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MS, Stigma and the Asian Community: How I Raise Awareness

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There are certain things that are considered to be “typical” if you’re an Asian growing up in the UK.  “Ideally” you’ll become an accountant, doctor or a lawyer (I’m none of them). You’ll do a degree in something like business, science or maths (nope, nope, nope). You’ll get married and have children (OK, so I have been married, but it didn’t work out and we didn’t have any children). You’ll be able to converse in at least one Asian language fluently (I do it stilted, badly and with a very poor accent!).

I’m Trishna and I’m a first generation British-born Asian. My parents came to the UK as children in the 1950s/1960s. My dad, directly from India. My mum, via Kenya (where she was born).

I’ve been anything but typical all my life, and I suppose the same goes for my health. In 2008, aged 28, I was diagnosed with relapsing multiple sclerosis. Not heart disease or diabetes–which are well known in the Asian community. No, I was diagnosed with something that many Asians have never even heard of. Multiple Sclerosis? Yeh kya hai*?

*Hindi-English translation: “What is this?”

Do Asians even get MS?

Yes we do. Although MS prevalence in the UK is considerably lower in South Asian populations compared to the white population, Asian people do get MS. Obviously. I mean, I have it. And I now know many other Asians who have it. While we don’t know exactly how many UK-based Asians have the condition, I’ve actually heard of cases where patients have been told by their neurologist that “you can’t have MS – you’re Asian!” But a research study has shown that compared with available data in South Asia, MS is several times more prevalent amongst UK-based Asians than those in their ancestral territory.

Being diagnosed with any long term health condition is hard enough within the Asian community (more about that later), but it’s even harder when most people haven’t even heard of what you have. And trying to explain about nerves, myelin and the immune system to someone who may not have English as their first language just adds to the confusion. I don’t even know of the equivalent words for multiple sclerosis in any of the Indian languages and nor does anyone that I’ve asked.

Reactions to MS: From the hurtful to the ridiculous

Some of the comments I’ve heard from Asians about MS have ranged from hilarious to upsetting and everything in between.

  • “It’s your own fault, it’s karma – you must’ve done something bad. You and your family are being punished.”
  • “Multiple sclerosis? I had that at Christmas – just take some antibiotics and you’ll be fine!”
  • “Eat more <insert any Asian spice you like>. That cures everything”
  • “Don’t tell people you have MS – they won’t want to marry into your family!”

When I separated from my husband, so many Asian people I know (it never happened with non-Asians) assumed it was because of my MS (it wasn’t – not at all!).

There are certain things that you need to understand about the Asian community when it comes to chronic illness and disability. It’s not talked about. It’s swept under the carpet. There’s prejudice and stigmatisation. Lots of people hide their MS from the community and sometimes even from their own families. I even know one Asian lady who tells people she had an accident in the gym because somehow it seems to be a more “acceptable” reason for her being in a wheelchair than her having MS. Why is this?

1. Fear of discrimination

In my experience within the Asian community, there’s a feeling that if you have a long term/serious illness and/or disability you should be written off. That you won’t be able to live a full and positive life. If you’re a woman you’re often still expected to be the perfect wife, daughter-in-law, mother, sister, etc. If you’re a man you’re often still expected to be the provider, earn good money and be the “strong” one. Many people in the Asian community believe that MS or other chronic illness will threaten all of those things.

2. Lack of knowledge

Many people in the Asian community generally don’t know what MS is. Even if they do, they may only know one person who has it and that would be their entire understanding of the condition. With this lack of knowledge comes assumptions and misconceptions: it’s contagious, it’s hereditary, you won’t be able to work, you won’t be able to stay independent - all of which are often untrue.

3. Stigma of asking for outside help

If you’re Asian, it can be harder to ask for the care you might need due to your MS because there’s a stigma attached to getting help that “should be” done by the family. The idea that “we don’t talk about our problems outside the family” means that services like counselling, home support or respite care (if necessary) aren’t even considered. This has been made harder because of a breakdown in the traditional Asian way of living with extended family. With the diaspora and modern ways of living, families are much more apart and children want to be independent and live separately. As a result, families can be worn down and struggle because they don’t want the community to think they’re ‘failing’ by accessing outside care.

4. Role reversal

I found it particularly hard to come to terms with needing help from my ageing parents at a time when I felt I should be looking after them. That’s what we’re brought up to do in the Asian community – as our parents grow older, we take on the roles that they provided for us growing up. I’m approaching my 40th birthday, yet my parents still provide me with so much support, none of which I envisaged I’d need at this age.

How have these attitudes and experiences shaped my life with MS?

Facing these types of attitudes and prejudice has made me stronger. I’ve been determined to tackle the issues head on. I encourage people to ask me questions. I’ve written articles and done numerous radio interviews for the Asian press, to help educate and raise awareness. I sit on the Asian MS committee, which is a support group specifically for Asians affected by the condition and which sits under the umbrella of MS Society UK.

But most importantly I’ve been loud, out and proud about my MS and how I’m living life with it. I want to help people understand that having MS shouldn’t be seen as contradictory to Asian “ideals.”  In being so public, I hope that it will put a more human face on the condition, demystify it and help others to seek the support that they might need.

I was recently named “Woman of the Year” at the 18th Asian Achievers Awards and that for me was such an important platform. In a room of over 800 people, the majority Asians, every single person went away knowing about MS and seeing that even though Asians can develop it, we can also lead full and positive lives despite it or even because of it.

That, for me, was the biggest win of all.

Article references:

Ethnicity and prevalence of multiple sclerosis in east London http://journals.sagepub.com/doi/pdf/10.1177/1352458516638746

Asian MS support group (UK-based) https://www.mssociety.org.uk/care-and-support/emotional-support/national-ms-support-groups/asian-ms

UK/MED/18/0271 October 2018