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\u2018This is God\u2019s way of telling you that you\u2019ve done bad things in this or a former life.\u202fYou\u2019re being punished for your sins.\u2019<\/p>\n
These were a family member\u2019s words\u202fwhen my mum told them that I had been diagnosed with multiple sclerosis (MS).\u00a0<\/p>\n
They could have\u202fasked\u202fhow I was, how were we all coping, or what impact this was having on us all. But they didn\u2019t.\u00a0<\/p>\n
One of the\u202fso-called \u2018sins\u2019 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.\u00a0<\/p>\n
During a time that was already incredibly hard, that conversation made us feel\u202fcompletely unsupported and stigmatised. And for this response\u202fto have come from a family member made it even worse, as they\u2019re the very people we most needed to be positive and supportive.\u00a0<\/p>\n
But instead, we were made to feel that the diagnosis was somehow our own fault. This experience isn\u2019t unusual. Misunderstanding and ignorance of disability is common in the South Asian community.\u00a0\u00a0<\/p>\n
Over 130,000 people live with MS in the UK. It\u2019s a neurological condition causing damage to the coating that protects our nerves.\u00a0<\/p>\n
No one knows for sure why people get it. It\u2019s likely to be a mix of genes, things in your environment \u2013 like vitamin D levels, and lifestyle factors like smoking \u2013 something I\u2019ve never done.\u00a0<\/p>\n
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.\u00a0<\/p>\n
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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.\u00a0<\/p>\n
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.<\/p>\n
When the diagnosis was finally confirmed, I felt relief that I was no longer in limbo.\u00a0<\/p>\n
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\u2019t give me one.<\/p>\n
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\u2019s happening.<\/p>\n
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.<\/p>\n
Platform is the home of Metro.co.uk’s first-person and opinion pieces, devoted to giving a platform to underheard and underrepresented voices in the media. <\/strong><\/p>\n Find some of our best reads of the week below:<\/p>\n An anonymous writer shares the moment that he realised he was groomed as a 14-year-old by a man in his 30s. <\/p>\n Metro.co.uk’s Josie Copson paid tribute to Wilko, a trip to which accompanied all of her life milestones. <\/p>\n Lowri Llewelyn was attacked while travelling solo through Scotland. She credits a stranger she met at her hostel the day before with saving her life. <\/p>\n And Heidi Crowter describes her perfect first date to her now-husband, James. The couple, who both have Down’s syndrome, instantly realised the other was their soulmate. <\/p>\n I had to adapt how I worked \u2013 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 \u2013 when travelling and doing things around the house.<\/p>\n 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.<\/p>\n 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. .<\/p>\n I felt like I was becoming a burden, even though I\u2019ve never experienced stigma from my immediate family \u2013 they never saw me this way.<\/p>\n 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 \u2018failing\u2019 for being unable to live up to some of these cultural ideals.<\/p>\n Because, on top of my own feelings of guilt of becoming more dependent on my family, among South Asians I\u2019ve experienced\u202fa blame culture around illness. Being told that it\u2019s karma, and my family\u2019s done something bad in a former life,\u202fis distressing.\u00a0<\/p>\n I\u2019ve had people tell me that I shouldn\u2019t discuss my condition openly because it will affect relationship prospects and my family\u2019s reputation. They\u2019ve told me they\u2019re scared of \u2018catching MS\u2019 because they think it\u2019s contagious. Conversely, other people have brushed it off as \u2018nothing\u2019 and said that I\u2019m making a big deal out of something \u2018they had at Christmas and were cured with some antibiotics.\u2019<\/p>\n The lack of awareness still astounds me.\u00a0<\/p>\n About a year or so after my diagnosis, while attending an MS Society event I was told by a staff member\u202fabout 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 \u2018oh my goodness, these people just get it!\u2019\u00a0<\/p>\n With Asian MS, there were cultural references beyond my disability that I could talk and laugh about \u2013 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.\u00a0<\/p>\n 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.<\/p>\n We can direct people to information in different languages, and help people explain their condition to family members.<\/p>\n This might include explaining the mechanics of MS \u2013 that it affects the brain but isn\u2019t a mental health condition, for instance.\u00a0<\/p>\n Some of the main issues we hear regularly include being able to explain it to family members who don\u2019t 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.\u00a0<\/p>\n I\u2019d 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.\u202f\u202f\u00a0<\/p>\n Representation and inclusion are also really important when it comes to research, which ultimately breaks down barriers.\u00a0<\/p>\n The MS Society has committed to raise funds\u202ffor the ADAMS study, which is investigating how genes impact\u202fthe chances\u202fof getting MS in people from different ethnic backgrounds.\u202fIt\u2019s a study that I\u2019m participating in and supporting as it will hopefully lead to more research with underrepresented groups.\u202f\u202f\u00a0<\/p>\n 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.\u00a0<\/p>\n 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.\u202f<\/p>\n<\/p>\n