Somebody called me ugly, but I didn't respond back.
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Why do people stare at my vitiligo?
Did you know that your skin is the biggest organ in the human body visible to everybody? Although, some teenage boys going through puberty, will try to tell you differently.
While everyone has skin, only a few people have vitiligo. Having white spots or blotches on your skin – the most visible sign of vitiligo – means you will be more or less noticeable to everyone who looks at you. People don’t look at you, they stare. This staring – real or imagined – is why people who have vitiligo can be self-conscious about their skin.
Vitiligo affects my skin, and this is my story of how it changed my life from an early age until now.
[Vitiligo is officially an autoimmune disease, but some people call it a skin condition. It merely means you don’t have pigmentation on the parts of your skin affected by vitiligo. The disease eats the pigment leaving a white spot or a blotch on your skin making you look like an albino, but only on some parts or your body.]
How I started having changes on the skin
My grandma had vitiligo, and so did my father. I knew how genetics worked from an early age, even before I went to school. My grandma had a lot of skin covered with white spots; father had only one spot on his chest, the size of a coin. Compared to his mother, he doesn’t have it so bad.
I got my first vitiligo spots when I was four, and after that, it spread quickly. Every time I fell and got a wound on my skin, it would heal, but the skin would turn white. It ended up visibly affecting my neck and hands, my back, legs, knees, elbows, feet, some on my torso, and between my legs. So, it wasn’t like the small amount my father has, mine was pretty much everywhere.
As a young child, I remember going to different dermatologists a lot, and my mother being worried a bit. But as far as I recall, I was unaware of vitiligo at that age. I was still in kindergarten and felt I was pretty much like any other kid.
The progression of vitiligo and the trip to the Dead Sea
When I was nine I went to the Dead Sea in Israel, with mother, of course, I was way too young to travel on my own. Because the Dead Sea is a natural depression – geologically, not psychologically – my mother said it had a filtering effect on the sun’s UV rays. And being exposed to Israeli sun was supposed to make people with all skin conditions better, not just vitiligo. Or something like that. I don’t remember exactly what she said, but it made sense to my nine-year-old self at the time.
So, we went and spent a month there. At that point, I was still unaware of how many vitiligo spots I actually had. I have a relatively light skin complexion, which meant my vitiligo wasn’t noticeable to me or others at that age. This was about to change.
The therapy for skin conditions in Israel includes being grilled under their “UV-less’ sun for four to five hours a day. The temperature was always higher than 40 degrees and would even reach 50 on some days. To me, at least, it was a hell on earth. And the devil gave me something to show for visiting it.
At the end of the month, I was darker than a sailor on the parts of my skin unaffected by vitiligo. But, on the rest of my body, all my vitiligo spots were suddenly so visible. This was the first time I became fully aware of it, and so did everybody else when I returned home.
Over the next few months, my vitiligo got better, as the pigmentation returned on some parts of my body, especially the legs and the knees. It got concealed quite nicely in those parts. So, my mother took me back the next year, and it helped me some more. Before visiting the Dead Sea, vitiligo covered around one-third of my body; after Israel that was cut in half and remains so to this day.
My mother didn’t want to go again after those two years because there was a war going on at that time in Israel. It also became more expensive for them. So, after a couple of years of not going my parents just gave up on ever going again. And they gave up because vitiligo wasn’t visible that much during the winter. It mainly appeared around April and lasted until October, matching the tan I would get during the summer months.
“At 21 I flirted with the idea of suicide. I didn't buy a gun, or a rope, or anything like that, but wanting to kill myself crossed my mind a couple of times. I was in a bad place mentally.”
Not all vitiligo is the same
When it comes to vitiligo, you need to have a couple of things in mind regarding the severity of the disease. Number one is the percentage of the skin affected, number two is your complexion, and number three is the positioning of the affected areas. It really isn’t easy to cope with it if you have it on your face for example, and if you are of a darker complexion. It’s really tough for some people, as the contrast can be pretty obvious from far away, and that’s not really a pleasant thing to live with.
I believe that Michael Jackson had vitiligo, and he was a black man. He used makeup to hide it at first, and then a glove. This isn’t confirmed, but I think he used the glove after he got vitiligo because it was a clever way to mask the white spots on his hand. After the vitiligo had spread I presume, he decided to kill all pigmentation in his body, because he didn’t want to live with the contrast. I can understand why.
