When words fail
Sarah was diagnosed with relapsing remitting MS in 2015. As a professional writer, she shares how MS, at times, has taken away her words. And how she found a new way to express herself by helping redesign the “I have MS” card.
This MS Awareness Week, Sarah’s story is a reminder that even when words fail us, we can still be heard.
Speaking from experience
I’m a word person. It’s my profession and a passion.
I work in communications and was previously a journalist. I read voraciously, am an enthusiastic member of a book group, and volunteer as a school reader at a local primary school. I connect with people by speaking to them – strangers and loved ones alike – and delight in their stories and experiences.
When I was diagnosed with MS, it didn’t take long for me to realise that words would help me cope with my new normal. By putting things into words, I could help those who loved me to better understand and know how to help.
Talking about MS also proved valuable in the workplace – once I summoned the courage to mention it. If my colleagues and manager understood a little more, they could provide the support I needed to perform at my best.
Losing my words
Just as I found my confidence in talking about MS, it started to steal my words. When the fog of fatigue descended, my words were lost within it. I struggled to process anything said to me and had no chance of finding the words for an appropriate response.
My fatigue fog can last weeks, and it’s amazing how I start to adjust to the silence inside my head. I try to make peace with it and patiently wait for my brain to clear. What is more frustrating, though, is when the words are stolen in an instant, sometimes mid-conversation, in the midst of a busy day.
My daily energy supply doesn’t last as long as it used to. If I have a busy day with lots of people, noise and activities, I run out of juice quickly. And it can happen without much warning.
One minute, I’m chatting, and the next, my brain is completely blank except for one thought: get me away from here, I need to rest.
Unfortunately, I look completely fine, even as my brain and body shut down. My companion might wonder why I’ve stopped speaking. I often need someone’s help to get me to a place of quiet and rest, but I can’t express it. I can’t speak. It’s unpleasant and unnerving whenever it happens. It can feel scary if I’m far from home and surrounded by strangers. I feel vulnerable and incapable of taking care of myself, and I hate that.
Words are small, but when you find just the right ones, they can be mighty.
Saved by the “I have MS” card
The MS Society invariably knows what I need before I do. I was delighted to discover there was an ‘I have MS’ card designed to help in moments just like this. It’s the size of a credit card and has the information to help people know that you have MS and may need additional help. I ordered one immediately.
Recently, the MS Society’s information team contacted me about reviewing a re-design of the card. The design was mostly super, but one phrase jumped out: “I may not speak clearly.” I felt like the words weren’t quite right for a card with limited information.
Yes, sometimes people with MS don’t speak clearly. And the card could help with that.
But it’s even more unfathomable when a person stands mute. If that happens, we MS-ers really need something to help us seek assistance and reassure whoever we’re with that we are not being rude or odd but struggling.
Perhaps the card could say even more and help people in both situations. I suggested we change the phrase to “I might find it hard to talk.” The team liked my suggestion, and you’ll find it printed on the new card (order yours today!).
Words make all the difference
Words might be small, but the right ones can be mighty. When we struggle to find our words, it’s important that our aids are as clear in the message as we would want to be so we can access the support we need.
I hope the words on the new card help support all my fellow MS-ers in their moments of need and vulnerability.
I hope the card gives you the confidence to move through the world as you wish, knowing that there’s something in your pocket that can act like a lifejacket in a moment of storm. We can’t let having MS limit our lives more than it has to.
When my new card arrived in the post, I felt a wave of gratitude towards the MS Society. This collection of people, spend their working hours trying to make life easier for everyone living with MS. From funding pioneering research to creating a small card that makes me feel safe, their efforts mean a great deal.
For these marvellous people, I have two of my best words: Thank you!
MS Awareness Week 2025
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.
We’d like to say thank you in return to Sarah and everyone with MS who helped us create and improve this card. We couldn’t do what we do without our amazing volunteers. Find out more about current opportunities.
