How to learn to live "other": My body is covered with birthmarks
I was born "other": my body is littered with birthmarks of varying size, dark and light brown. I can outdo more than 95% of people on the planet by the number of birthmarks - I don’t even have a hundred of them, but probably about a thousand. I would love to count them, but when I was six, my mother and I began to stray from the account. My name is Julianna, and I am a carrier of a rare skin disease (I prefer to call it a feature) Congenital Melanocytic Nevus - a congenital melanocytic nevus. The word "innate" means that I was born that way. "Melanocytic" means "associated with melanin" - the pigment responsible for skin color. Melanin is usually distributed evenly on the skin. The centers of accumulation of melanocytes - cells that produce melanin - are called nevi, or, more simply, birthmarks or moles.
Birthmarks are different, I have a rare look - a giant pigmented nevus, congenital skin pathology. Such a nevus occupies a significant surface of the skin (more than 20 centimeters) and grows with the child. It would seem, what could be dangerous in birthmarks, even in such numbers? But sunbathing, bumps, cuts, reduced immunity, illness - all this leads to melanoma, a malignant skin tumor. My stress causes new birthmarks to appear, and old ones bring discomfort. But this is not always the case: in fact, for the owners of this feature, everything proceeds differently.
So, the 90s, Ukraine, I am born - a child whose entire back is covered with something dark brown. All are shocked, doctors are at a loss: all that comes to their mind is to say that I will not live a couple of hours (which then turned into days and weeks). There were also speculations about lupus, the consequences of Chernobyl and other wild speculations. Unsuccessful attempts to find out what happened to me stretched out for seven years. I grew up a carefree child and did not understand that I was different from others. I was not embarrassed by the endless journeys with my mother all over Ukraine, according to various healers and councils of doctors and professors. What I just do not put on the skin! Not only are moles themselves causing discomfort (itching, sometimes there are other unpleasant feelings that are difficult to describe), we were advised to ointment, from which I itched so much that literally rubbed against the walls! I was six years old, but I remember this moment very well.
When I was seven years old, it was time for the internet. Mom was helped to find out what my illness is, what it's called, and that there are people like me — even adults, with families and healthy children. I think it was one of the most serious moments in my mom's life, because for the first time in seven years she found out that everything could be fine with her child and you could finally sleep at night without fear that by morning something might happen . It has come to our life that we can live with this condition and that we have a choice.
In France, skin transplants were performed (and are being carried out). First, we decided that we want and will do the operation. But I was already quite tall, and in order to transplant the skin on the entire surface of my back, it would take years of torment and stay in hospitals. At that time, more than twelve operations were predicted to me, and no guarantees were given: there was a risk of skin cancer, the operation could have failed and a scar and a hump could remain. Maybe, of course, everything would have gone well, but naturally, scars could not be avoided. I do not remember this situation well; I remember that my mother and I discussed this and I said that I feel well and do not want any operations. Mom, of course, was for the operation, she wanted and did everything to make me feel good. However, by the will of fate (and I don’t regret it a bit), they never did it to me.
At eight years old, I began to realize that I was still different from others. I remember that I was in a short sundress and suddenly noticed that people look askance at my legs, on which moles are quite noticeable. But due to my age, I was still childishly carefree, and my mother never focused on the fact that I was different or special. The first two classes of school I studied at home. I had a wonderful teacher and nanny who replaced my grandmother, I practically lived with her, because my mother worked a lot. But after the second class, it was decided to send me to a private school, where there were only 15 people in the classes. I loved school, I was very interested; I was lucky with my classmates, and I'm still close friends with some of them. But it was not without obzyvatelstv - "cow", "Dalmatians," "giraffe" ... Fortunately, I was an open and optimistic child, which allowed me to forget about what I heard in a couple of hours.
I think the transitional age is a turning point for many. I, under the influence of hormones, began to feel keenly that I was different in appearance, I was different so that in the street I turned around and boldly threw unflattering comments in my direction. Explosive mixture for a teenager. When I was 15 years old, in June, my friend and I went to the beach. Everything was fine, but when we came back, the grandmothers began to approach me and advise folk remedies for warts, someone noticed that at my age from chickenpox you can die, and the waiters did not hesitate to express their emotions with obscene words. I was indifferent to this (I didn’t hear or see anything new) until my girlfriend exclaimed: “Oh God, Julia! Walking with you is like a monkey!” It seems nothing like that - burst out, I understand everything. But all summer after that, if I went outside, then for about two hours, when it was getting dark. All days long I was lying on the couch and reading, the books were my refuge. I will not say that I was feeling bad - I was calm, I did not hurt myself and did not amuse others.
Whatever it was, I still loved and still love summer and sun, although sunbathing can seriously harm me if I overdo it. Since those 15 years I have been mentally preparing for the summer every year: on the one hand, I have been waiting for him very much, and on the other - I tried to build an impenetrable inner fortress. I wanted to wear shorts and open dresses at sea, but in June I always painfully pulled on jeans. I also had sundresses on the floor, but most of them had an open back, and I could only wear them with loose hair, which also caused discomfort. In those years, I did not go to the beach. My bathing suits were rather awkward, consisted of three parts (a one-piece swimsuit, over which I wore a top and shorts) or were sewn to order - I thought they were a spacesuit.
