What makes having vitiligo hard?
This is, as is must be, different for each of us and I am so curious about what each of you has to say about this.
What are the things that you struggle with? What frightens you?
Here are some of my own answers to these questions:
I am scared what people will think of me when they notice I have a skin disorder.
I am concerned that people may think I look gross and non-normal.
It’s not knowing what will happen next with your vitiligo? Will it spread to your face? Will it spread to your arms?
Will I ever find someone that finds me attractive?
Will I feel attractive?
We all have struggles.
What are yours?
I am very curious to know. Please leave a comment here on the blog or on facebook.
All of the above…Sometimes,some of the points are more pronounced,than others. I guess because its incurable-yet being told to just accept it-that’s extremely difficult.
– That I will never enjoy the sun again. My vitiligo is >75% of my skin now, but when I go out in the sun the pigment i do have left becomes more pronounced….not everywhere, but in patches here and there…which makes it look awful. I got a bad sunburn last spring…when most people wouldn’t burn because the sun wasn’t strong enough. The result was awful. After the swelling and redness dissipated (days later), the blotches on my hands and arms made me look like an old lady with liver age spots. It took months to go away and while my hands had been virtually completely white before, I still have remnants of this regimentation…like age spots that won’t go away even though I’m not old enough. So the fear of the sun now is even more intense…never mind for the blotchiness that happens, but more so for the sunburn (sunscreen isn’t enough).
– that I will never be able to wear a bikini or short sleeves or shorts again. See above. It’s been about 15 years…not to brag but I have a good body for it, but the skin makes people stare. That’s why the last time was 15 years ago…on a vacation where I thought since people didn’t know me and I would never see them again, who cared what they thought? Well, the stares were too much to take. No bathing suits since!
– that the re pigmentation on my face will return in the sun. See first point above. If I am caught outside without a hat, I panic. I know that most people will get color, but I will get areas of repigment that make the vitiligo more pronounced.
I feel like a skin cancer survivor…always hats, sunglasses, long sleeves, long pants. The problem is I am on the verge of a new job opportunity that will take me either to the desert or the west coast…more sun exposure.
I guess the good news is that because I have had to avoid the sun, I don’t have nearly the wrinkles and sun damage other people my age do. It’s just disturbing when I would absolutely love to go to the beach or hiking and just can’t without always being afraid of what I am going to look like the next day unless I am covered from head to toe…and even then I would be sweltering and not enjoying myself.
I try not to make assumptions or take things personally when it comes to my skin. But it is a battle to remind myself not to assume people judge me. I worry about my future when I need to stay here & now. Mostly I worry financially that people won’t hire me on the basis of my hands. I don’t know I think we are perfect and we all have our own personally stories, my issues are I worry and I’m insecure.
Hello,
I really am enjoying this site. The hardest part of Vitiligo for me, is that there is the fear of the unknown. I used to be a hand model, and had always found comfort in having nice hands. Well, now they are all blotchy. I used to wear no make up outside of date nights, now I rarely go without it due to the various shades of skin on my face.
I live in Texas and have four children ages 1, 2, 6, and 11. There is no way for me to avoid the sun without robbing them of the childhood they deserve. I do take them to the park, pool, zoo, etc..I wear gloves driving, and UV clothing everywhere I go. My two year old loves gloves and hats. Most people think it’s adorable that she’s such a “girly girl.” I know it’s best for her skin. However, feel bad that this is the influence of seeing me with a hat and gloves all the time. I’m thankful that my children only know me with Vitiligo so don’t ask questions. My husband is very supportive, and doesn’t like the side affects of the creams (severe headaches), so we as a family follow a gluten free diet. I’m hopeful that at some point, I will start to repigment. For now, I’m thankful that the speading has slowed down and that I haven’t let it stop me from living my life or being and active mom/wife/person. Only my closest friends know I even have it. Most people, just assume I’m very conservative/bohemian because of my dress. Little do they know, 4 years ago, I was wearing a bikini at the beach, got married in a strapless dress, and lived for sandals.
It’s been almost a year I have vitiligo.. Don’t know what to do just feels like staying away from everyone…
I just noticed I had it its on my back and badly starting on my chest and I am a decently good looking person I’m afraid that one day I won’t be anymore and I miss the sun. 🙁
It makes me feel not normal. I am a very social person, but if I get invited to things that I need to wear shorts or something, I just say that my parents said I’m not allowed to go or some lame excuse like that. I miss out on a lot of things that I want to do. I mean, I don’t feel attractive, I feel like when people think of me, they think about my vitiligo.. also, I want to be equal to people, I don’t want people to feel bad for me y’know!? It makes me really angry. But I guess as long as I’m a good person I will be fine. :/
Hi,
I have been living with vitiligo for 20+ yrs. I have to say when I was in my later teens it did affect me very much. Later on as it spread I stope wearing shorts and swim suits. But I felt it made me stronger, I had good friends around me that understood me. People that made fun of me or stared I could care less (more or less). To me they honestly didn’t understand what was wrong, for some they asked and I explained and that was fine, whether they felt sorry or else, was there choice. I found that a body suite that covers from neck to ankle and arms, not the rubber ones but a cloth one, from a scuba store work wounders for swimming, it protected me. Plus my husband says it is kind of sexy, (think of Number 7 on Star Trek Voyager)maybe not quite her body LoL, but it works you can still enjoy the sun.
