Juliette Sentis and her vitiligovspots
Around my tenth birthday, I discovered a little white spot on my knee. My father is a dermatologist so it was easy to see that I have vitiligo. Vitiligo is an autoimmune disorder, which means the immune system becomes overactive and destroys the pigment-making cells with as result makes me lose pigment. It can be everywhere, I even have white eyelashes. I probably have a combination of acrofacial and non-segmented vitiligo. Acrofacial vitiligo is mostly on joints and other bony places on the body, in my case the face and hands. It’s also non-segmented; I have it on both my hands, both sides of my face and knees. To hide the white spots I started to experiment with make-up, mostly in the summer when it was the most visible. Talking about it was difficult because I had other problems during High School like being bullied. When I was younger I was small and very skinny, this changed in the third year of High School. I became pretty tall, roughly 1.79 cm. It looked as if I was even skinnier than before and people called me ‘anorexia’ girl. This in combination with vitiligo resulted in being called names, for example being compared with a skeleton. During my photography education I came into contact with other people that didn’t have an easy time at high school, and I felt more comfortable to talk about my past. I processed my past by using photography, these were quite intense photos and showed loneliness. Nevertheless most of the insecurity I still keep to myself.
After my second year, I had a sort of ‘no man’s land’ where I did not really know what I wanted to do with my life. I really loved photography but my general development and knowledge was missing, so I decided to go to college again. The study I started was less creative and practical. I also had a boyfriend, who did not accept my creative side and I suppressed that as a result. Last summer the relationship ended after 3 years and after that I began to flourish again. With the help of friends and my own determination to get over it, I started to live again. My life motto is that ‘everything happens for a reason’, and that you need to focus on the positive things in life. I started to do photography again and piece-by-piece, I became the person I was supposed to be: happy, a bit stubborn and most of all a tad crazy..
Photography was an outlet for me, a kind of therapy to express stuff I could not say out loud. It still is. I actually realised that, except close friends, most people do not know I have vitiligo. It is not strange because on all the self portraits I have it is not visible I have vitiligo. During my Minor, I made close-ups of my vitiligo spots for an assignment but here the self-portrait was missing. At the end of last summer I decided to change that and made a photo series of self-portraits where my spots are clearly visible. To my surprise, I received a lot of positive reactions on the photos. There are a lot of Facebook-groups for people with vitiligo. I have uploaded a photo of my hand in the group with the caption: ‘be happy all of your senses work and that you are healthy, enjoy life and live it. Go outside and do not hide your vitiligo spots’. It is to create more confidence for people who are insecure about their spots. Unfortunately, there are always people who comment like ‘I still hate them’, ‘I think they are ugly’. Yes well, for me it was also hard to accept them but I did not spread negativity. That does not help the people who actually do try to create more confidence for others.
Most of the insecurity about vitiligo spots is self-created. Not only with vitiligo spots but also with a lot of features you might be insecure about. You focus on them so logically, you see a bigger problem than they actually are. I noticed this when a boy approached me on Facebook. He thought it was pretty cool I posed for the camera even though I have vitiligo spots. He has the spots like me around his eyes and sometimes gets questions like ‘do you wear make-up?’. For me with the positive mindset it is now easy to react like ‘no I don’t need make-up, do you?’. When you accept yourself and feel confident, your friends will also accept you for who you are. If you just explain your vitiligo spots they will accept it and even think they are cool. It is a shame that people with vitiligo try to hide their spots. From my own experience I know how insecure you can get from vitiligo. Especially for kids, it is hard. I am planning on trying to get more awareness for vitiligo in the Netherlands and help kids learn to accept vitiligo. I have gone a long way in accepting it and it feels so good to be yourself – with vitiligo. Of course it is hard when you have your spots prominent on your face. But there is no such thing as perfection, everyone has something.
I like it that there are diverse people with different colours; otherwise the world would be a boring place.
Oiginal text: Jeanine Hendriks Translation: Ashley Glover and Juliette Sentis Images+story: Juliette Sentis