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Submitted by PatientsEngage on 25 June 2019
A man with a beard in a black t-shirt holding a guitar that clearly shows his hands with white pigmentation

Akash Tiwari, 23, who has Vitiligo, had to fight severe depression and discrimination, to embrace his white patches. Today, through his Foundation, Aarus, he empowers people with Vitiligo accept themselves and come to terms with their body image.

Trigger Warning

My story is like many other success stories of vitiligo. I am no longer afraid to tell the world about my white skin patches. I have accepted them as part of my life and they no longer hold sway over my choices and my decisions.

But there was a time, not many years back, when I was in caught in the grips of anxiety, depression and, even contemplated suicide.

I was 18-years-old when the first white patch appeared on my body. It was small discoloration on my right ankle. Since it looked like a bruise and was not bothersome, I never worried much about it. But a few months later, similar patches surfaced on my knee and elbow.

I visited a skin specialist who inspected the spots and diagnosed it immediately as leucoderma or vitiligo. He said there was nothing that could be done. Anyway, he prescribed some medicines and cream and said, if I applied the cream every night on the white patches, they would not spread. I began to diligently apply the ointment, but the patches kept increasing in size and were spreading elsewhere on my body. I was becoming slightly conscious of them. I began to discreetly make changes in my wardrobe, switching to wearing full pant and full sleeves shirt.

But when they started appearing on my palm and face, there was no escaping them. I started becoming extremely conscious of my appearance. I started thinking about how I was looking and what would other people think and say. There was nobody in the family I knew who had ever had any problems with skin discolouration. So we didn’t even know how to handle the problem.

Did all to stop patches

We did all that anybody recommended to stop the disease. I tried homeopathy, Ayurveda and many alternative medicines. I visited a clinic where they claimed they have been successful in treating Vitiligo patients and gave me some powdered concoction. One doctor told me to avoid having all white products, and I promptly stopped having milk and curd – some of my favourite things. Some others told me to abstain from sour food, citrus fruits, tomatoes, even pickles and coffee. I obediently did that too. I must admit that it was extremely hard, because I am a big foodie.

I was so desperate to stop the patches from increasing on my body that I even braved bizarre crazy propositions. When I visited my hometown in Uttar Pradesh, they said it is the shraap (curse) of DeviMa. Some ojha or quack claimed he had supernatural power to cure and gave a piece of wood and advised that I soak it in water and have it first thing in the morning. I was also told to apply some oil and sit in the sun everyday. Someone else suggested I only have jaggery and roti for three months. I had it for a week, after that just the sight of jaggery would make me sick.

Also Read: I Tried Everything For My Vitiligo

This went on for several years. Lots of people told me lots of different things to stop the patches. I did everything. I tried pills, herbs, lotions, sat in the sun. But contrary to all promises, my patches kept increasing. Many of them appeared on my face making me very self-conscious and uncomfortable. I began to realise that there was no cure and I would live with this disorder for the rest of my life.

Began losing friends

As my patches became more visible and pronounced, I began losing friends. Those who would come home and eat with me stopped coming one by one. Even in college, people stopped sharing my tiffin. They ensured there as little contact with me as possible. Some would even go and wash their hands, if I came in contact with them accidentally. People would make fun of me and call me names. I remember a few of my classmates would call me ‘zebra’. I began to hate myself. I would feel disgusted looking at myself in the mirror. I would hate stepping out of the house because people would avoid me or call me names. My confidence and self-esteem had totally ebbed away. I got into major depression and would often weep to myself.

Myths and misconceptions of Vitiligo

I started toying with the idea of committing suicide. I didn’t want to live like this…with shame and hatred. One day I left home. I had decided to end my life by jumping on the railway tracks. I went to the station and stood at the edge of the platform waiting for the train to arrive. Suddenly, the face of my sisters and my parents flashed before me. I was overcome with intense emotion. I could see the train coming in the distance, I immediately withdrew away from the platform and slumped on a nearby bench. After a long wait, I returned home, determined to return again with a stronger mind.

The turning point

Believe it or not, the next day an old neighbour came and gave me a copy of the Bhagvad Gita. He said, ‘Read this. It has answers to your problems.’ Initially, I just kept it aside, but when I picked it up later, there was something that resonated with me. Somewhere it said: “We are not our body, the body is not ours. The only thing that is ours is our soul.” That boomed within me.

I began to realise - why should I be ashamed of myself? Why should I worry about what people say? As long as my soul is clean and good, nothing else matters. My body is only a temporary vessel for my soul. You have to find confidence in your own body. My vitiligo is part of me so I’m not going to hide it. We are not just our body, we are our soul. We need to embrace our body and love it as is. I stepped out of my room that day a changed person.

Also Read: Vitiligo and Positive Body Image

I went on Facebook and Instagram and starting posting my picture with all my white patches for the world to see. I started to build a positive conversation around the condition. I started an interactive online support group for vitiligo. I began encouraging people to believe in themselves. Gradually people started contacting me. They began sharing their issues and concerns with me. The stream of people who joined me online was amazing. I decided to do something bigger.

Article contnues after the image of Akash holding a poster of Aarus Foundation

Reaching out to others

In 2017, I set up Aarus Foundation (acronym for Ability to Achieve your Responsibility with Unity and Support) with the objective to raise awareness about vitiligo, reach out to people with vitiligo, understand their difficulties, share their experience and help people come to terms with their body image. I wanted to raise a voice to help others so that no one would have to suffer. Through Aarus, I started counselling people. I hold seminars in colleges and talk to students about vitiligo. Now I empower people with vitiligo to accept themselves. People need that encouragement to believe in themselves.

I want the next generation to be aware and accepting of vitiligo.