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Submitted by PatientsEngage on 25 June 2020
A woman with vitiligo patches on her face in a green dress in a balcony

Urmila Margi, diagnosed with vitiligo as a teenager, says her eye-opening moment was when she met a senior executive at a multinational firm who had vitiligo which made her realise that looks really don’t matter if you prove yourself at your work.

When were you diagnosed with vitiligo?

It was around 15 to 18 years of ago.

How did it affect your daily life?

Initially…yes it did affect my life tremendously as I was just 16 – 18 years old when my vitiligo patches first appeared.

Did you face any social stigmatization?

Yes…even now I face it. But over a period of time, it doesn’t really matter to me because you accept the way things are and get used to it.

Vitiligo can cause significant psychological distress. What kind of support and guidance did you get to come to terms with your condition?

Yes, it does cause a lot of psychological and emotional stress. Your skin is the first thing that gets noticed by another person. The acceptance did not happen overnight. It took me nearly seven years to come to terms with my vitiligo. I had to gone for many sessions of counselling, but they did not work for me. During the last year of college, I happened to join gym and yoga which helped me calm down as I was able to release the anxiety level.

Which was the most challenging phase of your life?

As I said, I was just 16 – 18 years old when my vitiligo had started. That was the time when you are about to join college and you want to be socially accepted by people around you. Infact I remember, when I was around 24 – 25, I was facing many rejections in terms of career, love, relationship, etc. Strangers used to stop on the street and give me suggestions on what I need to do and what I should not do to clear my white patches.Many people would stare at me or rather scan my patches all around which used to make me feel embarrassed. That was a time when I was in depression for almost 8-9 months, lost interest in work, stopped talking to people around.

But one day,when I began working, I was asked to accompany my colleague for a business meeting, I was going to meet my client for the first time. I was surprised to see him because even he had vitiligo. Let me tell you he was working with one of the largest pharmaceutical MNC as HR Director. That really changed my life. It made me think deeply and differently. After that I realised that looks really doesn’t matter if you prove yourself and constantly work on your goals. There is nothing that can stop you.

What were the various types of treatment did you follow for your vitiligo?

Initially I went to the allopath doctor. He told me upfront that what I had was something incurable. That really made me scared. For several months after that, I began having sleepless nights.Then I switched to Ayurvedic medicines for almost four years. It helped a bit as my patches did not increase, but neither did they decrease. At around this time, I developed another problem…I got PCOS (Polycystic ovary syndrome)which began getting severe and needed attention. Later, when could not see any improvement I changed the doctor and went to dermatological centre. I went there for a year and started seeing great results initially.Within the first eight months 80 per cent of my patches had gone, but suddenly the process took a different turn and I started getting patches on different areas, on my palms and legs and it was spreading drastically. I stopped the medication again.I visited some other doctors, but the results were never really encouraging.

Since the last four years I am under the some new medication. But now my goal has changed. It doesn’t matter to me if my patches increase or decrease. 

Have you changed your diet or take any supplements?

Yes..I had been recommended many dietary changes. I had also been told to develop some outdoor hobbies. Hence I started playing squash, and sometimes I cycle or go to the gym. My physical activities keep me active and stress free.

Did you ever face any discrimination at your work place?

At times I did. I have been working for 11 years now. In some of the companies, I felt I was not being given a client facing role or task. I was not given that preference I feel.

Have you joined any vitiligo support group?

Not really, but I am in touch with Aarus Foundation that is working to spread awareness about vitiligo in society.

How can we ensure greater social acceptance of people with vitiligo?

I think today society has become very superficial. They have forgotten that we have to accept people as whole. I think even today most of the public doesn’t know what vitiligo is. It needs to be discussed on public forums, social arenas, seminars, offices - most importantly. For example, we, in India, need to reach that level and acceptance, where the leading vitiligo model - Winnie Harlow talks about her condition freely with no stigma.

Vitiligo can cause low self-esteem and depression in patients. What advice would you like to give others to build their confidence?

Yes, vitiligo causes low self-esteem and depression in patients, but we need to understand and learn that self-introspection is very important. Take up some hobbies, exercise, go out with friends, laugh out loud, express your feelings to someone. Or if you are an introvert, write down your thoughts. This will help release anxiety.

We need to understand that we live in a society where many social stigmas are present. We can try and talk to people but may be cannot remove it completely. The best thing I feel we can do in order to get recognized and achieve success is by focusing on ourselves. So be it studies – get good grade or if you are employed - work on your skills to improve on them, so you achieve success through you merits.

Also, we need to understand that the one who has vitiligo needs to first accept himself/herself.  Remember self-love and respect, confidence is very important. And remember,if you see people judging you on basis of your skin, its ok. Everybody in this world is different and has different understanding about things. Please do not get demotivated because this behaviour of people showcases their character or their way of seeing the world.

So just stay positive and live your life to fullest.