Analogies and metaphors, humor and honesty can help explain MS
How I've learned to describe what feels undescribable about my disease
Someone bumped into the footrest of my wheelchair at a crowded venue recently. They immediately stopped and apologized — which doesn’t always happen — and I quickly explained that they’d hit only a part of my chair and not me. This response prompted a pause, a look of concern, and then a question: “Were you able to feel whether your feet had been hit?”
It took me a second to realize what they meant, but I quickly assured them that I could feel my legs and even had some function, just not enough to be useful.
“Oh,” they said, “I thought you were paralyzed or something.”
I chuckled and said, “My wheelchair gives almost everyone that impression, but I actually fall into the ‘or something’ category. This is multiple sclerosis” (MS).
“So are they limp? Does it feel like they’re not there?”
“Not exactly. I can feel everything and they’re definitely there, but it’s like they belong to someone else. Someone who doesn’t like me very much.”
My toolbox to clarify MS
If you’ve read more than one of my columns, you know how often I use analogies, metaphors, and humor to explain this difficult-to-explain disease. I may not have consciously realized it, but those are some of the tools that can make explaining something easier. A list on upjourney.com suggests and elaborates on 27 ways to effectively explain complex topics. I won’t list them all, but I want to highlight a few.
The first suggestion that I thought worthy of sharing is to know your audience. Before I was diagnosed with MS, I barely knew anything about the disease beyond its name. With a few surprising exceptions, most people are just like I was, yet hardly any adult is willing to admit it.
I think that’s why I like answering questions from children. There’s a certain amount of humility when they admit how little they know, and their questions seem to stem from a place of genuine curiosity.
That leads us to the next suggestion I think is important: Start with the big picture and use simple terms when explaining multiple sclerosis or one of its symptoms.
I try to be mindful not to insult anyone’s intelligence, but at the same time, I have to remember that there’s a broad gap between terms I understand and what an average person understands. There’s even a gap between what someone newly diagnosed understands versus someone who’s lived with MS for 10 years. It’s difficult, for example, to explain spasticity to someone. It’s even harder when I start by assuming that people have even heard the word.
Encouraging questions is also important, because I’ve found that even if people are curious, they need to know it’s OK to ask about your condition. I’ve discovered that when I make someone comfortable enough to ask questions, they tend to be comfortable admitting what they don’t know.
I may not be in the mood for questions each and every time, however, so something I have to work on is discouraging questions politely. To me that’s the difference between letting someone know they’re welcome back anytime and slamming the door in their face. (See, I inadvertently slipped into another analogy.)
When answering questions, the list recommends we don’t pretend to be an expert, and I agree. I’m an expert on me and my experiences with MS, but I have to remember that I’m not an expert on anyone else. There’s nothing wrong with stating a fact, but when I do, I must be able to support it with evidence. My fascination with multiple sclerosis might border on obsession, but what I’ve mostly uncovered is how much I don’t know. That can be tough to admit, but it’s true. I therefore try to start my sentences with phrases like “in my opinion,” “I’ve found,” or “I think.”
Lastly — and somewhat appropriately — it’s important to know when to stop. As I said, I’m curious about MS because I feel I should be. What I have to realize is that most people are probably not as interested as I am. There’s nothing wrong with letting my passion show, but I doubt anyone signed up for all my enthusiastic ranting.
If you want, feel free to rant in the comments below, or share a favorite metaphor or analogy you use to explain multiple sclerosis to someone else.
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.
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