‘This is God’s way of telling you that you’ve done bad things in this or a former life. You’re being punished for your sins.’
These were a family member’s words when my mum told them that I had been diagnosed with multiple sclerosis (MS).
They could have asked how I was, how were we all coping, or what impact this was having on us all. But they didn’t.
One of the so-called ‘sins’ was mum and dad having a love marriage that was outside of caste, in an era when arranged marriages were the acceptable thing to do.
During a time that was already incredibly hard, that conversation made us feel completely unsupported and stigmatised. And for this response to have come from a family member made it even worse, as they’re the very people we most needed to be positive and supportive.
But instead, we were made to feel that the diagnosis was somehow our own fault. This experience isn’t unusual. Misunderstanding and ignorance of disability is common in the South Asian community.
Over 130,000 people live with MS in the UK. It’s a neurological condition causing damage to the coating that protects our nerves.
No one knows for sure why people get it. It’s likely to be a mix of genes, things in your environment – like vitamin D levels, and lifestyle factors like smoking – something I’ve never done.
Like many people, I was diagnosed in my late 20s, after experiencing symptoms that included going completely numb down one side of my body, extreme fatigue, muscle spasms and other sensory issues like pins and needles.
Initially I dismissed the symptoms, thinking it would be something simple, like a pinched nerve. I eventually went to my GP thinking they would say my symptoms would disappear on their own and that would be the end of it.
My cousin had been diagnosed with the condition the previous year, which prompted my GP to quickly refer me to a neurologist. So MS came into the conversation very early, but I worried that it might have been a brain or spinal tumour.
When the diagnosis was finally confirmed, I felt relief that I was no longer in limbo.
I knew what we were dealing with and I could start to do something about it, but I was scared for the future. I asked my neurologist for a prognosis and he couldn’t give me one.
There was no way to predict what it would do or how it would affect me. I found that really difficult to come to terms with because I like to know what’s happening.
On top of this, I thought I would play a part in looking after my parents as they grew older, which is expected in my culture. But as my parents started to age, I was coping with this new diagnosis and everything that came along with it.
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I had to adapt how I worked – I started working from home and had more flexible working hours, to manage my fatigue. This meant my career options became more limited, which in turn affected my finances. I became more reliant on my parents for support, not just financially, but also practically – when travelling and doing things around the house.
They continued to work well into their 70s, putting off retirement for much longer than any of us anticipated, because they were concerned about the possible financial burden that might come with my increased disability in the future.
I was living with them (and I still do, in my early 40s) and had to rely on them with tasks such as DIY around the house, managing the household paperwork, doing all the everyday chores like cleaning, shopping and laundry. .
I felt like I was becoming a burden, even though I’ve never experienced stigma from my immediate family – they never saw me this way.
Not everyone in my life has been like this though, with some extended family members, family friends and members of the community reinforcing the idea that somehow I was ‘failing’ for being unable to live up to some of these cultural ideals.
Because, on top of my own feelings of guilt of becoming more dependent on my family, among South Asians I’ve experienced a blame culture around illness. Being told that it’s karma, and my family’s done something bad in a former life, is distressing.
I’ve had people tell me that I shouldn’t discuss my condition openly because it will affect relationship prospects and my family’s reputation. They’ve told me they’re scared of ‘catching MS’ because they think it’s contagious. Conversely, other people have brushed it off as ‘nothing’ and said that I’m making a big deal out of something ‘they had at Christmas and were cured with some antibiotics.’
The lack of awareness still astounds me.
About a year or so after my diagnosis, while attending an MS Society event I was told by a staff member about the support group: Asian MS. My mum and I decided to go along to a session they were running, and we had this instant feeling of ‘oh my goodness, these people just get it!’
With Asian MS, there were cultural references beyond my disability that I could talk and laugh about – like Bollywood movies. Being part of the group really helped me process everything that was going on. I felt like I finally had a network of people who understood me.
I now volunteer with Asian MS. The group, which is completely free to join, provides culturally sensitive support, which addresses the particular nuances to being Asian and having the condition.
We can direct people to information in different languages, and help people explain their condition to family members.
This might include explaining the mechanics of MS – that it affects the brain but isn’t a mental health condition, for instance.
Some of the main issues we hear regularly include being able to explain it to family members who don’t speak English, trying to improve understanding of what causes the condition and the specific symptoms, and requests to connect with other Asians within the MS community.
I’d like to see greater visibility in the Asian media for the South Asian disabled community, so that disability becomes more normalised and we can open up these conversations more.
Representation and inclusion are also really important when it comes to research, which ultimately breaks down barriers.
The MS Society has committed to raise funds for the ADAMS study, which is investigating how genes impact the chances of getting MS in people from different ethnic backgrounds. It’s a study that I’m participating in and supporting as it will hopefully lead to more research with underrepresented groups.
For me personally, life has become inextricably intertwined with advocacy and patient engagement. So I will continue to do all that I can to advocate for better care, treatment and awareness for people affected by MS generally.
More specifically, I will continue to raise the profile of the condition within the Asian community so that we can break down barriers and improve support.
You can find out more about Asian MS and contact the group here.
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