Recently I have noticed more and more that my vitiligo is working it’s way around my face. This is an unwelcome development. I am aware that vitiligo spreads and contracts over time in an almost random fashion. I have hoped that my face would stay clear of the disease and yet still my fears have been realized.
Slowly, I have developed spots on my neck and around my lips and around my eyes. While it certainly is not something to be happy about, I have come to accept this as a fact of my life and move on. I try to spend as little time as possible thinking about this. No one has said anything; I don’t think too many people pay much attention to my face and its coloration. Still it does bother me. I know it could go away or it could spread further.
If I want I can always cover it with makeup or self tanning creams. I can cover it up no problem. No one would ever notice. And for some reason I don’t do this. I wear sun screen when I am going to be in the sun for a while, but I don’t use the self tanning creams/sprays. Why? Well, I don’t care as much as I thought I would years ago. It’s still my face, no matter how many colors make up my face and I am still me.
I have a patch of vitiligo near the bottom of my lip, and I’ve had it since I was in 5th grade ( about 11 ] and my lips are what you can say ” discolored “. I also have some patches only my right foot, and since I’ve fallen I have a patch on my left knee which is taking what seems to be taking forever to heal. I used to have tiny dots on my wrists, but they’ve gone away. I am dark skinned, so it shows more than anything. Who knew what this would bring me to? Now all i have to tell myself is expect the unexpected. Anyways, this sucks because I’m only 13 and have thought about suicide so many times that I can count :/ But I’ve told myself if I end my life, all my hopes and dreams would be drained. Think about all the people I would hurt, my niece keeps me motivated she’s only 2 and I want to be there to see her graduate, college. I cry everytime someone makes fun of me, I’ve been called bleached skin, Michael Jackson, and more. So many little things, but they hurt the most, and make my self esteem lower. I try to let it not get to me, but when I get home all hell breaks out. I don’t talk to anyone. I try to tell myself they’re just ignorant.. but it doesn’t help. There’s one other girl in my school that has Vitiligo, but I only speak to her at basketball practice. I sometimes want to start a conversation with her during the day, but I just don’t know how to. We have different personalities, but she’s the only other person that knows what it feels like to be in my shoes. Although for her she has a big circle patch on her forehead, and on her arms and legs. Her inner beauty shines through. She has the perfect smile, I guess one day I will talk to her. But probably not anytime soon.. Sometimes when people ask me, “What’s that on your lip,” or “What happened to your lip?” I just say nothing, but if they still continue to question me, I make up something dumb like It’s my allergies. Now, I give up, I’ve decided to speak up and say I have Vitiligo, it’s not contagious, if you still wanna talk to me; I’m here, if not.. It was nice meeting you. I believe I’m a nice person, but I guess now people judge you on the outside, before even saying, hello. I hope one day to meet someone with Vitiligo, or even many people; so I can just talk, because right now it seems no one understands. Mostly because where I live, there aren’t many people with the condition. But I feel like everything happens for a reason, and I am special in my own ways. -Eve.
Hi Eve,
I am grateful you decided to share your thoughts here. It is very brave of you to be so honest.
I love when you said “I am special in my own ways”. Eve, that is true. You are special in your own ways. I have had vitiligo for about as long as you now. There are some days where you just don’t want to face the world, you don’t want to deal with the mean and nasty comments of other people. And there are days where you totally forget you have vitiligo. You just live your life enjoying the company of those around you. Those are great days. What is wonderful is that you seem to know that you are special regardless of what other people say and do. Never forget that.
Your beauty will carry you through Eve. I think it is great that you will be openly answering people when they ask about your disease. That is powerful and brave of you. People don’t just understand what you go through when you think about vitiligo and when you walk through the halls wondering what people are thinking and when you find out what they are thinking when they speak meanly. And you have the power to help them understand and build a relationship based on honesty and understanding. You can do this Eve. And, there are people that will understand what you are going through and they will learn to appreciate you for you and you alone and you will love them Eve. They will love you too.
It is scary to have such visibly different skin. People can respond in such unkind ways. And they can respond in the most beautiful of ways Eve and with your honesty you can help them to be kind and understanding. You have a love of life and a sense of fairness. You know the pain of rejection and you know the fear of ridicule. You will know the joy of acceptance. You will know the joy of understanding. I have been in your shoes Eve.
