Aditi Goel, 30, a budding food entrepreneur, recounts how the tough upbringing of her parents helped her come to terms with her vitiligo and how she is ready to pull the punches when faced personally or professionally with discrimination because of her depigmented skin.
My first vitiligo patch appeared when I was two-years-old. It was under the eyes. My parents freaked out when they saw the discoloured skin on my face. Not because they were unaware of the disease, but because of the harsh discrimination and ostracization that goes along with it. In fact, my father and uncle both have vitiligo. They’ve had their fair share of hard times, but my father does not let it sit heavy on him. He still jokes that his vitiligo was so widespread that he was half white and half black at the time of his marriage.
But deep down I know they were extremely concerned about my vitiligo. They did all to contain it. My mother made me do the typical miracle-and-mercy rounds of visiting temples, priests, quacks and gurus; she made me sit in the sun for long hours and gulp crazy concoctions - but it was all in vain. My patches only increased. They appeared on my hands, torso, knees and legs also. Finally, I was put on steroids. They were strong medicines that left me drowsy and lethargic most days.
I was the butt of mean jokes
As a kid, I was diffident. My vitiligo patches had made me even more reserved and supersensitive. In school, the usual would happen. My classmates would sit away from me or not share their tiffin. I would be the butt of many of their mean jokes, and would often return home sobbing. I recall once a man passed a dirty remark which pricks me till today. He looked at me up and down with loathing and loudly cautioned: ‘Don’t have that water. She has touched it. If you drink it, you too will get that disease.’ My mother was there with me. I saw her agonised look and a tear roll down her face.
I think that comment was the turning point in my life. My parents realised that only a tough, resolute upbringing would make me strong, bold and fearless. I was living in Jabalpur, Madhya Pradesh at that time. They started taking me to the Rotary Club with them every week. At the Club, my mother would make me interact with differently-abled kids there. She would constantly make me reckon that I had nothing to fear, feel wretched about or victimize myself. My father would often pep me up with lines like: ‘You are a tiger with two colours.’
Important to become mentally tough
Their relentless effort to toughen me mentally began showing results. By the time I reached middle school, I had metamorphosed into a supremely confident, self-assured, in fact, bold and brassy teenager. Dare anybody browbeat me now! So once when the class bully began jeering at me, I think all the bottled up past fear, frustration and new-found spunk came down heavily on him. I thrashed him blue. Other similar instances followed, where I would not tolerate any bullying from anybody. Slowly, my whole school began to look at me with greater regard.
There were occasions when my older sister would lean on me to fight for her cause and ward off unwanted elements. Fortunately, I was a bright student and good at sports, so I never really got into trouble.
Short birth spacing could cause Vitiligo
I am 11 months younger to my sister. From what I gather, short birth spacing could be one of the contributory factors of my vitiligo. After delivery, a woman’s immunity is low. The pigment-forming cells known as melanocytes may have a weak presence. As a result inadequate melanin is produced. Melanin is the pigment that gives human skin, hair, and eyes their colour. Vitiligo may have a lot of different causes. Since my father had vitiligo, I was more predisposed. So, maybe the short birth spacing worked against me. When I have my kids, I will ensure that there is at least a three year gap between them. I wanted to bring this to other people’s notice as well.
PatientsEngage: Vitiligo is an auto-immune disease. We have not found any research that shows co-relation between inter-pregnancy interval and vitiligo. There is a genetic factor though.
Huge stigma for marriage
Thankfully after 15 years of continuous steroids, the vitiligo patches from my face have disappeared totally. People with vitiligo still face a lot of discrimination in society. The rejection is most evident and hurtful when it comes to marriage. There is a huge stigma attached when it comes to marrying someone with vitiligo. I myself have faced rejection so many times. There are many people who still believe that vitiligo is contagious. Vitiligo is a skin pigment-related issue and therefore not contagious at all.
Although there is lesser discrimination now, I think it will take another 50-100 years, before society starts fully understanding and accepting people with vitiligo. Till then, we have to keep battling for inclusivity and equity.
Today, I am in a happy, self-assured space, soon to get married. It is because of the strong, unwavering upbringing of my parents that I do not let my vitiligo patches override my life today.
How I manage my Vitiligo
- Vitiligo Diet – Avoid white coloured food items like milk, yoghurt and other milk products. Add more beetroots, pomegranate, carrots and bright coloured fruits to your list.
- Yoga – helps you relax and de-stress. It keeps the mind and body calm. Emotional and physical stress can trigger white patches. So, it is crucial for a person with vitiligo to build on happiness.
- Mirror Therapy – I use the Mirror Therapy constantly to boost my ego and self-confidence.
- Shun negative people – They are ridiculously critical and spot a problem everywhere. They are not good for your morale or your vitiligo.
(Aditi Goel completed her Hotel Management from Australia and is the founder of a food business start-up Food-E: Culinary Experts, a first-of-a-kind service in the country that brings together, all aspects of the culinary world. Some of her clients are Fox Life India and Femina.)