Wearing light gauze material it pretty good, but still made need some sun block.
I have it but for the most part it doesn’t stop me I am still me and act like I am like everyone else just a bit more individuality.
The hardest part for me has been the fear of the unknown, whether it will spread acroos my whole body or not, and when,etc. My most cripling fear is that I am young,I’m my early 20s and I have vitiligo in my private part so I worry if I will ever feel comfortable enough for a partner to see how I look down there, will I find a life partner who will be able to look past it,etc. It hasn’t been easy coping and possibly hurting someone by not letting them that close to ne when they like me,for fear of not wanting them to one day see my privates
Since I discovered I had vitiligo, I changed things in my life, bits by bits, it’s an ongoing process.
I’m letting go of everything I find toxic in my life, at least I try too.
This includes habits and people.
I think the vitiligo is like my subconscient mind speaking to me, telling me : some things in our life are very wrong, we must change them.
I’m afraid I’m might be wrong … it’s difficult when I realise : this guy who is supposed to be a good friend is bringing me down, I have to let go of him.
I’m afraid I’m might end-up very lonely, but then, I sometimes meet new people, nicer people.
http://youtu.be/F9Nh84lfvW0
I have had vitiligo since early childhood (around 6). That was 56 years ago and at that time, you never saw anyone else with the condition. I was dark skinned so it was very obvious and extremely difficult growing up. Even typing this now brings tears to my eyes. We were forced to go swimming and have communal showers; these were the worst times. My teacher also shouted at me one day, in front of the whole class, saying I hadn’t washed my neck. Needless to say, this was an awful experience, to the point where it affected my whole personality. At that time I was top of the class but I immediately began to struggle with my lessons. I lost all confidence, still don’t have any, and I worry constantly about what others think of me in every situation!
Who cares what other people think…….
It’s more about what you think about yourself that matters.
Feel strong and you will be…..
Feel beautiful and you will be…………
Anyone who try’s to degrade you for a health issue you have no control over is not worth your precious time on this Earth.
They are only doing it to hide their own insecurities ………..
“Remember” There is more to you than meets the eye………
I have had vitiligo since I was ten, and that was about two years after I had decided that I wanted a career in filming media. I have many friends and have no shame, but I still get the stares and the constant questions.
I don’t really mind it but it makes me think just how worse it will be when pursuing my passion. I know it won’t be easy and I’m prepared for that, but lately I’ve just been feeling discouraged and depressed about the unfortunate hand I was dealt.
Any advice?
Hi my name is kushal iam 17 years old iam suffering from vitilago whem i was in 3 rd standard the patches cover all my legs and hands and chest i have little on face but i cant wear shorts or half shirts mt frnds always ask to wear half shirt in college but i ignore i dont like to say whts the reason behind it also.. i fell sometimes to die but i got the best parents who always encourage me. And few child hood frndz who dont treat me as a srperate some ppl keeps on starring @ me i dont like tht well leave god has given me this disorder well i have to face it..
Hello,
I understand it is mostly women here posting. But reading through I thought I might be the first man to post.
I didn’t know anything about vitiligo until my wife started to have these patches on her skin.
She’s had it for about a year now. Not too much, just some patches here and there. Nothing on her face yet, thank God for that.
I always try to support her as much as possible, but sometimes it is hard to understand what is on her head. I want her to know that for me it doesn’t matter if she has those spots or even if they spread all over her body, even her face, or whatever. I just want her to know that it is alright. So many people out there have this condition, but life goes on. I repeat it to her so many times. Although bringing up this topic makes her upset, but still, talking about it should make the pain less, right?
I sometimes wonder maybe it would be easier if I had it too, so that my wife can be how she used to be with me again.
She is so cautious and careful what she says, always concerned that I might come to love her less and find someone else. But it is so not true, and it is hard to explain her. She has these “people in her head” I call it that probably constantly tell her to be suspicious. She has become so jealous.
It is not just this skin condition which makes it hard, it is the mental effect.
Dear women with vitiligo, do not worry about it. So what if someone stares at you, or asks a question?! You should still continue being who you are. Try to get from life as much happiness as you can. Be wild, do crazy things, don’t push your loved ones away from yourselves.
Always imagine that there are people living a life with conditions worse than yours and be thankful for what you have.
Maybe your husbands, boyfriends, parents are feeling like I do too. Don’t push them away. Don’t distance yourselves from them. Life goes on, with or without vitiligo.
I am 16 and I have had vitiligo for just over a year. I have a few tiny patches and a patch of white hair. I hate looking at my face in the mirror and I can’t even tie my hair up in a ponytail because of my condition.
I don’t understand what we’ve donr tk deserve this. My self esteem doesn’t exist anymore and I feel like I will never feel the happiness I did before.
And I thought I was the sensible one. Thanks for setting me staihgrt.
Hello
I’ve had vitiligo since I was young . It started with a patch on my chin then proceeded to spread through out my body. I don’t like the way people stare at me . My face is almost all white . It’s hard to mix colors of make up to look even . Children will come out an ask what happen to me . That’s ok I don’t mind I consider them to be polite instead of just starring An not ask at all. I have grown to be kind of self confident about the vitiligo . No one in my family has it. That’s all I have to say for now