By the middle of the summer, I was liberating and still wearing something less closed, but I tried to walk like that only in the company of my friends, because I felt safer with them. I also endured public transport hard: in such a small space I was examined with interest - and I wanted to run. It so happened that I especially did not share my experiences with my mother. Yes, I had failures, I cried, and my mother tried to console me, but this rarely happened. I did not want to upset her with my experiences, because, in fact, everything was fine with me, I was not alone. I believe that my parents helped me a lot and taught me how to cope with my fears, feelings and waves of emotions.
Everything began to change when I got my first serious job. I was 17 years old, I was taught to photograph, given the equipment, and I was so immersed in the work that I paid little attention to the views of people around. I felt very busy and businesslike, who could not afford mood swings. After that, I worked for several years in different places - from the beauty salon to the yacht. I was very pleased to be abroad, it seemed to me that there they were a bit more loyal to the peculiarities of others. My feelings were confirmed when I traveled to Malaysia and the countries of the European Union. Most of all I remember one situation. Next to me on the street was a woman, as it turned out, an American. She looked at my legs for a few minutes, and then she turned to me: "Sorry, please, but I like your tattoo on my leg so much! What is this style?" - while showing my tattoo to her husband. For me it was a pleasant shock. Perhaps one of the reasons why I moved abroad was just these pleasant memories.
Now I live in Poland. For some reason in this country people pay me the most attention. Last summer, I was very worried about this, again I didn’t want to leave the house, in very hot weather I pulled on jeans, and if I was still in shorts on the street, I heard an exclamation of amazement and amazement. At some point I am very tired of this. I am tired of the reaction of others, of judging people, a grimace of disgust, as if I was sick of something infectious, and most importantly, I was tired of my attitude to all this and my depressive thoughts.
It was as if I saw myself from the side - a stooped, trying to hide from the whole being. And I realized that I need to do something about it, because in such fear you can spend your whole life. I tried to imagine myself in the place of people who see me for the first time, and I thought that, of course, that would have surprised me too. From time to time I find myself catching up on a person whom I consider beautiful or interesting, standing out from the crowd. He, in turn, may notice that I look at him, and also think that something is wrong with him. It is difficult to blame someone that he looks at a person if he hasn’t even heard of such a thing - although I would like them to react more modestly.
Trying to understand myself, in searching for answers to my own questions, I came to the conclusion that I would no longer hide, shy and walk, slouching under the weight of my own thoughts. Moreover, I realized that I was too fixated on my emotions and experiences - and after all, not only I have CMN, about 1 in 500 thousand of such people are born. Most of all due to the fact that you are "not so", you suffer in childhood and adolescence, after which it is difficult to recover. I realized that I didn’t want to sit back, because I can convey to a large number of people what CMN is, show the owners of this peculiarity that it is possible to live with it happily.
I started from the Facebook page and the photo shoot in an unusual format for me: we focused on those parts of the body that I had so diligently hid all my life. I wrote a little story about myself and started slowly displaying photos using the hashtags #bareyourbirthmark and #inmyskiniwin. To my surprise, the page quickly began to subscribe and make reposts, users actively commented on posts and wrote me private messages. The second step was the performance on the main Polish TV channel in the morning program. There I talked a little bit about the fact that there are people like me, and this is not at all scary. After that there was also a two-page article in Closer magazine, which is published in all German-speaking countries.
Subscribers to the page is becoming more and more. I like to share my experiences and experiences, it inspires me when parents write to me that it becomes easier for their children when they show them my page. I see from the photos that the guys start to walk in open clothes and freely swim in the pool in a regular swimsuit, and most importantly, they sincerely smile. I see people stop being embarrassed and ashamed of themselves and their bodies. And I am very happy that I help others to become at least a little more confident.
Now I am registered with Dr. Olga Bogomolets Institute of Dermatology and Cosmetology in Kiev. I also have a dermatologist in my city, which I need to see every six months. From time to time other dermatologists-oncologists appear in my life, but as one they all assert that it is better not to touch moles: any intervention can provoke cancer. Although quite recently I was with one doctor, who practically did not hide that he was surprised that I was still alive, and said that each of my moles is a “time bomb” and that they should be urgently deleted. It even amused me a little.
I can openly say that I have other complexes that I work on. It helps a little more effort, desire, sports and healthy eating. But I no longer feel shy about my skin, do not complex because of my moles. I accept myself for who I am. After all, if you do not accept yourself and do not love, then who will do it? I believe that only what we can cope with is given to us! I was born another. You were born by others. We are all different. Let's accept ourselves and those around us as we are. After all, even in the sun there are spots.
Photo: Julianna Youssef, yulianna.yussef / instagram.com
