How being Asian has affected my experience of living with multiple sclerosis

Multi-award winning health and disability advocate Trishna Bharadia blogs about her experiences of MS as someone from the South Asian community.

If you have Asian heritage, like I do, diabetes and heart disease are well-known and understood within the community. People know that diabetes is the “sugar illness” and that heart disease means maybe cutting down on the ghee* and exercising more. Multiple sclerosis (MS), however, isn’t well known. In fact, in my experience many people in the Asian community haven’t even heard of it. 
*clarified butter used a lot in Asian cooking

I’m Trishna Bharadia. I’m a first-generation British-born south Asian. My parents emigrated to the UK in the 1950s and 1960s; my Dad at the age of 14 directly from Punjab in northern India and my Mum, aged 7, indirectly from Gujerat (western India) via Kenya, where she was born. I am also someone living with MS. I was diagnosed with relapsing MS in 2008, aged 28, and the most typical response I’ve had from other Asians when I’ve told them has been “I’ve never heard of MS. I don’t know what that is.”

Whilst, the prevalence of MS in the UK is lower among South Asians compared with the white population, Asians can and do develop MS. Of course we do. I have it! And since my diagnosis I’ve met many other Asians who have it. However, I still hear stories from Asians with MS who were told by their neurologist that “it couldn’t possibly be MS” because “Asians don’t get MS.” In fact, I once had a conversation with a GP who told me that when they were being taught about MS in medical school, they were told to look out for “young white women with eye problems.” This lack of awareness that MS is a condition that affects the Asian community can mean delays in diagnosis and treatment.

When people haven’t even heard of the condition that you have, it can become even harder to cope with a diagnosis. I’ve had problems trying to explain the science behind MS to my relatives, even if they do speak English. If they don’t, it becomes even harder. I find myself trying to look for words for immune system, myelin and nerves in a language that I don’t speak very well at the best of times. It adds to confusion and misunderstanding. Some terminologies don’t even appear to have an equivalent in any of the Asian languages, despite me having asked many people.

This can lead to upsetting and sometimes plain ridiculous reactions from other Asians about my diagnosis. “Don’t tell people you have MS – nobody will want to marry you,” “Not to worry – turmeric is great for the immune system – you’re Asian, you already eat plenty of that”, “Multiple sclerosis? I had that at Christmas – just take some antibiotics and you’ll be fine!” “It’s karma – getting MS is your own fault, you must’ve done something bad in this/a previous life and now you/your family are being punished.” These are all things that Asian people have said to me at some point since my diagnosis. I even remember having a lengthy conversation with one Asian person, trying to get them to understand that MS wasn’t a sexually transmitted disease! And when my husband and I divorced, a common assumption by people in the Asian community was that it was because of my MS (it wasn’t at all). I never had that from non-Asians. 

To understand why these reactions are commonplace, it’s important to know what has traditionally happened within the Asian community when it comes to disability and chronic illness. It’s not talked about. If it is, it’s whispered behind closed doors. Things are kept “within the family” (or sometimes family members aren’t even told for fear of the news “getting out”). There’s a perception that if you live with a chronic illness and/or disability you’re somehow not perfect and won’t be able live a fulfilling life. 

Illness/disability seemingly “threatens” many of the things that are most important to Asian families – being able to get married, have and raise a family, get a good education and/or job, look after your elders etc. People mistakenly think it might be contagious or hereditary, especially if more than one family member has it - which is the case for me (I have an identical twin and two cousins who also have MS). This leads to many people hiding their MS. I know one Asian woman with MS who has always told people she uses a wheelchair because she had an accident in the gym. Somehow that seems more “acceptable” than telling people she has MS. 

All of this can lead to feelings of guilt. I’ve often felt guilty that my parents, in particular, have had to deal with some of the reactions that we’ve had from the community. Don’t get me wrong, there have been people who are supportive, but it’s the negative reactions that tend to have the deepest impact. I and others I’ve spoken to have also felt guilty about the amount of support we’ve needed from our parents or others – we grow up to believe that we would be helping them as they age, not the other way around. 

Having the opportunity to work through these feelings, among all the others that someone can experience following an MS diagnosis, can be difficult if you’re Asian, as there is a cultural stigma attached to asking for outside help. “We don’t talk about our issues outside the family,” and “the family will handle it all” are common phrases that many of us of Asian heritage have heard repeatedly throughout our lives. Consequently, the very idea of respite care, at-home support or counselling are rarely discussed. This is even more difficult considering the move away from the traditional extended family model usually seen in Asian communities. Modern living and diaspora has meant that families are living further away from each other and leading more separate lives. I’ve seen many Asian families struggling because they’ve not wanted to access outside support but are worn down trying to cope. 

The intersectionality of my Asian heritage with my disability and MS diagnosis, has fundamentally shaped me as a person. I became determined to address the issues head on and have deliberately been very public about my life with MS, in a bid to raise awareness, increase understanding, and provide support for others from the Asian community. I want to put not just a human face to MS, but an Asian face to MS. I want people to see that many of the stereotypes and myths that circulate within the Asian community about chronic illness and MS aren’t true. 

So, I do interviews in the mainstream and Asian media. I write articles. I’m a long-standing committee member of Asian MS, a national support group of the MS Society that exists to provide culturally sensitive support to people affected by MS from the Asian community. I’ve connected with MS Society India to better understand the experiences of people there. I’m also active on social media – participating in campaigns such as #desiabled from Chronically Brown, an organisation for Asians living with chronic illness. And hopefully in doing all this I’m encouraging others to seek the support they might need. 

In addition, I’m keen on ensuring better diversity and representation of Asians within MS research. So I work with charities, clinicians and pharmaceutical companies to design and participate in research studies. One recent study, the ADAMS study, which I’ve participated in, is seeking to better understand how genes cause MS in people from different ancestral backgrounds, particularly the Asian and Black communities. 

The world doesn’t change overnight. This will be a slow but hopefully long-lasting shift to improve the experiences of people in the Asian community who are affected by MS in the future. What is of utmost important to me is that we continue to work from within the community and gain support and understanding from outside the community so that we can move forward together. None of us are one-dimensional and lots of factors will influence our approaches to a diagnosis and healthcare. Being Asian has been just one of those factors for me, but an incredibly significant one.

Trishna Bharadia is a multi-award wining health and disability advocate, as well as a patient engagement consultant. She was diagnosed with MS in 2008, aged 28, and works with various organisations, including the MS Trust, to improve the experiences and support of people affected by the condition. Connect with her on social media via Twitter, Facebook, Instagram and YouTube.

South Asian Heritage Month runs from runs from 18 July to 17 August 2022. For more information see southasianheritage.org.uk