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Submitted by ketaki jani on 17 September 2019

In 2015, Ketaki Jani, was absolutely shattered when she developed alopecia and lost her hair. Being ill at ease with wigs and caps, she decided to get her bald scalp fully tattooed. Read her bold, unconventional battle.

*Trigger warning

Could you tell us a little about your condition?

Well, I am survivor of an autoimmune disorder called Alopecia. Here the person loses hair as per different degree and types.

What were the early symptoms? What made you see a doctor?

One day, while moving my hand over my head, I touched upon a very soft surface of my skin. My friend informed me that a small patch, a small round equivalent of 25 paise coin, had lost hair. I was shocked. I had long and silky hair which earned me the nickname of actress ‘Dimple Kapadia’. In the evening, I rushed to the doctor and heard the word ‘Alopecia’ for the first time.

Please describe your experience of managing your condition?

Frankly, there was nothing I could do to manage my condition. I was shattered and emotionally totally crushed. I was desperate to save my hair anyhow, at any cost. But with each passing day I was losing bigger clumps of hair.

How did you mentally/emotionally cope with your condition? How has your family supported you?

If it had not been for the unconditional love, concern and care of my kids, my daughter, Punyaja and son, Kunj, I would have probably not been able to face it. Also, strange as it may sound, but the wholehearted tenderness I received from my two pet dogs, Niki and Puku, helped me build my resolve. Later I was lucky to find friend who understood and supported me all the way. Even many office colleagues were of lot of help.

Does anyone in your family have alopecia?

No.

What were some of the challenges you faced?

Oh…I faced umpteen challenges. They were all shattering and devastating. Some of my friends, neighbours and onlookers would stare at me, taunt me and laugh behind my back. They began to ignore me and kept their distance as if I was untouchable or suffering from dreadful contagious disease. I had become an ‘undeclared social boycott’. I was afraid to go out during the day, and wait for darkness to step out. I felt like killing myself and even contemplated suicide several times. But the thought of my kids held me back. What will they learn from me if I die by suicide?

What kind of specialists do you consult and how often?

I have contacted all types of so called experts. Tried each and every treatment: Allopathy, Homeopathy, Ayurveda, Yunani and all that you can think of.

Living with hair loss can be hard. Have you ever tried wearing a wig or a scarf or a cap?

Yes. I bought two wigs but I was not comfortable with them. I felt as if I was not what I was in real life. Why should I be not true to myself and carry unnecessary burden/weight on my head. I used a scarf too. But later I realized, understood, followed and immediately accepted that wig and scarf are not for me. Why the hell should I bother about the comfort of others? If they don't like looking at me, they can go to hell. Why should I curse and crush myself for others. No way...

You have broken the stereotypes associated with bald women getting tattoo on her entire head. How and when did your arrive at this decision?

In fact long before alopecia, tattoos would always fascinate me. But I was in search of unique place on my body where no one had got tattoo done before. In 2015, after I got alopecia, I was looking in the mirror one day at my bald head and it was then that the thought struck me. I thought I had the best in the world for my tattoo - my bald scalp (best canvas).

But it was not easy. Initially, I was refused by almost all tattoo artists. Finally, one relented, though he confessed he had never tattooed anybody’s head. But I was firm and adamant. I pushed on. One thing I must alert everyone, that getting a tattoo done on the scalp is not easy. It is a very painful, agonising experience.

Getting your head tattooed is a very bold decision. What is the response you have received from people?

My kids were supportive from the beginning. They used to accompany me while the tattoos were being made. But others reacted differently, even disparagingly.

Would you recommend a tattoo to others to cover their bald patch?

No. It depends from person to person. It is painful and costly too. Do it if you like it but not to hide the bald patch.

You also participated in beauty pageants after your alopecia? Was there any moment of awkwardness?

No, I was never awkward. But I could sense a mixture of taunts and sympathy. Some even poked fun and rejected me outright. The only positive vibe I got was from the judges. They were impressed with my presence, look, style and especially confidence.

What is your advice to other people with alopecia?

My first and biggest advice to people with alopecia would be –

  1. Please accept yourself as you are. If you accept yourself, you will bother less about others.
  2. Live for yourself, you have got only one life.

I am happy that my pain, pathos, turbulence, struggle and achievements, in fact entire journey, is captured by author and senior journalist, Praful Shah, in a Gujarati novel Agnija, which means: Daughter of the Fire. This novel will help me create awareness for alopecia. Now my mission in life is to create understanding and spread awareness about alopecia. I use all platforms to for its cause. I even participate as show stopper in many fashion shows to spread the message. Apart from it, I am also running a Facebook page called Support and accept alopecia with Ketaki Jani. I am also running a alopecia awareness series on my FB page. Many alopecians and their parents, inbox me their problem and I always advise, inspire and support them.

So, yes all Alopecians: Be You. The world will adjust!