My vitiligo started when I was around three or four years old. Being so young I wasn’t aware of the condition and that it was something that would make me stand out from everyone else. I believe it started around one of my eyes and slowly began to spread. One of my earliest childhood memories is my dad holding me up in front of a mirror so I could see my reflection and being happy that my vitiligo wasn’t visible. Soon after, my parents looked into camouflage makeup which I didn’t use it for long as I didn’t want my Mum to apply it to me. There was something about applying makeup that made me feel uncomfortable, perhaps because I was becoming more self-aware and the feeling that I was different.

Throughout my childhood, I continued to lose my pigment with vitiligo affecting my skin at speed and even at a young age, I was very aware of what was happening and it made me feel different. Other kids at school started to ask me questions and I could feel them looking at me differently, like I wasn’t the same as them. It made me extremely self-conscious. I’d always hear people inquisitively asking my parents what was wrong with me. It was tough; I don’t recall having a period where I felt truly happy, as my childhood was plagued with thoughts of my constantly changing skin and whether it would get worse and how people would treat me. I had always been a shy, quiet and introverted child and I feel like vitiligo and having vitiligo, I feel, made me feel worse.

I don’t remember being diagnosed, perhaps my mind suppressed this memory as I was so young. I didn’t even recognise the word vitiligo until I was 21. I grew up not knowing what the condition was from a medical perspective, neither did I meet or see anyone else with it. I remember being taken to various homoeopathic clinics and hospitals during my childhood for treatment, but nothing seemed to work and I, along with my parents would be left feeling disappointed. I never had any definitive explanation for my condition, and all I would hear were conflicting stories about why I looked the way I did, even from my parents. Some people said I had a blood problem, others would say it was because of something I did in a past life, but most often it was just referred to as a skin condition.

Despite being young, I got to a point where I was fed up with being dragged to different clinics and being forced to use creams and take tablets that never seemed to work. Some how I communicated this to my parents and eventually, they stopped pursuing treatment options. At first, they were resistant as they were obviously trying to support me in finding a cure, so that I could live a normal life as possible. But I was at an age where I felt comfortable to take a stand and take control of my life. As people with vitiligo know, the search for an effective treatment can be so draining and I didn’t want to spend my time tirelessly trying different treatments that weren’t guaranteed to work. Today, I don’t regret this decision at all.

After abandoning treatment, I just got on with life albeit without any real support. I didn’t receive any special treatment or consideration in school, neither did I get any psychological support, which was the biggest battle. I became very introverted. I didn’t like going out and doing regular day-to-day things because of the looks and comments I would get. I would suffer a lot in summer and would desperately try to keep myself covered up. I would usually just sweat in silence and try and pretend it wasn’t as hot as it was. I remember at some point our school uniform changed from a shirt and blazer to a polo shirt and this was my worst nightmare at the time. I would do everything possible to avoid wearing a t-shirt and showing my patchy arms. To this day I still prefer the winter months because I know that’s when I can naturally stay covered up. Growing up it was comments about my patchy like “why are you so white”, that would upset me. I feel much safer in my long sleeve tops and jeans.

Communicating how I felt was extremely tough, and often I felt misunderstood. People would assume that I was just quiet and unsociable when in reality, I was struggling to process what had happened to me and how I was feeling. My vitiligo was changing my character day by day, and I didn’t know how to combat that on my own. I knew I was becoming someone I didn’t want to be and was suppressing my true self out of fear of judgement.

Having vitiligo made me feel scared and frustrated. Not only was it due to looking different, but also the confusion of never having answers as to why I had developed it. I constantly felt like an outsider, feeling abnormal for how I looked and felt. I couldn’t imagine other kids my age having the same troubles as me. All of these feelings made me very angry and resentful, and although I was a good kid, I remember many instances where I was a nightmare for my parents. In hindsight, I think I was acting out due to my feelings of hopelessness. Those feelings do re-emerge at times when I receive negative comments about my appearance, but there were some turning points as I got into my late teens and my skin began to even out.

People started to look at me less, I’d get fewer comments each day and the positive interactions such as having a conversation with someone and not feeling judged or being asked any questions, would boost my confidence making me feel more comfortable within myself. Something as simple as going to the supermarket and not being stared at was a huge win. Slowly, I was able to start looking at people directly, rather than avoiding eye contact. It was around this time that I had my first relationship, which was a positive time in my life. It allowed me to enjoy things other people my age were experiencing. Growing up, I never thought I’d date anyone because of my skin, so this was a big deal for me as it allowed me to understand that there were people who saw me for more than just my skin.

Historically, there has been a lot of stigma in the Asian community if you look different to the status quo. It’s hugely frowned upon and often the thought is that you’ve done something wrong in a past life. This meant that growing up, my skin became something that wasn’t spoken about. Although people might think it was good that I was being treated normally it was quite frustrating because it was because people avoided it because of the stigma and had the attitude of ‘we don’t talk about it’ which created discomfort. Instead, I needed it to be talked about and I needed help. As I lost my pigment, I progressively began to feel more of an outcast amongst my community. It felt like most of the judgement was coming from places that should’ve been considered safe and free from judgement such as at temples or family gatherings. It was those experiences that made me distance myself from my community, but with age, it became easier as my parents weren’t able to force me to go anywhere that I didn’t want to.

Despite escaping the people who were constantly judging me, I felt very disconnected from my heritage. I spent a long time not knowing where I belonged and my relationship with religion changed drastically. I didn’t know how to identify myself anymore. How could I call myself Indian when my skin had turned almost completely white? I felt like I’d lost that right because very few people made me feel like I still had that entitlement. Taking part in things with my family felt harder as I looked different to them, so isolating myself was easier, even if deep down I wanted to be involved. Having vitiligo has in many ways, been a cycle of me trying to fit in and find my place. When I was younger with patchy skin, I didn’t fit in, and even now that I’m older and completely white, I still don’t know where I stand. When I began to connect with people in the vitiligo community for the first time, most people would either ask me for a cure as they wanted to look like me or didn’t consider my condition to be as bad because my skin was even, so I didn’t feel like I fit in that community either.

Now, I have come to love my skin. I love being unique and seeing that my skin sets me apart from everybody else. I wouldn’t change it, as this is who I am and I have finally accepted myself. The journey that I went through to reach this point has allowed me to build a stronger determination in everything I do. My main focus is to live the best life I can and connect with others in the vitiligo community so that I can help them with their journeys too. I still have bad days where I get frustrated with my skin, but if my younger self could see how I live now, I think they would be pretty happy with how far we have come. I don’t feel the need to fit in anymore. I am comfortable being different and being me. I’ve learnt that I don’t need to be defined by my skin to fit into a particular group and others shouldn’t feel that way either. Having an identity is much more than just the colour of your skin, like the kind of person you are and your values.

Vitiligo is a part of who we are, but it isn’t everything we are. You don’t need a label, you are in charge of your own identity. Always try and support the people around you because no matter how someone looks, it could be a completely different story mentally. Rather than assuming people are okay, take the time to make sure that they are, especially in the vitiligo community. Not everyone can understand what we go through daily, which is why it’s important to stick together. It’s also important that people have good psychological support, as this is as much a mental battle as it is physical.

I wish I had known that a “normal” life is possible. Vitiligo doesn’t have to limit us. Instead of thinking I couldn’t do things that everyone else was doing, I just needed to build the confidence to do so. With time, this can happen for all of us. I hope people can resonate with my story and the mental challenges that come with having vitiligo. I hope it prompts people to share their own experiences in a way that can help others.