"Talking about MS helped me feel understood”
Niti was diagnosed with MS at 32 while on maternity leave. She shares how one phone call changed everything and how talking helped her come to terms with her diagnosis.
The phone call that changed everything
The conversation I’ll never forget is the one where I was diagnosed.
It was a typical day. My husband was at work, and I was on maternity leave with our six-month-old son. I'd just spent two weeks in hospital having tests and scans after years of strange symptoms. The phone rang.
It was my lovely GP. She said, “Niti, I’m so very sorry to have to tell you, but you have MS”. She’d just received a letter from a neurologist.
As she said those words, I felt numb. I didn’t expect this.
I remember asking, “What does that mean? I don’t even know what MS is.” After that, I didn’t take anything else in. I was zoned out. It was all noise in the background. I ended the call by saying, “Thanks for letting me know.”
Looking back, I would’ve preferred to be told in person. I'd have been expecting some news or an update if I was attending a planned appointment. But the call came completely out of the blue, and I couldn’t prepare myself. That made it even harder to take in.
“What does this mean for my future?”
As soon as I put the phone down, I called my husband. He calmed me down and said we’d talk as soon as he got home. But I was on Google straight away, trying to figure out what MS actually was. I’d heard of it, but I knew nothing about it.
And suddenly I had so many questions.
Would I need to use a wheelchair?
Would I be able to keep up with my son as he grew?
Would I become a burden to my husband?
It took me months to process it all. I was numb. And then, one day, I cried. I cried so much. I felt fear, anger, confusion, and a deep sense of loss.
MS doesn’t affect just one person
It felt like it wasn’t just me who got that phone call. It was my family, too.
My husband had to act as my carer on my very bad days. And my son would see me struggle. I had to be open with him about my condition from an early age. I couldn’t hide it.
But over time, I realised MS didn’t define me. And I wasn’t going to let it define my family either.
I slowly started to see that I could still be the mum who runs, the wife who laughs, and the woman who faces challenges one day at a time.
When people don’t know what to say
When I told my wider family, they didn’t really know how to react. And I think that’s mainly because they didn’t understand what MS was.
So, my advice? Don’t get frustrated when people don’t get it right away. It might take them time.
And if you’re supporting someone with MS, please be patient. Read up on the condition. There’s so much helpful information online.
My own symptoms are invisible. I look fine. So don’t assume someone’s OK just because they look OK.
Connecting through shared experiences
Eventually, I began to accept MS wasn’t going anywhere. It had become a part of me.
I joined online and in-person support groups, which was a turning point. For the first time, I felt truly understood.
I also started writing a blog to share what I was going through. It helped me process things, and it helped my family and friends understand me and MS, too.
The more I speak about my condition and what I go through, the more I’m educating others. And, most importantly, it raises awareness.
If you’re living with MS, my advice is to talk to someone. You’re not alone. It can really help to speak to someone going through something similar. They can understand in a way that others might not.
Yes, I have bad days. But I have good ones too.
It’s helped me to embrace my MS and not be embarrassed to talk about it. Yes, I have bad days when the pain is excruciating, the fatigue kicks in, and I just want to hide and cry.
But I do have good days, too.
By being open about my MS, I’ve become more confident and thicker-skinned. And I feel that the people who want to be there for me are, and that's all that matters.
MS has taught me a strength I didn’t know I had
I’ve learned that exercise really helps me cope, physically and mentally. I wake up at 5am most days and go for a run. If I have an off day, I’ll go for a long walk later.
Having MS has taught me a strength I didn’t know I had. It’s not always easy, but I’m still here.
I’m still running.
I’m still me.
MS Awareness Week
Talking about MS can be difficult, we can help you get started. Visit our MS Awareness Week hub, where we're sharing stories and resources to help you start those all-important conversations.