Did you know there is a social network for people with Vitiligo? It is called vitiligofriends.org. It is a great place. I hope you join. You will find friends there. I live in California and I dont know many people with vitiligo either. Just a few days ago I met a women in Africa, in Nigeria that has vitiligo and is working to help people with vitiligo in Nigeria. Her name is Ogo. Her moto is “Self-acceptance is key.”
You are not alone Eve!
Keith
Hi eve my name is m I have had vitiligo since I was in 3rd grade so about 8 or 9 I am now also 13 years old, I was made fun of also, and I have also been bullied. My vitiligo is on my chin and is now bigger then my thumb, and is growing on my neck and my lip. People are curious, don’t let them bother you if some one makes fun of you why the hell not do the same thing back no one is perfect. Your gorgeous and don’t let anyone put you down. I would flip off anyone who said mean things about me, but now I see that was kind of wrong of me, but you have to protect yourself right? You’ve probably heard this before but suicide isn’t the answer trust me. My mom said that she had a friend with vitiligo and she got married and had kids and she is happy. Vitiligo made me shy, too shy, but I try my best to make friends and friends are your best support so is your family. Trust me your not alone a lot of people have this.
Hi M,
I think you are right. Even though we all have a different vitiligo, different sizes, different places and different ways of dealing with it, we have at one point written people off and decided that they just don’t matter. I think it is something we just have to go through even though it is not the healthiest way of dealing with ridicule and meanness. There are more positive ways as you suggest.
Vitiligo does breed shyness which can be destructive. Breaking through your own shell is so important and possible. It is possible for everyone I think.
Hope you keep on making friends,
Keith
Eve trust me bro u dont have it as worse as i do lil man..lol i have it around my eyes bro..and im kinda dark skinned..so it stikks out alot! ive been teased like everyone that has something different about them..sad thing is we live in a perception based world wich means ppl dont think n almost always judge the book by its cover..its hard getting used to but it makes us 100% mentally stronger then the normal people lol..n trust me lil man theres ppl in this world that can look right passed that! n that feels good knowin there are ppl out here like that..ive had vititligo since age 4..right now i perform music on stage doing shows, ive ALWAYS had good lookng girlfriends n honestley think ive had better ones then sum good lookn ppl i kno lol..u can chekk my musik out on youtube.com if u search ‘kkoon916’..its mostley rap n sum r&b..point is bro..its all howu carry urself..ur swagg..no! can take that away from you! if you walk around like your the shit then everyone will think that to..trust me bro..i study psychology and about humans and thier brains n stuff n its SCIENTIFICALY PROVEN if you believe then u can get others to believe!! check out my videos bro i have half naked girls writing my name on their bodies for fan signs of my music lol..sometimes i sit back n think dam is this realy me? or do i realy have this? reality is yes it is n yes i do..its hard to face ppl sometimes but you cant hold back from life just like you said “if I end my life, all my hopes and dreams would be drained.”!! I love how you think like that especialy at your age man! thats important n i kno definitly with that attitdue your self esteem n confidence will sky rokket bro!!! neways ive aktully never in my life wrote to ne1 bout our conditions so i hope it helps n if you have ne more kwestions or thots or jus want to talk then be sure to email me or something..i stay in
Sacramento California!! emails [email protected]..take kare lil man! much love!
Hey I’ve got vitiligo too and I know how it feels. People stare and asks you constantly what it is. When you tell them ‘it’s vitiligo’ they look at you funny. Don’t think about suicide I know it’s hard. I have to deal with it everyday but there are other ways to live a happy life rather than to look perfect. If you are smart you can still get good jobs and honestly- it gives you a good conversation starter for when you are taking to people and if you’re like me, I make up stupid stories about it to take the piss out of people ?
