The courage to listen – it’s hard to stay strong

After moving country and beginning her PhD, Tasfia’s was diagnosed with MS in Ireland. Five months later Tasfia reflects on her diagnosis journey and shares some words of advice – to listen with courage. She invites others to respond with care when people with MS share their story rather than brushing off difficult experiences.  

‘From initial diagnosis to coming into peace with my MS: It was just six months after I moved to a new country and started my PhD, when a harsh truth gets revealed to me in December 2023, multiple sclerosis. 

It was a random morning; I woke up with a bit of tingling in the fingertip of my right hand. Within 3 weeks, I lost complete strength, grip, movement & motor control of my dominant hand. I was unable to write anything, hold a mug, even make a fist. By the time I was diagnosed, my dominant hand got completely non-functional. I was put onto IV immunosuppressant immediately after my diagnosis. The doctors couldn’t assure me full recovery as it was an acute relapse. Two weeks of hospitalization followed by two months of recovery period, and I have started gradually going back to normal life. 

The next chapter started with my treatment plan in January 2024. I came to know that I am at moderate risk of rapid MS progression. I was advised to go with aggressive form of immunotherapy,  IV infusion, which has more serious side effects like the risk of cancer and fatal PML. I was confused, well mostly scared. So, I had to bring out the science person in me to make the decision of immunotherapy that will be my lifelong buddy from now on.  

To my friends, family, loved ones and working colleagues: 

I don’t expect you to understand what an MS patient goes through. But I would want you to be sensible around a person dealing with MS diagnosis. It’s difficult for me to talk about it, so don’t make my job even more difficult by the way you respond to me.  At least have the courage to face me, to listen to me instead of getting scared and trying to avoid the conversation. Please don’t start telling me how blessed I am while mentioning how things could be worse. I don’t need others telling me how blessed I am, I already acknowledge that myself. Try to understand how hard it must be for me to stay strong all the time. If someday I am unable to control myself, burst into tears and you just don’t know what to say, then please keep your mouth shut rather than saying something that’s just going to hurt me more. 

It’s been 5 months since I got diagnosed. My PhD work is helping me not to remember all the time that I have MS and that’s very much needed for my well-being. I have had this amazing recovery from my acute relapse. I am blessed to be physically functional once again. I am blessed to get all of these extremely expensive medications that are covered by the government.  

But yeah, I am scared. Whenever I hear the word ‘disability’ or see the ‘disability sign’, it freaks me out. But I have faith in science. I am sure with my MS progression; science will also progress to defeat it.’

Our thanks to Tasfia for sharing her MS diagnosis story on the World MS Day map. If you have an MS diagnosis story to share you can add your experience to the World MS Day map.