When the Words Just Aren’t There: The Challenge of Talking About MS

People with multiple sclerosis often struggle to describe their symptoms

Jamie Hughes avatar

by Jamie Hughes |

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There’s a poignant scene in “Forrest Gump” in which the title character and his best friend, Jenny, walk up to the shack where she was raised (and was raped and abused by her drunken father). She stares at the place for a moment and then begins hurling things at it, including her sandals. Forrest watches it all, slightly stunned, and when she falls to the ground, he sums up the moment perfectly: “Sometimes, I guess there just aren’t enough rocks.”

That’s what life with multiple sclerosis (MS) can feel like sometimes. For instance, there really isn’t a good way to explain what the fatigue feels like. It’s something beyond “normal” tired or even sheer physical exhaustion. You feel it in your mind as well as your body. There’s a heaviness in your limbs and joints, like you’re walking uphill through syrup. But your mind is sluggish, too, and no matter what you try, it simply won’t abate.

There’s no way to explain that helpless feeling to a person who doesn’t have MS. The words simply aren’t there to describe it.

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And that’s just one thing among many. How do we describe what life is like with spasticity, vision problems, and balance issues? Invisible symptoms like brain fog, memory and concentration issues, and a poor attention span are even harder to pin down with words. There is simply no way we can make others understand our pain, fear, or even our hope.

Nor can we correct all the misconceptions that are out there. (Some interesting points about this were made on MS News Today’s Facebook page that are well worth checking out.)

Yes, we should share our thoughts and feelings openly with those we love and trust. We have to learn how best to speak to the doctors and caregivers we rely upon for support. And we have to be proactive and our own best advocate in social situations with friends and associates, which can be awkward at times.

All of that takes work and must be done, but I’m coming to learn that sometimes — oftentimes — words will fail us. They’ll fall short. The solution in those moments isn’t to continue floundering, to dig through our brains to find that elusive perfect term or phrase.

I recently read “Minor Feelings” by the gifted poet and essayist Cathy Park Hong, and in one of the later chapters, she describes finding her voice as a poet. The explanation stuck with me. She writes, “The circuits of a poetic form are not charged on what you say, but what you hold back. The poem is a net that catches the stutters, the hesitations rather than the perfectly formed phrase. Attention to silence is itself an interrogation.”

Yes, sometimes there is no such thing as a “perfect” word. There are days when what we’re feeling and experiencing goes beyond expression. It’s in those moments that we must stop tying ourselves in knots trying to explain and simply allow ourselves to be.

We — not our words — are the explanation. And anyone who cares for us will be willing to put in the work it takes to understand the things our bodies are saying without speaking a single syllable.

Perhaps in our silence, in our holding back, we’ll find a better and truer language. Or maybe we won’t. The fact of the matter is, we don’t owe everyone an explanation when it comes to living with MS. Perhaps allowing ourselves to be silent on the matter is the greatest gift we can give ourselves.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

John Bradley avatar

John Bradley

Really helpful and powerful. Thanks so much for being so open and also highlighting how ok "being silent at times" is.

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Jamie Hughes avatar

Jamie Hughes

Thanks so much for your kind words, John. Yes, I'm a people pleaser by nature, and I've had to tell myself a lot over the last few years that I don't owe anyone a description of how I'm feeling. I need to ask others to respect me and what I'm going through more than I need praise. Be well, my friend.

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Jenny avatar

Jenny

Just beautiful . This takes some thinking ,musing on.

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Jamie Hughes avatar

Jamie Hughes

I'm so glad you liked it, Jenny! Let me know what comes of those musings. :)

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