Vit – il – i – go was the way the doctor sounded the disease out to me. Bit of a tongue twister for a seven year old. Still to this day, the sounds trip over themselves as they exit my mouth. I always thought it sounded like the name of a dinosaur and that entertained my seven year old brain. When I started to develop the mysterious white patches all over my body, my parents thought it was skin cancer. Not an ideal thought for any parent and I was immediately referred to a specialist. I vividly remember the day so well, the layout of the office and the doctor’s tie (it had pigs with wings on) and I remember being completely mesmerised by it. I assume that was a tactic used by most children’s specialists, wear something so that the child becomes utterly consumed by it and is therefore less frightened. His tactics worked with me as it distracted me from what he was saying completely.
The Impact of the Condition
At age seven, this diagnosis was not necessarily life-changing for me. I was at primary school and too busy enjoying my childhood to give it much thought. Visually, I looked different but essentially I was thriving. But at such a young age, I never understood the health factors of the disease. Vitiligo is defined as ‘a common progressive de-pigmentary condition that is believed to be due to the autoimmune-mediated destruction of epidermal melanocytes.’ This essentially means that the immune system attacks itself (i.e not really convenient in a global pandemic), resulting in the loss of pigmentation in the skin on certain areas of the body. The condition varies visually from person to person, some people only get very small patches on their body whilst others, like myself, get much larger, white patches that join across large sections of the body. There is no way to determine how much skin will be affected and often the shape and size of each patch differs each year.
Self-Confidence
When I reached secondary school that is when I began to struggle a lot with my self-confidence. I knew that there was a lot more potential for bullying. I went from a school with thirty pupils where everyone felt like family, to a secondary school with over two thousand pupils. Looking different at secondary school was NOT ideal. I felt I did not fit in so I purposefully hid my white patches as I did not want to bring any attention to them. I got used to the comments- ‘You should sort that fake tan out’, ‘That is not your skin, you are lying’ and so on. The comments made me feel like I was ugly and undesirable, but more importantly, that I was strange because visually I was different to them. All I wanted was to have skin like them so that was when I developed a long term, yet complicated, relationship with fake tan.
Mental Health
In a guideline for the diagnosis and management of Vitiligo, it emphasises the psychological effect of the disease. Vitiligo is often immediately visible to others. Those with the condition may suffer social and emotional consequences including low self‐esteem, social anxiety, depression etc. I suffered with my mental health growing up and still do now. The psychological effects of Vitiligo definitely played a part in that. I have gone about my life assuming I will be judged on my appearance and that does take a toll on you psychologically.
Over the years my love for my body has changed and I am more accepting of what I look like. It cannot be changed so I am on the path of learning to love it. I have my days, summer I find the hardest. With more skin on show I notice the staring and pointing and whispering. My natural skin tone tans very easily in the sun and therefore makes the patches a lot more prominent but also means I am more susceptible to sunburn. I have been dealt many lessons through sunburning my white patches and have learnt for the sake of my skin’s safety, SPF is my best friend.
Representation and Self-Image
Speaking for myself, I think there should be a lot more representation within the media on Vitiligo. The first person I ever saw with Vitiligo was Winnie Harlow. Up until that point I believed I was the only one. For young girls, image is a part of growing up in today’s society and the media definitely portrays a specific take on beauty. So because I never saw other women like myself, that really damaged my self-image. I want to provide some awareness of this disease and the trials and tribulations I have experienced behind the scenes in the hope that others do not experience what I experienced. I am learning that I am unique and different and that is OK. Different is special.
Written by Emily Rooms
Photo credit to Dollar Gill. Image license can be found here. This image has not been altered.