I was 4 when I had my first ever Vitiligo patch on my right leg. A tiny white patch on my brown leg, right in the middle between the knee and the ankle.  Little did I know what it was, or what impact it is going to have on me. My parents and my Grandfather, they knew though. They could envisage what it will bring for me in the future and believe me, they were not happy since they knew it is not going to bring anything positive. 

My patches grew with me, both in size and in amount. As far as I can remember, the next 3 years, when I was between 4-7 years old, I had patches on eyes, on my elbows, on my feet and my back. All these were the very typical locations on the body for a vitiligo patient. Fortunately and somehow, by the end of my 7th life year, the patches on my eyes and elbows disappeared. I was 8 years old now and was going to 4th standard. By this time, I was pretty much aware of my very auto-immune condition. Like all schools in India, we had a uniform to wear for school. It was a light blue color blouse, with dark blue skirt and a red tie along with socks with my school’s name written on it and black shoes. I must agree, it was an amazingly elegant and lovely uniform, but I did not really enjoy wearing it. Unlike a lot of you, I loved going to school. Everyday, 6 hours a day for 5 days a week. I would attend full day of school even when I was sick. Although one shouldn’t do that as you can make other kids sick. I still did it though. 

What I did not like very much was the summer. You want to know the reason? The temperature it brought and the clothes that one had to wear in that high temperature, including my school uniform. Shorts, skirts, short-skirts, half pants, sleeve-less tops, or frocks were not my best friends. I mean, I loved to wear them, but the very reason that everyone will see my patches in any kind of short dress literally traumatized me. This trauma did not happen from one day to the other. I was not born with it. My mind did not even know what trauma is at such a small age. It had a reason, a well established reason.

For a long time I believed, at least I wanted to believe that the reason was people looking at me. But with time, and some wisdom that I could collect with growing age, I tried digging deeper. It helped me get the real reason of my trauma. It was people looking at me with pity. It did not include my school mates or other girls around me, as they would look at me and just continue with whatever they were doing. Also I did never see them looking at me with pity, but with confusion. At that was fine. What bothered and perturbed me were the elder people or the adults. Firstly, they would not stop looking at me, and secondly, they could gather some courage to come to me and ask me if my parents are doing something for my patches. When they would hear ‘’yes, they are and I am regularly visiting some skin specialist’’, they would give a look of relief, but the pity in their eyes would remain. They would walk away making the sound Tschhhhh Tschhh, bechari (poor unfortunate girl).

My relatives, neighbors and family friends, all of them, literally all of them, would talk to my parents about my patches with pity. Each time any of my relative would come to us or we would be visit them, they would talk to my parents at least once about if my patches are going less or more. I can understand, they must be worried for me. It is very kind of them and one must be glad and grateful to have such relatives. But the question now was what is that they were worried for? Vitiligo is an auto-immune disease. It is simply a pigmentation disorder where your body produces a white patch due to loss of color/pigment. This loss and the rate at which the pigment is lost is basically unpredictable, along with which part of your body this pigmentation disorder would take place. Do not forget, it is not contagious and it has no cure, by far. So, what were my relatives worried about? What did they have in their minds? What made my parents so worried that I could sense that worry in their behavior. Needless to mention that they never made me feel less of a person, they loved me the same, sometimes even more than my other sibling, they supported me with everything they could, but there was always something that I felt missing. This missing piece resulted in an unintentional trauma that I still continue to carry in my mind. 

It was my marriage everyone was worried for. Who would marry me? Who would actually take a girl with patches to his home? Which family would accept me? Acceptance was the problem. Yes, that was it. That was all behind those looks they gave me, the talks they had with my parents, the tschhh, tschhh sounds they made, sometimes behind my back and sometimes on my face. My marriage was the issue. The patches turned me from a human to an object, an object who had to be sold at some point in time. The question is who’d have it, when and how? The object had to be patch free, basically look good. It was normal for me back then, because that is how marriages actually took place in those days, some are still like that. Girls are treated like an object and must be good looking, tall, fair, capable of house-hold activities like: cooking, cleaning, washing clothes, stitching etc. This is what still  happens in ‘’arrange-marriages’’.

