, but then it grows and spreads and then there are more. The worse part? You are completely helpless to defend yourself.
First there was confusion. What is this? Why do I have it?
Followed by anger. Why the eff won't this go away?
Followed by disgust. Will my husband still love me, and think I am pretty enough? What will my children think? Will they be embarrassed to be seen by me?
I don't know really what's next. I haven't moved on yet. This is the bravest I have ever been about my feelings. Usually I just make a light joke about it when people ask "whats wrong with your hands?" I want to scream and run, but what if I pass this on to my children? That thought is the only reason I stay sane on the outside. I want them to remember that I was strong, even though it kills me to think they would ever have to deal with this.
Please know, I have a wonderful life. An amazing husband, who was my middle school sweetheart and three of the most beautiful children. I am just not coping very well with my changes that are reportedly going to get worse.
I am beyond happy I found you guys, I feel better knowing I have an outlet for the emotion and a friend to help sort through it.
Replies
The must important thing talk to people about it educate them the more you talk about it the more comfortable you are in your own skin, plus you have a strong foundation your husband and your kids and now this wonderful outlet vitiligo friends, write what you feel when you feel anger find someone to talk about it here, or your husband or a friend believe me thats the trick let the time cure it vitiligo doesn't define you as a person, Yes it hurts inside, yes it is annoying, yes we all want to control this thing that went out of control, but believe me you are getting stronger and you don't even notice it, Vitiigo i'ts going to teach you a lot of thing inside you. Don't hold your emotion if you want to cry get a moment that you are by yourself and let it go, grab a pillow punch the pillow let it all go out you will feel better and like I said, talk to people about vitiligo educate people and have confidence in your self people will stop looking at your vitiligo spot it will disappear for them when they see more deep inside. God Bless you come one you are strong go for it you still have a wonderful life to live ahead.
Hi Tiffany, I don't think there is anyone here who hasn't felt the dread that you describe so well. I've had this for four years and was just horrified that this would keep spreading.What will I look like in 6 months,12 months 10 years time? Internalised vitiphobia probably best describes it. But I've had time to reflect on what this self hating actually means to me, and yes I've had to become braver and more grown up about appearance and what it is to be beautiful. All that inner beauty stuff only goes so far. I've said it before and I'll say it again. Vitiligo does not make you ugly. There are handsome, fine looking people on this site who are not any less attractive for having vit all over their faces. Yes people look and sometimes comment, because we are a bit surprising to see, but I've long since given up on trying to control how people react to me. Vitiligo can take your confidence if you let it. The trick is to fess up when you're being negative; look people in the eye and enjoy the company of your friends and family.
hi tiffany, we all been there and felt the very same way you do. in your case, your bllessed that you have a loving and supporting husband (much harder when you single) and have healthy children. whenever i feel down and sad, about having viti, i tried hard to think all the good things i've been blessed with. great kids, two adorable granddaughter & loving family. please don't get me wrong, i still feel bother with viti, specially when i find a new white spot in my body and wondering how will i be able to cover that spot etc. but slowly i'm learning and trying hard, to be positive and just cover it with makeup as much as i can. the truth is, that no matter how much we stress about it, we don't have control over it. we're all here to support each other. don't hesitate to send me a message whenever you feel like talking.
Thank you everyone! I feel a lot better having said all of that out loud and saying it to people who get it, and are not judgeing gives it the strawberry on top (sorry, not a fan of cherries).
Thanks for listening :)
Hang in there Tiffany! I recently found this website as well and it will make you feel a lot better to discuss vitiligo with others who understand where you're coming from. Plus, there are several ways you can treat vitiligo; what works for one doesn't work for others but I'm encouraged that there will be a cure sometime in the near future and in the meantime, we can collectively come up with ways to treat it. I'm using protopic right now and it has not helped but others on this website have told me it take a while and to stay calm.
Peace be with you!
Hi Tiffany,
It is my thoughts that it takes another person with vitiligo, like myself, to truly understand all the feelings and thoughts that go along with having vitiligo. When I found support and understanding here, as well as other vitiligo support groups, I was validated. Just as you shared with us, it validated all that I went through for so many years. I could relate to so much of what you are going through. Thank you for sharing with us. I eventually lost all my pigment, total vitiligo. I have 2 children and 4 grandchildren and to date they have not acquired vitiligo, but it is a concern. I try to stay focused by living one day at a time. I am so grateful for this website, not only for myself, but for all who come here, venting, questioning and supporting one another.
May moments of peace surround you today,
Patty
Hey Tiffany, Im Danielle :)
I know what you mean and exactly how you feel. I had one small spot on my thumb that spread and spread and spread. I've had vitiligo for two years now and i don't think its getting any easier. Its seems like everyday I have new area's that I have to deal with and cope with. I say, Ok, now my thumb is completely white, Ok, now my eyebrows are white, and somehow I find I get through it, But there are really bad days where I'm not ok with it. That's when I log on here, and I find all the support in the world, and people who understand! My family and my boyfriend of 5 years can love me and support me all they want, but I find it really helps to talk to people who have vitiligo. I'm scared that when I have kids in a couple of years, will it effect them? I don't know the answers but it sure helps having people to talk to on here, I hope you find the love and support that I have found on this website :)
Takes time but it is a journey first! Hang in there!