Why I actually have it good, but it took time to realize this
I got lucky with vitiligo, a little bit. Although a lot of my skin is affected with vitiligo, it is mainly on the areas hidden by my clothes (except the neck and hands/fingers). And my complexion is favorable to a skin condition like this, so the vitiligo blends pretty nicely with the rest of my skin.
You can’t really tell that I’m any different during the autumn and winter months. Even in summer, when it’s most apparent, it’s not really that terrible. But I did not always think this way.
Vitiligo doesn’t hurt physically. It doesn’t itch or anything of that sort, but it is different. It is different from everybody else’s skin. You know that, and everybody else knows it too. You can’t hide it if you have it on your hands, which I do.
People stare at my vitiligo
Vitiligo is not that common. Growing up, and as a young adult, I don’t recall ever seeing anyone in the movies or on television with vitiligo.
This meant, on top of all the staring, I had to deal with a lot of uncomfortable and awkward questions. “What’s that?” Other kids would ask, and then I would explain it to them, over and over again. ‘’How did you get it? Can you treat it? Is it going to stay this way forever? Can I catch it from you?’’ I dreaded these questions and hated everybody that asked me them. I didn’t like being different.
This kind of stuff messes with your head and dealing with it takes time. A lot of time. At 21 I flirted with the idea of suicide. I didn’t buy a gun, or a rope, or anything like that, but wanting to kill myself crossed my mind a couple of times. I was in a bad place mentally.
First changes in my behavior
Like I said before, I wasn’t consciously aware of the vitiligo before I went to Israel. After that, it got pretty noticeable. Within a few months or so I started to develop my first crush on a girl. This was the first time I thought to myself; ”I am different than other boys, she won’t like me.” I can honestly say, this was the first-time vitiligo actually affected my behavior and got me thinking about my skin condition.
My Israel super-tan didn’t last for long (thankfully), and it got back to normal pretty soon. But, it didn’t matter, my classmates and friends knew that I had vitiligo. Nobody thought much of it, of course; I am a natural extrovert. I had good grades and had no trouble making friends. But as the teenage years approached, I started to be more aware of it in the back of my mind.
Somebody called me ugly, but I didn’t respond back. A girl that I liked, liked me back; but I didn’t make a move. I was confined by the thought that I was not good enough to have anything with a girl. And this was reflected in my behavior and the way I thought about myself; although at that time it only meant I was missing some kisses at the school dance, nothing major for a boy on the cusp of puberty. I was still happily playing sports and video games with my friends and didn’t have that much interest in girls anyway.
Lack of confidence in high school
When I got to high school, the same process occurred, but on a larger scale. I had good grades, I got along with everybody and had friends. But I avoided going out with my peers. They were going out to bars and clubs, where romantic involvements were more likely to happen. Instead, I continued playing my video games. Only this time; and I was around 16, I wasn’t happy anymore. Deep inside I knew I wanted to be out with everybody; drinking, dancing and kissing girls.
Everybody thought I was fun, but kind of lame because I stayed at home. Some even suspected I was gay because my behavior never showed any intent towards the opposite sex. I am a decent looking guy. I am intelligent, and I can really talk and get along with everybody when it comes to interacting socially. But when it came to all this boy/girl sex stuff, I felt like I was trapped, confined to be alone because of vitiligo.
Losing my confidence with vitiligo
The confidence I had in school with teachers and friends was completely gone when I ended up alone with a girl. There were a couple of instances, and several girls were interested in me, but I chickened out every time. And because this area of my life was non-existence, I started losing my confidence in being with big groups of people and in social settings outside of school. I would sit back and let people with ”normal skin” get more attention than me. I didn’t really push anything with girls, I got pushed around instead, and it sucked. I felt awkward and uncomfortable.
Little did I know that this was just the beginning of my psychological problems. Because of my vitiligo, I became estranged from my friends and parents, trapped inside my head, only my bad thoughts for company. How my life got to the point of me contemplating suicide, and how I eventually resolved my problems, is an entirely different story.
Read more: Did vitiligo mean nobody would ever love me?
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