3 impactful case studies that uncover the real meaning of beauty!
Have you ever stopped to consider the true meaning of beauty? In a world obsessed with uniformity, conditions like vitiligo challenge these norms, prompting us to look beyond the surface. Changemaker Zeal Gogar takes us on a journey to understand the complexities of vitiligo and the inspiring ways people navigate it.
Her interviews with Krishna, Simran, and Kartik. Each experience sheds light on the unique challenges and triumphs associated with vitiligo, offering a glimpse into the resilience of the human spirit. Keep reading to discover their journeys and Zeal’s compassionate perspective.
In a world often dictated by perceptions of beauty and uniformity, there exists a condition that challenges these norms, both physically and emotionally. Vitiligo, a condition that affects the pigmentation of the skin, is not merely a dermatological disorder; it’s a journey of self-acceptance, resilience, and the pursuit of awareness in a society that often overlooks diversity. Imagine waking up one day to find patches of your skin losing their color, gradually turning into a mosaic of light and dark shades. This is the reality for millions around the world who live with vitiligo. Yet, despite its prevalence, it remains widely misunderstood and stigmatized, nowhere more so than in a country like India, where misconceptions and taboos often overshadow knowledge and compassion.
What is Vitiligo?
Vitiligo, scientifically known as Leucoderma is a long-term chronic skin condition that makes one’s body lose its ability to produce or even reduce existing melanocytes (Melanin producing/containing cells). Melanin is a substance responsible for producing hair, eye, and skin pigment. Why exactly this happens is still unknown and is being researched. Anyone can get vitiligo, although there is no specific age as to when a person develops it; however, over 95% of people who have it are diagnosed before they turn 40.
Common Myths:
It’s crucial to understand that vitiligo is not a disease; it’s a condition. It’s not contagious and does not pose a threat to a person’s life. Yet, the misconceptions surrounding it often lead to unwarranted fear and discrimination. Here are a few myths surrounding Vitiligo:-
● “Vitiligo is contagious or infectious” No, you cannot get vitiligo by touching or being near a person who has it. It is not contagious.
● “Vitiligo is the same as albinism or leprosy” Vitiligo is often assumed to be leprosy, especially in India while in fact it is quite different.
● “Vitiligo can be caused by consuming fish and milk together” Vitiligo cannot be caused or treated by any combination of foods.
● “Vitiligo only changes appearance” Vitiligo is known to deteriorate people’s mental health and well-being in most cases. Vitiligo is more than skin-deep; it’s a condition that affects individuals on multiple levels. Beyond the physical changes, it can profoundly impact one’s mental health and self-esteem. The lack of awareness and understanding only adds to the burden carried by those living with vitiligo, leaving them feeling isolated and misunderstood.
My journey around vitiligo and what is my reason to spread awareness?
While I was growing up I often encountered people with these whitish spots on their faces and their hands, and as a curious kid, I wondered to myself what was happening to them yet socially aware enough to know it’s not proper to stare or ask. So, one day I went home, typed ‘white spots’ on the internet, and watched videos about what the white spots and melanin were. The next time I saw another person with Vitiligo, I was at the mall with my family and my brother started staring at them. My aunt said ‘It’s not proper to stare’ and they moved on. This incident hit me with the realization and acknowledgment of the lack of awareness surrounding vitiligo. How sometimes even people who had vitiligo were not educated about the condition.
When in middle school one of my best friends had vitiligo. I witnessed her being called ‘the girl with white spots’ ‘Oh the white spots one?’. In one of our conversations which got deep, she told me about how she went through years of trying treatments that to me seemed inhumane. Lying in the sun for 4 hours every day? Consuming medicines that weaken your immunity? All of that ended up the same and further learning the condition didn’t even pose a threat to her life. She talked about how she cried almost every night after coming back from trips to hospitals around the country, trying treatment after treatment, and still made to feel as though she was not the same girl who people called beautiful before the spots started appearing. Her struggle through self-identity and self-image issues as a result of unawareness around her while growing up represents millions of people’s struggle who have vitiligo. This became a breaking point for me to stop accepting how my brother stared at that person, how my neighbor referred to my friend as ‘the girl with white spots’ and to actually do something about the issue. This is the reason I am typing this right now asking you to take some time to educate yourself and possibly about Vitiligo and its effect on mental health.
Experiences of 3 individuals as they battled their separate yet inspiring journey with Vitiligo:
We’ll start by exploring the emotional terrain of living with vitiligo, delving into its impact on mental health. By looking at how these individuals overcame their struggles with vitiligo. As we embark on this journey together, let us open our hearts and minds to the diverse lives of humans with vitiligo. Let us embrace the colors that make each of us unique, celebrating the beauty of our differences rather than shunning them.