Hi Keith, I have read through a few of your blog posts now and admire you for being able to do this. I am almost 30 and have had vitiligo for just over 3 years now. All of my patches that I am aware of are on my face and the hairs on part of one of my eyebrows and almost half of my mustache are white. Most people notice the white hairs on my eyebrow straight away and towards the end of the day or if i dont shave it looks like i have half a mustache 😀
I probably think about my viltiligo every day and some times it make me feel insecure and other times I couldn’t care less. If I just had it on other parts of my body i don’t think i would care at all as i have had some form of excema in some places since I was 19 and am totally used to patches of some form. I do worry sometimes about girls I like noticing it but i have had girlfriends since having it and it seems that some girls are less shallow than i am 😀
It was certainly interesting reading you observations about diet. My sister (who does not have vitiligo) has been tested and told she shouldn’t eat gluten – I have no idea if food intolerances can be genetic but you have inspired me to experiment and look into this further.
A couple of observations, some of your commentors have noted that their vitiligo was brought on by a period of intense (relationship related?) stress. This was also the case with me. My first patch (half my mustache going white) appeared just after a particularly intense and stressful period in a relationship with a girl I was engaged to. The rest of it appeared in the weeks after she broke it off with me a few months before our wedding date. To be honest though I’d rather have the vitiligo than be with her lol (didn’t recognise that at the time though – most depressing and stressful period of my life coming to terms with that loss and the vitiligo both at once – didn’t sleep more than three hours in a night for about 7 weeks and lost over 30 pounds).
I think overall my mental state is fairly good – I have come to terms with my vitiligo in its current state and, like everyone, i have bad days but I believe life is a gift and i don’t want to waste it feeling sorry for myself. At the beginning of this reply i said i admire you. I admire you because I think you have gone a step further than me. I am ok most of the time because I don’t dwell on it and don’t let it become too important for me. I don’t think I would find it so easy if I was stepping out to others in the way that you are and regularly reflecting on my condition as you do on this blog. Having said that I think I seem to be coping with this condition pretty well overall and maybe have something to offer others so if you do get a forum up and running maybe i would occasionally post some encouragement.
Thanks for encouraging me by sharing your journey.
Hi Rob,
I’m constantly on the lookout for someone else in the same situation as myself, I too have half a white moustache which you can see in this snap: http://sphotos-d.ak.fbcdn.net/hphotos-ak-ash3/45857_1540566924909_4470361_n.jpg
It can be a real nightmare sometimes and especially if your like me and like to sport a thick beard, not a lot you can do though apart from keep your chin up and be happy.
MacI
p.s if we ever cross each others paths we should go for a beer.
Thanks for your blog about vitiligo… I am a woman with it on her face, hands, wrist and other areas of my body. The only time I am bothered by it on my face is when I am looking in the mirror… otherwise I forget I have it. I know people “wonder” what is wrong with my face when they see me… and I get a little embarrassed… then I think “Oh well… it’s not like anything is WRONG with me…they are just curious is all.”
EVE -> don’t EVER let anyone bring you down. Your beauty will shine through for sure. Kids can be cruel especially when they don’t understand something… I joke with people about my “spots” and then they seem to be able to relax themselves.
🙂
Hi thanx 4 this my name is k, i had it since i was 5, i am dark skined and now 24, its covered half my face,neck, hands and legs i also didnt feel insecure until 13, then i started noticing stares, whispers and small kids pointing, no matter what me and my family did it stayed in my body like a welcomed roommate, i kept my friends from childhood cause they made me feel normal my college friends wil be in some state of staring so most of those friendships were generic. When i finaly turned 22 i moved out of the home i shared with my grandma and cousin but 6 months seemed to much for me , i wanted ppl who looked at the real me not my skin, at one stage i quit my job ingnored my friends and family, and only left the house to buy cigs, my grandma told me to thank my lucky stars that im diffrent it means god took extra on me (that was a granny thing to say) but she was right i am diffrent it only means i wont be over looked and my inner beauty shines out in everything i touch, and say, i now have a great job im godmother to my friends baby, going out more meeting new people and answering all their questions. I hope one day people learn how appreciate differences but until then, if you have suffered as much as i have do what ever it takes to make you happy.
Hey K,
I think your story is one we all have experienced in one way or another. We all have had to explain what this disease is and how it works and then help someone move past it. Sometimes it is others that help us move past our own insecurities and enjoy life. It is hard sometimes to remember that we are more than a skin tone. I feel like being an adult and dealing with adults is easier than being a kid, though I never had vitiligo as a kid so I can’t say for sure. But it does seem from the comments I get there that kids can be mean. It is up to us to help them understand that we are not so different and the differences that are real make for dynamic relationships. It is a good thing.
