Vitiligo is an autoimmune skin disorder commonly known as safed daag in India. It results in white patches over the skin. In countries with darker skin tone, vitiligo is still stigmatized in society. It leads to a great psychological as well as financial burden at times. In my attempt to destigmatize vitiligo on the world vitiligo day, I am here to discuss my two distinct vitiligo experiences: as a ten year old and as a college student.

My Vitiligo experience as a ten year old

I was strolling in the neighborhood and got into a conversation with one of the aunties as she was asking about my mom. She looked at the white patches on my foot, covered her face with the dupatta in disgust and asked me what happened to my foot, if I ever burnt it. I told her I didn’t. I didn’t know then that the condition was called vitiligo. But I explained to her with whatever knowledge that I had at that time. She made a face and told me that I should keep it covered because when a stranger may look at my foot, it might scare them!

As I said, I was ten years old. I didn’t know much about society. I didn’t know about the do’s and Don’ts of a society. But one thing that I knew was that the woman was wrong. Completely! Even as a kid, I had a lot of insecurities about myself- be it for my wheatish to dark complexion or me being extremely skinny. But one thing that I was never insecure about were the white patches. Something in me always told me that I don’t need to choose footwear that would hide my feet. Especially for the sake of other people.

Living with a skin disorder

I believe it was mostly because of the way it was dealt at my home. I was probably 5-6 years old when my mom noticed a small white dot on my great toe. From Ayurvedic, homeopathic to allopathic there was nothing that my parents didn’t go for. I was advised not to have Vitamin C and a lot of other tasty stuff. Every time I wanted to eat something and I couldn’t, believe me, my mom felt worse than I did.

I still remember the bad smell and the taste of kadha that I was prescribed, the paste that, not metaphorically, but actually looked like cow dung. However, after few years of my parent’s struggle it was under control, only limited to my foot and I could stop the treatment,

With all the doctors appointments and the medicines, I was never made to feel like something was wrong with me. I was never taught to hide my foot. The treatment that my parents sought was to treat the autoimmune disorder that I had. Not because no one would marry me if it spreaded to the rest of my body..

The Indian skin is predominantly dark skinned, and thus hypopigmentation i.e., the white patches are more evident and hence, more stigmatized. As per the research paper, The psychosocial impact of vitiligo in Indian patients, the disease was perceived more severe in women and it imposed a significant psychological as well as financial burden. 

I sometimes wonder if my parent’s and my psychology would have been the same had it spread to my other body parts. Maybe. Maybe not. 

Stigma associated with skin disorders in the society

Recently I saw an Instagram profile of a girl with vitiligo. For her, it started with some patches, but eventually it spread to all of her body, making her even tone and look a white blonde. She seemed to be embracing it beautifully well, but there were people in the comment section telling her that this is not normal and needs medical attention. I saw her giving an explanation about it to her followers later.

It broke my heart. For someone who has been suffering from the disorder for years, do we really need to point it out and remind them that they have a disorder? Doesn’t she know it better than those who don’t have it?

I can write it in one sentence that people with skin disorders face plenty of psychological and emotional stress due to the disorder. But it won’t be fair. The foolish remarks of people, bullying in teenage, living in a body and feeling so uncomfortable in your own skin that you avoid getting out of the house- living all of these experiences every single day is a too big of a struggle to be put in one sentence.

Do we need to destigmatize vitiligo and other skin disorders? Definitely. Should this be the reason that one feels uncomfortable going to social gatherings? Or should this be affecting someone’s education or employment rate? Definitely not.

How to destigmatize skin disorders?

• By Learning about the condition and spreading awareness. I believe if more people understood it, it will be easier to embrace it for the people suffering from it and more importantly for the rest of the population that likes to have an opinion!
• Make a conscious effort not to stare
• Refrain yourself from asking irrelevant questions
• Refrain from giving unrequited advice
• Do not give them “aww, you poor soul!” looks. Just try to accept them for who they are without telling them to hide their body parts or reminding them that they need medical attention.
• If you have someone close suffering from it, just be there with them. Listen to their concerns, encourage them for outdoor activities.

To learn more about Vitiligo, read: Vitiligo: Skin disorder and living with it

I talked to a friend about losing my direction while writing this article. He suggested that I shouldn’t bash society. He told me it was up to me if I wanted to help people with vitiligo by finding a solution or showing them as victims. 

I tried, but honestly, I believe, it is not up to me to find a solution. It’s a doctor’s job. But our job, as a society, is to let them live. I think it’s high time that we stop judging people for their looks, the color or the freckles on their skin.

My Vitiligo experience as a college student

I was in college. One of my friends, Aditya Mehra, patted my shoulder and showed me a picture on his phone. It was from a shoot of a vitiligo model. And his words were “Kitni sahi lag rhi hai na” (roughly translated as she is looking so amazing). Without objectifying the woman in the picture, we discussed how amazing she looked doing what she wanted and talked about vitiligo. And I think, as a society, that is the solution! Bringing up the topic only when it’s relevant- without judgements or stupid questions.

What do YOU think the solution is? Comment down below.