• projectneighbours

Illness is taboo in Asian community

Updated: Jul 9, 2020

I met Trishna Bharadia when she spoke about her experience with multiple sclerosis and advocating for people with chronic illness. Here we talk about cultural nuances in health attitudes and her participation in Britain's Strictly Come Dancing.

My dad moved to the UK from the north of India at fourteen. My mum was born in Kenya; her family had been in East Africa for two generations before many of them came to the UK. She was seven when she moved here.

I currently live in Buckinghamshire and it’s definitely where I call home because of the length of time I’ve lived here, but I have moved around quite a bit. I’ve lived in many places around the UK, and spent some time in the Netherlands and Spain, but Buckinghamshire is where we’ve had a family home for over thirty years.

Competitive hockey

The Netherlands is my second home. We only lived there for two years, but those were very happy, formative years. It was the first time my dad came home consistently at 5.30 pm. We had dinner as a family every day.

It was also where I started playing competitive hockey. We’re a hockey family. My dad’s played since university; he’s almost seventy and he still plays. For as long as I can remember, he'd chop off the tops of his wooden hockey sticks, so we'd have our own little ones.

A part of me

Hockey is in our blood; it’s an intrinsic part of who I am.

Two years ago, I had to give it up because of multiple sclerosis. I was heartbroken.

I was becoming a danger to myself. My muscles were fatiguing quickly; my reactions were slowing down. Two seasons running, I ended up with serious injuries.

Doubt started creeping in, but in hockey, you need to be fearless.

I miss it, though I do Zumba now and adore it. It’s a different form of release to hockey. Not as good at getting out my aggression but i's given me a certain type of confidence and got my body moving in ways that hockey never did.

India's frustrating

I’ve only ever been to India twice and the last time I went, I said to myself, never again! I do find India frustrating. I’m very much the kind of person who likes things being orderly, to run smoothly and on time.

I’m very British when it comes to scheduling. In India, this doesn’t happen; it’s a country that lives by its own rules.

New to Indian history

There were bits of the trips that I enjoyed. When we went sightseeing, we saw landmarks that were very interesting to me.

We were never taught Indian history at school, but I feel that it’s a part of my culture and my heritage that I should know, so seeing these landmarks and learning about them was important.

A lot of my values have come from the Indian influence, like the importance of looking after family. At thirty-eight, I still live with my parents; it’s partly because of my MS, but among Asian communities, it’s not unusual to be in your thirties and living with your parents, particularly if you don’t have a partner.

That’s not a weird thing, though Western cultures see it as slightly strange.

Married for love

My mum and dad married for love, which wasn’t the done thing. They got married in the 1970s and they went through a lot to make it happen.

They were from different parts of India, so both families opposed it.

In those days, you married people from the same area, the same caste, the same religion. My mum and dad broke the mould and I think that influenced their openness to different attitudes.

MS is not karma

With my MS, at no point did my mum and dad ever think that I had it because it was “karma” (i.e. because of something bad that I might have done), which is a common belief within the Asian community.

For them, the diagnosis was very much about, let’s find out what this means; let’s discuss this logically and look for support. My twin also has MS and when either of us met with negative attitudes, our parents were there to defend us.

My mum and dad have always been very clear with people saying, no, it’s not karma, these are the things that can potentially cause MS.

It’s very important to have the older generation in your corner because people, especially their peers, listen to what they’re saying.

Disability is taboo

Illness, particularly chronic illness or disability, is not discussed within the Asian community.

There is an ideal out there; women are expected to be the ideal daughter, wife, mother; men are expected to be the ideal son, brother, breadwinner.

If anything happens that may jeopardise this, we hide it.

As a result, some people postpone going to the doctor’s; they don’t want to risk embarrassment; they worry about shame, about feeling less than perfect, about what their family are going to say.

They don’t report their symptoms, but they also don’t participate in screening.

Knowing little about the body

General knowledge about the body is lacking within the Asian community. Speaking about what’s happening with your own body is very taboo.

People don’t know how the body works or how to recognise when things go wrong.

Some of these things happen in the non-Asian community, too, but it seems that, in the Asian community, it happens a lot more and it can have serious consequences.

I know someone who was diagnosed with MS; her husband told her she wasn’t allowed to start treatment because he wanted to start a family.

Her MS progressed and she ended up in a wheelchair at which point he said, I’m going to divorce you now because you’re no use to me in a wheel chair.

His parents, her in-laws, supported him in this. These attitudes are so ingrained, people think they’re acceptable.

Doctors need cultural sensitivity

We need to help people understand that having a long-term health condition or a disability doesn’t mean their life is over. We have to be proactive and show people that there is another way of doing things; a way that might be more helpful.

We also need doctors to be sensitive to cultural nuances, so they understand what barriers to treatment Asian communities experience; without it, they can’t help their patients.

A dancing role model

More than anything, we need to have more role models to challenge negative perceptions. We need faces that people from the British-Asian community can relate to.

When I did Strictly Come Dancing, one of the things I was immensely proud of was not only that I was a woman with MS showing she can still dance. I was an Asian woman with MS showing what’s possible.

After the show aired, members of my extended family said, I didn’t know this is what MS is and that this is how it affects you. Other Asians contacted me to say that they watched the show with their family and they were able to say, this woman has MS, that’s what I have.

Finally, they were able to talk about it.

When you have a chronic illness, you need support. People often ask me how I manage a full-time job, advocacy work, exercise and rest. The answer is, I don’t do this on my own. As a family, we have each other’s back. This is important to understand; this kind of support, it can make people fly.

Trishna Bharadia is a full-time Spanish language translator for a business information services company. Since being diagnosed with multiple sclerosis in 2008, she has become a multi-award winning advocate for people with MS and chronic illness. She collaborates with numerous national and international organisations to raise awareness and improve support for people with MS, chronic illness and disability through various means, including blogging, vlogging, speaking at national and international events and advising on projects. Trishna is a leading campaigner who has brought hidden disability and chronic illness into the spotlight, highlighting issues faced by people living with these challenges. You can find her on Twitter @TrishnaBharadia.