It’s on the Tip of My Tongue
Last updated: April 2023
Most of us probably know the frustration of wracking our brains for the word that was at the tip of our tongue a second ago. It's a pretty common occurrence with or without MS. The struggle is hard to ignore when it happens frequently, even several times a day. Some days, it can feel like it's hard to put even one sentence together correctly.
What is it like forgetting words with MS?
There's always something there to remind me of my MS, but some days it's quiet enough to become background noise. But being stressed or tired brings it back to the front. One of the first indicators I get when I'm fatigued or overworked is trouble finding the right word. It works a bit like a computer that tries to process too much simultaneously, freezes, and stutters out the words you typed 5 seconds ago in chunks.
As it turns out, I'm far from alone in dealing with this symptom. For people with MS, word-finding is a relatively common disease-related symptom. And although it's mostly harmless and even a little funny sometimes, there are certainly ways this symptom makes life a bit more interesting.1
Finding myself in wordless scenarios
Word-finding with MS is my day-to-day personal Wordle. The people who know me well have become accustomed to hearing me become silent mid-sentence, hum and haw, and choosing an ill-fitted word to finish the sentence. Because of this, I've had to expand my vocabulary by working with synonyms. But more on brain hacks later. Luckily, I've found ways to laugh it off, especially when it gets really bad. Like when I forget what I was getting from the kitchen and what it's called. Although I can feel a bit self-conscious, I've found the best way to deal with it is with honesty and a shoulder shrug. Most people chuckle and nod with approval - we've all been there.
The impact on my work
Choosing the appropriate words is a big part of my everyday work. I work with communications, social media, and other writing-heavy tasks. I spend most of my day putting together short, coherent, and informative texts suited for specific audiences. Choosing the right words is essential but, as you can probably imagine, an uphill battle. Writing gives more time to think, so it's easier to manage.
Verbal communication is a much more fast-paced task, and any faux pas becomes more apparent. Presenting an idea, talking to customers, or explaining something to someone new can feel daunting. But I can safely assume that most people overlook my quest for words. As with all the things we can feel self-conscious about, we tend to magnify their importance in our heads — the world, none/barely the wiser.
Using words to express ourselves
Another aspect of choosing the right words has less to do with symptoms and more with making ourselves better understood. The explicitness of words has this incredible capacity to help us with discernment - both for ourselves and others. We tend to have nuanced experiences but boil them down to their most generic state: depressed, exhausted, frustrated, angry.
We (or anyone else) can't do much with that information until it's broken down into smaller pieces. In doing so, we insert meaning by explaining what something is and what it isn't. It's like learning how an engine runs by learning about the individual pieces and how they work together to function. Being deliberate with our wording can be especially helpful when contacting our neurologist or healthcare provider. It paints a fuller and clearer picture of our day-to-day struggles.
My hacks for word-finding
Like any other system, we can hack it. I take full advantage of this when dealing with word-finding. So as I mentioned earlier, I work with synonyms. Word-finding is about finding the word, not the meaning. Identifying words with similar meanings can speed things up or jog the brain back into focus. Knowing a second language can also be tremendously helpful (albeit not the most time-effective option) and has a similar effect to synonyms. Googling, "what's that thing that looks like x and sounds like y?" has helped me more than once. But my favorite is to ask people for help. A friend of mine once said, "I love it when you ask me to help you remember words. It makes me feel like a detective."
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