Nin Sambhi: Living with MS in the Asian Community

Blogs, News

In this guest blog Nin shares her MS journey from diagnosis, to volunteering with Asian MS.

Diagnosis 

I was diagnosed in March 2022. It happened really quickly and was very intense. It only took one week from my first exasperated symptom to my official diagnosis. I didn’t know anyone with MS and knew nothing about the condition. The doctor told me I had MS and sent me home with no information. In a way, I was relieved that the doctor knew what was happening to me, but it didn’t really sink in until that evening. I started Googling and found negative stories. My daughters were four and six, and it was really scary to think about my future as a young woman.  

Living with MS 

My husband has been amazing, he is my rock. After quickly educating himself, he was able to support me and make some instant lifestyle changes to help me through my relapse. 

I’ve still got limited feeling and sensation in parts of my body, including both my arms. My left side is weaker than the right and I experience constant shooting pains. I’ve got so used to it now, my pain threshold is increasing. I started on Tecfidera July 2022, but relapsed in October 2022. I changed onto Ocrevus which is going really well so far.  

I was a full-time teacher at a special needs school, but I’ve changed my job role since being diagnosed. The role required quite a bit of physical strength, but my fatigue and reduced stamina wasn’t up for it. Now, I’m the family liaison at the same school; this was a blessing which may not have presented itself if I hadn’t been diagnosed. Silver linings? 

 The Asian Community 

What I’ve found within the Asian community is that there’s a “hush hush” culture. There’s a culture of being proud and not sharing your business with everyone. There can also be a sort of ‘gossip’ culture; it’s a society which relies a lot on what other people think. People look at you in a certain way when they find out you have a health condition, and they think you’ve done something wrong. There’s also a concern that it will reflect badly on your family. 

Even though I have a very supportive network, it didn’t stop comments such as; “we don’t have to tell anyone, do we?” and “why do people need to know?”. This made me feel like I should be ashamed of what’s happened to me, and my circle is very Westernised. It seemed to me that people within Asian society must pretend that we’re perfect, we can’t talk about our feelings or share too much about our lives. 

I took control of my own narrative; I started my blog (@Invisible_load_of_life) on Instagram, because I didn’t want to shy away or be embarrassed. When you’re truthful from the off set, no one has the opportunity to say things behind your back. There can be a real lack of understanding or education, which is often due to the language barrier. There’s a gender element as well, if you’re a woman there are certain expectations from Asian families. Women are expected to just get on with things, not moan, not rest. From my part, the concern is that when you get married there’s a certain role you need to uphold. However, I’ve created my boundaries and now I tell people, or my husband will tell people, that I need rest. 

 Speaking out through Asian MS 

Life has ways of pushing us. MS has changed me; it’s made me stronger. Now I’m not afraid to speak out, to be open and honest. It takes a lot of strength to talk about MS openly in the Asian community.   

I started volunteering for Asian MS because I wanted to support others, raise awareness, and provide opportunities for members of the community to speak honestly. One way we do this is through our online social group; CHAI & CHAT, which runs once a month on a Friday. EVERYONE is WELCOME to join; whether you have been diagnosed with MS, on the pathway to diagnosis, or a carer, we encourage people to join online and share experiences, within a safe environment. And, as I previously mentioned, although it takes a lot of courage to talk about MS in the Asian community, I think it’s so important to speak out. It’s OK to go against what’s expected of you; keep your head held high within the community, no matter what people say. 

Ethnicity and the UK MS Register 

To understand accurately what experiences people in the UK with MS are having, the UK MS Register needs more non-white participants. The more voices we have the better we can understand whether or not there are any differences in experiences. Currently around 1.5% of participants on the Register are from Asian descent, that’s around 250. 

As we say to all of our participants – there is nothing about you without you. If you have MS or have a loved one with MS and are from an Asian background, please consider joining the UK MS Register if you haven’t already. 

 The next Chai & Chat session is 26th April 2024. Follow Asian MS on social media for more information.