Hope to hear from you soon,
Keith
Hello. My name is Lawrence. I’m 12, and I have many patches of vitiligo all around my body. The more noticeable patches are on my face around my eyes. I get many people making fun of me, telling me that I wear fake tan, and I have patchy skin.
Eve- Don’t ever let people get you down. I know how it feels to have people ask questions, and make you feel awkward. It’s so brave of you to share what you have said with us. You seem to be an awfully nice person, whom anyone would be thrilled to be friends with, no matter what you look like on the outside. And I have come to tell myself that these patches I have all around me make me, me. If you want to talk any further, I’d be more than happy. [email protected]
Hey Lawrence,
Thanks so much for sharing and encouraging Eve here. It is nice to see people from around the world reach out and help each other out.
Best,
Keith
Keith, I want to thank you for this blog. It’s helped lighten my load. I am 40 years old and have officially been diagnosed with vitiligo a few months back. I’ve had a quarter-sized white spot on my neck for as long as I can remember and was never really bothered about it. I just thought that it was somewhat akin to a reverse birth mark. Not unlike Rob above, the white spots really proliferated following a period of intense relationship and job stress. In the span of a few weeks, I was dealing with the loss of my partner of 15 years, passing evaluations for a demanding job, and dealing with anxiety created by these new spots on my face, forearms, hands, and chest. When I was told that there was no cure for this disease, I was plunged into deep despair. Although I never seriously considered suicide, I have had an extremely difficult time finding any upside to the situation. Although I appear to cope with it well while at work, I find myself heading straight home after work and I avoid social contact as much as possible. I’ve always been on the private and shy side, but now those tendencies are bordering on the pathological. I never considered myself particularly image-conscious, certainly not vain, until these spots showed up. I never realized how much of my perceived self-worth was tied to my appearance until now.
I have spent a large chunk of my working life in the pharmaceutical field and, like yourself, am highly skeptical of the treatments for this condition. It really is a question of picking your poison. I really do think you’ve made the right choice and it is the path I am going to follow as well.
Anyway, I just wanted to thank you and all those who posted here to allow me to share this burden with all of you. Although I am still seriously struggling with this new condition, I am determined to find a way through it. Thank you for having the courage to out yourself like this. It’s contagious.
I’m really interested in the gluten-free diet. I’ll look into it and definitely let you know how it all works out. The fact that you are already feeling more energized is reason enough to try.
Do you know where I can find reliable information on vitiligo? There are plenty of hits in a google search, but the majority of the websites feel like they are trying to sell snake oil
Warmest regards,
Patrick
Hey Patrick,
Thanks for sharing your own story. I always feel a bit better when I hear about someone else struggling through having vitiligo. The lack of a cure is discouraging.
You are right that so much of our own self worth seems to be tied to the idea that we look normal. And while it is frustrating is is understandable. We all judge other people by their looks and it is so unfortunate. It is limiting.
My goal is to be the healthiest version of me that I can be. Will that get rid of my vitiligo? I don’t know. But I will be healthier. I can tell you that certain cravings do go away once you adjust your diet for a bit. Now, I am not only gluten-free but also mainly vegan. I indulge in some things rarely and it has expanded my palate and increased my enjoyment of food. I have a thoughtful relationship to food. This is healthy for me, mentally and physically. I have seen some repigmentation on my hands but continue to notice depigmentation on my face.
This last weekend I was feeling a bit more vulnerable than usual and my own insecurities cropped up in a way I had not experienced in some time. It is hard. It does get easier. You notice people with the disease and somehow this is always encouraging. Seeing people living, being in the world with this disease is encouraging. It encourages me to be in the world more. It is a great place to be you know?
Hope you continue to find your strengths through your experiences. Would love to hear from you from time to time. Feel free to email or call. Both are available on this website.
