The hardest part about having vitiligo is that no one understands what a constant struggle it is to accept yourself. People think that just because you are physically okay that you should be emotionally okay as well and they dismiss your feelings. I feel crazy sometimes that I am having a hard time coping with my vit because no one around me understands what I'm going through. Just when I start to come to terms with it I get 10 new spots, and the rollercoaster begins again. I feel like no one understands me, and how this is something I deal with on a daily basis. I found this website a few weeks ago and it has really made me feel like I'm no longer alone. That there are other people who know what it is like. I have been working on a daily basis towards accepting myself and my vitiligo. Working on realizing that vitiligo doesn't define me. The person I am has nothing to do with how I look on the outside but how beautiful I am on the inside. I really have been making good progress towards acceptance.
Last week we had a volunteer day at work, and my boss said, "Wow Layla you are peeling all over you must have gotten a lot of sun." I was able to explain to her that day that no it wasn't peeling but vitligo. Then today I was with my boyfriend at his family's house. His 13 year old cousin asked me why my skin was white. She said did you get sunburned. I quickly said , "No I have a disease called vitilgo." But my boyfriend said "Yes it's sunburn." Of course then she got confused about what the turn answer was, and she said what is it really. And he said again it was sunburn. I adamently said, no I have a disease. Even more confused she turned to him and asked is it really sunburn and he just shrugged his shoulders and gave her an I don't know look.
I was extremely upset by this. I have been working so hard to accept myself and accept that vitiligo is apart of me. I feel like he should have supported me in explaining to her why my skin was white. We got in a huge argument about it, and he argued that the time to accept myself is not when explaining it to a 13 year who doesn't understand. I felt like he was ashamed of me and trying to make up excuses for how I look. I feel so confused. He told me I'm crazy for being upset about this but I really don't think I am.
Replies
Hi Layla! Im am sorry your going through this rollercoaster and it doesn't help that we are constantly reminded that we carry around our disease on the outside for all to see leaving us vulernable to what even complete strangers have to say. The hardest thing is to let go. I know it sounds easy but you will get there.
Just know that theres a community here that wont judge you and will help you through the tough days. Take one day at a time.
hi layla, you're not alone. we have one time of another felt, hurt, confused and embarrased of viti. i think that even when you finally accept it, you continue trying to cover it as much as you can. my family all tell me, they don't understand why i feel upset about viti, as its hardly noticeable (which definitely is). i know they that love me, just how i am, regardless of viti, but it also bothers me, that they want me to ignore it. since i found this site, i find i am more open talking about it or if someone ask me, i tell them exactly what it is. last week my 6 year old niece, ask me why my skin was white. her mother tried to tell her to stop asking me, and i told her not to. that it was ok. i told her i was loosing my ski n color, but that i still be the same. prior to that, , my 6 old grandaughter had told me i was her poke a dot grandmother, i felt a bit sad, but then i just asked her, if she would love me whether or not i was black, white, purple or green and she said yes she would no matter what, but she really wanted me to get my color back. we all go thru similar situations, just be brave and confront each one. few minutes ago, i heard the preacher Joyce Myer said, you must not depend on anyone loving you, you must love yourself first. please write to me, whenever you wish to chat.
Hi Martiza, It's amazing how much I can relate to what you have said. Even when I go through times of accepting it as a part of who I am I still want to cover it up. Maybe that means I haven't truly come to accept it though. Maybe true acceptance is when you no longer seek to cover it up. It's really hard for me as well because my dad tells my all the time it's not noticeable. Yet I know otherwise. I see it myself and other people ask about it. I know my dad loves me truly and unconditionally though so maybe that's why he says its unnoticeable, because it really is unnoticeable to him. I think a big part of my venerability and inability to accept it is due to being able to talk about and openly express my feelings, good or bad. I'm glad that I have found this website now that I am able to do so.
Layla, I used to feel the same way about people saying that they hardly noticed it. What I believe happens is that initially when someone doesn't know you, they notice it, but as they become accustomed to seeing the inside you, the outside fades to the back. I know this really happens because I have a experienced it with other people that have things that set them apart. My friend was born with a hand that did not develop correctly and the fingers are not well formed. I initially noticed it when I first met him, but after getting to know him, I didn't think twice about it. In fact, it took me a moment just now to recall who it was that I knew with something different about him. When I think of my friend, I think of his personality not his hand. It is much the same with my own vitiligo, I actually don't give it much thought unless someone asks me about it or I am going to be out in the sun for a while and I need to use sunblock. My vitiligo has helped me because people that are worth having as friends with be my friend for the inside me, not outside.
Thank you all so much for your great advice and stories. It helps so much to know that other people have similar feelings and that I'm not alone.
I think you have a right to be upset with your boyfriend. It sounds like he is not comfortable with your Vitiligo which could be an inward problem with his own self-esteem. A 13 year old definitely can understand what it is. In fact, my 5 year old niece understands. I just say, "There is something wrong with my body that makes me skin turn white, but it's okay because I'm not sick and you can't catch it. I've just got special skin". When I told my elementary kids about it I let them touch it and ask all kinds of questions. After that, it was a total non-issue. Kids are FAR more accepting of differences than adults.
Hello Layla and welcome to Vitiligo Friends. I understand what you are going through and it was hard for me many times. At my first job a sales person approached me and said "wow, your suntan is really peeling". Of course at that time I was really vulnerable and I got up and went to the break room and cried so hard. Then when I cried my makeup came off and my white eyes became visible....I stuffed down so many tears back then. I could go on and on....but that was many years ago. In my 50's I became totally depigmented by natural progression and it has become so much easier. But I experienced so much frustration, like you. I am so happy you found Vitiligo Friends who are here to listen, understand and support you. I liked Nadika's advice. We are here for you.
Peace and love,
Patty
I agree with Patricia, it is hard to have others understand us and our journey and at times things seem like they will not get better, but they do. I have also lost all of my pigment, but I used to be a dark olive complexion and the vitiligo stood out. Often kids would tease me and it was so tough to get through as an 8 year old girl. As an adult I was still 50/50 with my skin color being brown and white. I thought no one would ever find me attractive etc, but that was not true at all. I dated and I got married and had a child. It sounds like your boyfriend is trying to help you not hurt your feelings, but maybe he just isn't doing it in a way that agrees with you. When things calm down tell him how you feel. Tell him that even though his cousin is only 13 she is quite capable of understanding the truth and you would like to be able to explain what vitiligo is so that his cousin can be informed and when and if she sees someone else with vitiligo, she will understand what it is. People are going to stare and ask questions about anything on anyone that is different. That is human nature. What matters is how we react to others. We have to empower ourselves to eradicate ignorance from a place of peace as we of all people don't need to be more stressed out.
love and light,
Vanessa
To clear any doubt in your mind - ask your boyfriend what he thinks about your vitiligo. When explaining vitiligo to a non-vit - just say that due to a melanin deficiency your skin has turned lighter. The word "disease" is a little too strong - in my opinion - even when explaining to an adult.