I was diagnosed with relapsing MS in November 2020, after symptoms which started in May of the same year.
At first I thought my eye problems were a result of increased screen time – it turned out to be optic neuritis. When I first went to the GP she mentioned MS but said they needed to run a lot more tests.
In June I had a lumbar puncture and an MRI scan. The MRI results came back clear, the lumbar puncture was inconclusive and things seemed relatively normal.
But in October I experienced numbness in my left side and over four to five days it spread. I was really scared. I went back to hospital a few times and was referred for another MRI scan. This time the scan showed evidence of MS.
Being told I had MS
It was quite surreal. It was 4pm on a Friday and I was working when I got a phone call from my neurologist. My mum happened to come in the room - it was lucky she was there.
The neurologist was really good and asked ‘do you want to ask questions now or would you like a follow up call?’ I asked what I needed to – I was already feeling pretty certain it was MS. My worry was that it was something much more sinister. Still, I broke down once the call had ended.
Talking about MS to friends and family
I’ve been going through my own process of coming to terms with it and making it a reality. It’s not just happening to me.
On the day I got my diagnosis I rang my Dad and my elder brother and my fiancé, Danny – he’s been a gem.
Most of my family know, but we’ve not told my Grandma, as we don’t want to worry her. English isn’t her first language and I worry how to explain it properly to her.
I’ve told all of my friends and during the lockdown we’ve been keeping in touch. My friend Ayad lives with MS (we met at university) and it was helpful speaking to him as he’d been through the same process. It definitely helped to talk.
It can be hard opening up at work
I was diagnosed a month after starting a new job (in the same organisation as before but a move up). My role is largely project based so I can work from home. My manager was really good when I was with my other team and I got an occupational therapy (OT) referral which led to me getting a screen overlay.
There’s a lot of expectation (which is often self-imposed) and responsibilities. I have to manage my stress, but I’m not the greatest at opening up and telling my manager when I’m struggling.
Speaking up in the South Asian community
I think in the South Asian community we’re not always great at opening up and talking about disabilities, but I do think it’s getting better. I want to try and be open and have made an Instagram to share my experience.
Talking openly about disabilities is still a new thing for the community. I know some women fear how it could affect things like marriage prospects.
The idea also crossed my mind. I asked Danny and my mother-in-law if I was still welcome in the family as I would understand if I wasn’t – they said of course I was! I think Danny was offended that I’d asked.
The impact of MS
I’m still learning to get to grips with it, but I’ve accepted I’ve got it. I’m having treatment – when I go for my DMT (disease modifying therapy) infusion once a month everyone is masked up and socially distanced. It’s so nice to speak to people! After treatment I get really tired and I come home and sleep for the afternoon.
I’m learning how to manage my symptoms. To do this I keep a diary. Fatigue is the biggest thing I have to deal with day-to-day. Until I’d experienced fatigue myself I’d never fully understood it.
Even getting out of bed can be a struggle. When I get really tired my eyes feel tired. Its sometimes difficult working from home and I get random symptoms, like if I have a hot shower my hands go tingly or my knees will be sore.
Some days I have low mood and I think ‘why?’ as I thought so much was going right for me and this came as a real curveball.
Faith, my family, fiancé and friends
The biggest lesson for me is letting go and living in the now. MS is so uncertain and unpredictable and it’s a very humbling thing for me. I like planning and my diagnosis has thrown me.
But I feel more grateful for my faith, my family, fiancé and friends (the four ‘f’s’) I’m definitely learning to be an advocate. I’d love to be able to help people by speaking out and sharing my experience.
This MS Awareness Week (19-25 April 2021) we’re saying #LetsTalkMS.
MS can be tough, and for many people talking about it can be challenging. Help start a conversation about MS – share your story
Ways to talk MS
Our online sessions and webinars are a great way to connect online. You can also join the conversation at Facebook, Instagram and Twitter. And our MS Helpline is here for you, offering emotional support and information.
You can also get in touch with the Asian MS group to find community support.