Living With An Ostomy In India

SecuriCare blogger Rakhee Patel interviews Mumbai based campaigner and director, Anisha Vijayan, about what it is like to live with a stoma in India.

Interview with Documentary Director, Anisha Vijayan

My interview with the director of India’s ‘The Secret Bag’ campaign

Last week I interviewed Mumbai based campaigner and documentary director, Anisha Vijayan, about what it is like to live with an ostomy in India. Although Anisha doesn’t have a stoma herself, she has created an initiative called ‘The Secret Bag’ to spread awareness of ostomies in India, a country where relatively few people have heard of the concept.

Anisha’s activism has been inspired by her grandmother, who transformed from someone who did not cope well emotionally when she first had a stoma formed, into a woman who has completely accepted and embraced her ostomy. The ultimate aim of The Secret Bag is to film a documentary which looks at what it is like to live with an ostomy and that will provoke some much needed conversation about the topic within the country.

The practicalities of living with a stoma in India

One thing I was really interested to find out was, if there is no NHS in India, where and how do people get their ostomy supplies? It turns out that often the answer is, with great difficulty. In a country with 300,000 registered ostomates, there are only four cities in which one can buy stoma care equipment. This means that those who cannot afford to have their supplies couriered have to travel for hours just to obtain them. Ostomy supplies can be bought from associations linked to hospitals, which offer these products at subsidised prices but these costs are still more than many can easily afford.

Anisha thinks there is a huge need in India for more stoma clinics, specialist nurses and other provisions for those living with ostomies. To convey the magnitude of the struggle, she told me of an incident where an ostomate had a meeting with a health minister to talk about the above issues. The problem was that the minister had never even heard of an ostomy before.

Shame, stigma and secrecy

It became apparent very early into my conversation with Anisha that one of the main emotions that ostomates in India experience is the feeling of shame. “In India, stigmas come and stay,” Anisha tells me. Anything different to the social norm is perceived as something to be ashamed of and it is for this reason that the majority of ostomates keep their stoma a secret, disclosing it only to their closest family members.

Whilst people showing their stoma bags in public is becoming increasingly common in western countries, the same cannot be said in India. If an ostomate is wearing a sari, she will ensure that her pouch is completely hidden by the material folds. Anisha even told me that, although specialist stoma-wear companies have tried to branch out to India, there was very little demand because no one wanted to risk being seen in public buying specialist ostomy clothing.

The marriage conundrum

As you might know, arranged marriages (where a spouse is chosen for an individual by their parents/family members) are still common practice in India. Anisha has observed that most people would rather not have an ostomate marry into the family, meaning that many ostomates in India remain single. However, I am sad to say that the perception that people who have health conditions would not make good daughter/son-in-laws can also be an issue in the British Indian community.

Philosophy, faith and family

One thing that Anisha stressed is the importance of family. “Family is always there for them,” she says. In India, it is very uncommon for people to go to therapists so it is often the case that the relatives of ostomates become their counsellors, their support and maybe their carers. Anisha has also seen many people turn to religion or spirituality to help them deal with the psychological impact of having a stoma. This is definitely something I can relate to, even though I live in the UK.

Hitting home

As an ostomate of Indian origin, listening to Anisha made me think about how very different my life might have been if my grandparents hadn’t emigrated. My interview has given me an even deeper appreciation for the NHS and how it facilitates a better quality of life for ostomates here in the UK. I have also realised how fortunate I am to live in a country where society is becoming increasingly accepting of people who differ from the ‘norm’. UK culture has taught me that I should never fear judgement.

Anisha hopes that her documentary will lessen the burden of shame on ostomates in India because, as we all know, no ostomate should ever feel embarrassed.