“Who’s going to marry you? We have to cure your skin condition in order for you to get married.”
“Have you eaten fish and drunk milk together?”
Those are the types of comments Sonam Rajal, 30, has faced because of how she looks.
“It’s frustrating that you have to look a certain way to be loved in the Asian community,” she said.
“A person once said, ‘I’ll pray for you, you’re lucky you don’t have it on your face’.
“I corrected her and said, ‘It’s vitiligo and I do have it on my face, I just have make-up on and, no, I don’t need you to pray for me, thank you very much’.”
Vitiligo is a skin disorder where white patches of skin appear on different parts of the body.
It happens when the immune system attacks the melanocyte cells that make pigment in the skin.
The causes are unclear and while it’s been documented for thousands of years, it can be the source of stigma and shame.
Saran Kohli, 34, said: “There’s an apparent stigma of vitiligo in South Asian communities, mainly because of the lack of understanding and widespread myths that still exist, such as, it’s contagious, it’ll spread quickly and all over your body, it’s caused by eating fish and drinking milk together, consuming too much alcohol or someone’s given you the evil eye.”
He was 16 when he noticed the first white patch beside his eye, just a week before his sister’s wedding.
He received stares and comments from relatives during the wedding but it wasn’t until a month later he found out it was vitiligo.
For years he covered up and lacked self-confidence.
Now he realises there is nothing wrong with him and is helping to educate people around what vitiligo really is.
Saran has created face masks to raise money for The Vitiligo Society.
These masks have prints of uneven skin tones on them. He believes these masks can spark conversations and help people understand what it feels like to look different.
Joti Gata-Aura, 42 was diagnosed with vitiligo at the age of 21.
She says because of the condition – which impacts around 1% of the population and up to 2% of those with Asian skin types – she felt a lot of judgement when she was growing up.
Today, attitudes are changing amongst her generation. There are many people spreading awareness about vitiligo through their own social media platforms.
Joti continued: “Mind-sets are transforming and I believe this is due to awareness and education which is a hugely positive step from when I was diagnosed in 1999. Through the work I am doing more conversations are taking place to normalise vitiligo in the Asian community.”
Diagnosis can happen at all ages. Jasroop Singh was five and found it tough going through school.
Jasroop, now 18, added: “When I went to the Gurdwara [temple] a Sikh older lady once said: ‘Oh my god, you poor thing, you had your whole life ahead of you’.”
‘Stop and stare’
“I can still remember those exact words.
“What many older Asian people do not understand is the fact that this is not an illness.”
She still has days where she would not feel so great herself but she picks herself up.
With supportive family and friends she says she would not have been able to become the confident person that she is today.
Her message: “Make them stop and stare and when they stare – make it worth their while.”
Lisa Bickerstaffe, British Skin Foundation spokesperson, said: “Our aim is to find treatments and cures to help improve the quality of life of people with skin conditions. We believe that education is key to reducing the stigma of skin conditions such as vitiligo, that is why we choose to share stories across our website and social channels.”
Despite there still being a stigma, these young British Asians are hopeful things are slowly changing.