Best,
Keith
Patrick, as a an almost 36yo myself, who got this condition probably about 2 years ago now, I am really happy to read your comments. Like you I can’t believe how much I have tied self worth to my looks. I have a bit on my finger tips but the main bit is on my face. I’m Caucasian but it’s still annoying. My partner is over listening to it, and she honestly doesn’t care about it.. Which is cool, but in my heart (ie because of how shallow I am at heart) I don’t believe her 100%.
On one hand ,the bit around looks worse, but in the other hand, a big part in my genome filled in almost completely.
I am running out of energy to deal with it. Sick of turning to talk to people..
The crazy bit, before I realised I had it, it didn’t affect my life at all!
I look back at photos, where obviously it was there but I didn’t know, and I had no psychological aspect to it.. I almost wish I just didn’t know I had it.
I’m going to try reducing my sugar intake, taking a few suggested vitamins and then exercising, if nothing else I will get back into good shape..
Life is hard, but also beautiful people!
Hi all reading your comments made me feel relaxed yet i dunno for how long. four days ago i have noticed a small lighter skin patch on my nose and the doctor said to me today that this isnt vitiligo however when i came back home i decied to have a look on my back and was surprised by a small white patch in the middle of my back ???!!??! is it the common way how vitiligo start according to your experience with it ? thank you
Hi Keith,
Thank you for this website I am a 22yr old with Vitiligo on my eye lids chin and patches all over my body, I developed this when I was 2 years old.I then got Diabetes when I was 8 yrs Old I wonder if it is connected in some way? I don’t think I can ever except what I have but I’m searching for cures online there seems to be a lot of ointments and creams that help but its just about testing them what can go wrong!
This site has been very helpful and supportive when i read all the comments 🙂
Thanks
Hey Deborah,
Really appreciate you coming by and leaving a comment. This site really is all about the comments. Hearing about other people and their struggles helps to we dont see ourselves as going it alone.
I do think you can accept yourself. I accept myself and the disorder. I dont like it but I do accept it. Its possible!
Thank you,
Keith
Hi my name is Erin and I am currently 18, when I was about 16 ive.noticed white spots on my thighs , n small pigments on my hands , I have one small dot on my chest, I have 4 dots on my lower right leg, and genetal areas, im scared if it gets on my face is it possible that it wont get on my face.?
Hi Keith,
I just came across your site, haven’t quite had the chance to read through all the comments, etc but thought I’d share my own vitiligo with you, I have a cracking photo of where I’m affected here: http://sphotos-d.ak.fbcdn.net/hphotos-ak-ash3/45857_1540566924909_4470361_n.jpg
BI have vitiligo on half of my upper lip, it’s almost exactly symmetrical so when I have a beard which I always have my moustache is half white & half black.
Lot’s of people comment on it daily as it’s so noticeable, most people think that I’ve bleached it myself due to the symmetry. I personally find it funny when people comment on it and often tell them long tales about how I do it deliberately to gain reactions, as it’s a trendy thing in the area I live in like skinny jeans, that I’m in a band and that’s our thing, that I did it as a dare and am now addicted to doing it. It’s amazing how many people fall for these tales.
It’s not always a joke though as I do get frustrated by people gawking at me, asking me about it, It irritates me that people feel so comfortable to confront me over how it came about, I mean if I only had one eye I’m sure people wouldn’t come up to me in the supermarket and ask why I only had one eye! People can be very ignorant & naive but I try not to allow them to get to me as much as possible.
My pet hate is high school kids who I do feel anxious around as I know that they enjoy having a laugh and joke in their circles about my half white mustache , little B**stards! It’s not really their fault though bu I do try and avoid being around them if possible.
I suppose though I always have the choice of shaving which I do sometimes when I’m on holiday in different countries to avoid drawing attention to myself, other than that I’m perfectly happy to wear my beard and show the world the thing that makes me that bit more interesting, my VITALIGO.
MacI
I think your really very sexy.
Sincerely,
Jane
Im 23 and Vitiligo started Februari 2014 after getting steroids injections in my wrist by the docter because of a injury. It started where the needle went in my wrist but it totally dissapeared on my wrist and the spot was really big (5 by 5 centimeters) 1 month after the dissapearance a small patch has come back to my upper right arm instead of my wrist on my right arm. It’s on my head aswell, and it’s also starting on my chin. My skincolor is light brown but its still very notecable. I also have it on my feets