No matter how good a human being they are, how well-educated they are, they should be accepted by the family of the groom. This was all the dismay around me only due to my patches. Not to mention again, my parents loved me, they still love me unconditionally and their upbringing cannot be questioned. They just did their best in treating my patches so that they somehow either stay the same, or go less or in best scenario just disappear. They took me to each possible skin-specialist in the town and outside in different towns to get treatments. At the same time, they gave me all the freedom to choose my carrier and study until whatever extent I wanted to, never mentioning to me directly that marriage is essential and so your patch problem must be resolved. But I knew, evidently, that this was a huge huge issue stressing them deep down. They couldn’t help it. They gave me the strength I am today, but they were helpless. All they wanted for me is to settle down and have a nice happy family like a normal person.

I grew with it. With time and age, I began to lose all the confidence I had back in my childhood when I was unaware of what vitiligo is and what it is to have a life with patches. That time patches were just patches, nothing more nothing less. Now, they were a big deal. Something that did not only had a huge impact on my life, but how I dealt with my own issues. I was now in high school with a uniform called salwar-kurta where I wore a long upper until the knees and a lower that went until my shoes. I was well covered, summer or winter, top to bottom and no patch was visible. No more eyes looking at me with pity or confusion. I was like other girls, normal just with 0 confidence and 100% self-doubt who hated summers and loved winters, and tried to avoid have any conversation with any of my relatives that would go in any direction closer to my patches.

I passed school, went to college and lucky me, there I could choose whatever to wear. So I wore jeans or salwar-kurta or anything that covered my patches. No one knew here I was a patched girl, physically and mentally. All of a sudden, I was patch free. I was free. My mind was free, until I had a boyfriend who I had to and also wanted to tell about my pigmentation disorder problem. I wanted to tell him because, firstly he deserves to know and secondly I felt kind of nice sharing something so personal to me with someone like him. In the beginning, it went all well, he was cool and we were a happy couple. I was relieved that I have found the one who accepts me as I am.

Remember, acceptance was the problem. Until, he started to show the same behavior as my relatives and began to ask me if there’s any sort of treatment I can do for my vitiligo. It was not wrong. He wanted the best for me, he wanted me to get rid of my patches. So did I and my parents. I do not blame him for this, but again what was the core reason behind his worries was the concern? It did not take me much time to realize it was the same as all others, acceptance by his family. What would he say to his family? How would he present someone with patches to his parents? Big deal you know. Well, I finished my graduation and somehow things did not work out between him and I, due to some pretty evident reasons, I need not to mention, and I was single again. But my patches were still there with me. 🙂

It was that time, I decided to literally forget about getting into any relationship, like any other normal heartbroken person. I decided to continue my life and my education. And that my people, was one of the very best decisions I ever have taken in my life. My mother, hats off to her, she supported me like hell in those days. Though she was more than just heartbroken than me due my break-up, as she almost was worry free about my future and settling in life with a family, and break-up was not the future she envisaged for me, she still stood like an iron pillar with me. She financed my MS in Germany, even though it was almost impossible, she managed the finances and let me take over my life and blossom.

It was now 2013, I was 23 years old and I began my MS in Germany. With no one knowing about my patches, I felt confident, just felt, I wasn’t though. I was still the same girl with 0 confidence and 100% self-doubt who hated summers and loved winters. It took me time, years literally, in Germany until I could gain a bit of self confidence during my education. It was not my studies alone, but the people I met here who made me see the other side of myself, the side that I had ignored throughout. The side that had nothing to do with my appearance or my patches. The side that I should have seen long ago. The side that did not connect my marriage or better future with my patches, but with my own self. The side that had no acceptance issues.

I am 30 years old today, an aspiring scientist. It took me 30 journeys around the sun to get back to gain my confidence. I am still not satisfied as there is a long way to go, a long long way to re-gain the lost confidence and self-belief in myself. To accept that vitiligo is just as much part of my body as my organs, arms and legs. It belongs to me and I cannot get rid of it. However, I can get rid of my insecurities, discomfort and agitation that it caused me. Today I see it, it was not vitiligo, that caused me all the trouble, but the people around me, their mindset and their behavior. I know now, very well, it does not matter how I look, but what I am inside and what I aspire to become. I am on my way, it will take time, but I have already begun to work on it. 

In this whole story of my vitiligo, what I strongly believe was missing is PASSION, UNDERSTANDING and EMPATHY. I do not and should not expect it from others, but I can at least have it for others suffering from vitiligo or something similar. I have a lot of years doubting myself, and I would like to stop it now. Each one of us is as imperfect as anything can be. It should not matter how we look like. We should not wait for acceptance from other, rather believe in ourselves and have faith in our capabilities. 

muchlove