● Krishna, Age: 59
Krishna, from Mumbai, started developing vitiligo during his high school years. Although his father had vitiligo, it wasn’t that spread out and his family was still not aware of what was happening leaving his questions about it unanswered. People around him thought it was leprosy and avoided going near him thinking it was contagious. He battled with social anxiety due to the impact of vitiligo on his self-image and avoided going in the spotlight or speaking up even when he wanted to. He says although he was blessed with support from his friends and wife after his 30s, his 20 years of trying treatment including going to several dermats and even trying homeopathy drained him. The immense amount of hope, energy, and money from his life that went into this had an impact on him and made him self-conscious. He says “There is a lack of authentic and genuine people while going for treatments, people still think about money and advertise with fake claims at the cost of people’s mental health”. Krishna’s son also ended up having vitiligo showing a case of 3rd generation hereditary case here. ‘Vitiligo can be considered hereditary. Even though vitiligo is not strictly associated with family genetics, it can run in families. Approximately 30% of people with the condition will have a family history of vitiligo. Therefore, children will not get vitiligo strictly on the grounds that a parent has it. However, they do stand a higher chance of developing the condition.’ says vitiligosociety.org. Krishna explains how his own personal experience taught him how to raise his son with vitiligo, not letting vitiligo stand in the way of anything he dreamt of and was capable of “My son not ashamed of his vitiligo and even went to the US to pursue his higher studies” he proudly said.
● Simran, 22
Simran is a recent graduate from Bangalore. She was diagnosed with vitiligo at the age of 16, and no one except her family knew she had the condition till very recently. She said, ‘I had a neighbor who had these spots and when I got them I knew I didn’t want people to judge me as they judged him’. Simran went through cosmetic camouflage which basically burned the areas of her body which lost pigment. Every time it would heal or a new spot would appear she had to go through it again. She also took medicines that weakened her immunity since vitiligo is believed to be an autoimmune disease. She used to put loads of makeup on her face which also led to acne. “I felt like I was putting on a mask, afraid someone would see through the unfinished peeks,” Simran said. The process was not only time-consuming, required high maintenance, and cost a fortune but also severely impacted her mental and physical health. She decided to stop in her last year of college and finally decided to stop with everything and let her skin and body be as they wished. She was exhausted and believed it was time to be herself and let this burden down feeling like an imposter all the time. She gave up on the treatments and medications letting her skin heal and the spots on her body be visible. Gradually she limited the makeup and also told all her close friends and family. To her surprise, all of them very gracefully accepted her and encouraged her to embrace her vitiligo sharing stories of other people in their lives who have vitiligo. She also went to therapy to help her in the journey of self-acceptance. It has now been more than a year since she has completely accepted herself and proudly embraced Vitiligo even highlighting her spots on Vitiligo Day. She believes if she saw more awareness around it her neighbor wouldn’t have been through so much and nor would it have led to her stigma and fear surrounding vitiligo.
● Kartik, Age: 19
Kartik saw a spot near his feet, pointed by one of his friends in school. Although he didn’t pay much attention then, later on, his mom asked him and when he didn’t know how the spot came about and said there was a similar one on his shoulder, they thought it best to see a dermatologist. The doctor said that although there are many treatment options, none of them can cure vitiligo and will take a lot of money and energy. His family said that if he wanted to try the treatments he could and if not that is also fine with them and he would have their full support regardless. Upon doing research and talking to a few people who had vitiligo, he decided to not go through any treatments and told his parents. He said, “My parents were quite happy with my decision and I had their complete support as they were aware of the condition and its impact if not carefully dealt with”. He waited a few days and told his best friend and a few close friends at school. His school friends decided to hold an awareness session there about what vitiligo is and bust all myths around it so that when Kartik’s vitiligo spreads no one would stare or make him feel like an outcast, and Kartik would also not wonder if anyone in school is thinking about his skin. “I think I’m immensely fortunate to have been surrounded by people who were educated about Vitiligo and its possible impact. They have been my backbone in handling myself when days get hard”. He still has a few hard days here and there but he believes that every teenager goes through insecurities sometime in their lives, I’m just lucky to have the support and not have to go through them alone.
These journeys have inspired me and I hope they inspire you too. Through understanding and empathy, we can create a world where vitiligo is not a mark of shame but a badge of courage, where every individual is valued for who they are, not how they look. Let’s start by educating ourselves and others around us to help make our community vitiligo-friendly.
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