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.
About the Author
Julia
It seems i'm never ever able to explain ms. At least not what it entails. What it feels like. All the medical mumbojumbo sounds boring, doesn't do justice to the sensations one can have. I always refer to, here it comes; neuropathy- like im being dragged across a gravel road in shorts, like someone lit firecfackers inside my leggs, like iAM the stove, not like i am standing to closecto one.
Fertigo/dizzyness- like trying to stand still on a 5inch square tile after just stopping of the stomach-killer nr1(or whatever rollercoaster) after 6rides straight. Fatigue- when you assess/ scan all benches, little stonewalls, hell even sidewalk curbs for suitable sleepingbag placing.
Ok, last one, brainfogg- when you open the kitchen cupboard to grab a mug of a shelf and the whole damn thing is empty. Nothing. Or when you ask for a napkin and get a ringbinder. (I alway mix them up, Don't ask why, like telephone and tv-set)
I'm going to stop here. You get the picture
O, ps, some dont know what ms stands for. I often say "more sangria" according to my funny walk
Diana Pullos
I think the main problem with telling people about your symptoms, even close friends, is that the severity changes all of the time. A close friend got really cranky with me last week because for the FIRST time ever i cancelled a get together as i was really not physically up to it. (I had been sick and was recovering very very slowly). My transferring to the scooter was getting dangerous. I was telling another friend that i was 'dreading' going and planning all of the steps that i would need to take to make sure i didn't fall or just collapse onto the ground. Once down it is VERY hard to get up. And this friend simply said "Don't go". And i said i can't do that, it's been organised for months. She said you are not up to it. Say NO. And i was so relieved. This was an option that i had never even considered. The other friend is still cranky but i'm so happy that i cancelled. She's known me for 40 years but i try so hard normally that she expected me to just do it this time too. So I may be up to it even as soon as next week but this is the problem with MS....every day can be good or bad. So people looking on must be very confused when Monday i can walk a few steps and transfer easily. On Friday I can't even stand for 3 seconds.
Diana
Benjamin Hofmeister
I about could have written that myself Diane! It took several years after diagnosis to get to a point where I realized that self care is not the same as being selfish or letting other people down. I always have to tell friends that if they force me to come out in my current condition then everyone will suffer.
It's when I expect myself to be happy about the decision, or expect other people not to be disappointed that I run into trouble. Of course they're disappointed. They should be and it's the natural thing to do. If they're truly my friends, they'll understand and that makes the difference.
Ginny Cotterill
"It feels like I'm trying to walk through waist-deep water."
"It feels like I'm wearing cement-filled boots"
"When I first wake up and move, it feels like I'm trying to hatch out of an eggshell."
Benjamin Hofmeister
Those are great Ginny!
I've actually said it feels like I'm moving through wet cement and a good friend of mine says it's like trying to think through concrete.
Lisa Kandel
When people ask how I feel, I tell them it always feel like I'm sick. Kind of like I have the flu. I don't know how else to do it justice. There are actually a lot of times when I see if I have a fever because I'm not sure if it's the MS or really being sick. I call it the MS meltdown. I have the MS hug, burning limbs, numb limbs, and balance issues. And, of course, I'm exhausted a lot. It's like being permanently sick.
Benjamin Hofmeister
I've learned to read people. I haven't mastered it yet, but I'm getting better at telling if somebody really wants to know how I feel or if I can just say I'm fine and leave it at that.
Then if they're genuinely interested, I still have to ponder whether they want a detailed explanation or just a summary LOL
Jessica King
Ben, I love your columns and the topics you bring up. I have lived with MS for 25 years and would love to be in touch with you.
My usual explanation for children and adults in the vicinity is that my brain doesn't talk to my legs, or they speak different languages. I use a scooter, so often little boys from pacifier age to about 8 or so are enthralled. When kids approach, I always try to speak to them directly, while trying to reassure parents that I won't run over the child. When the kids ask questions, I always try to answer them truthfully, even if it's a short answer.
Adults can often guess that I have MS, if they know about it. Others don't realize what it is and some think it is muscular like muscular dystrophy, I try to educate them, but sometimes I feel that it is futile. I really appreciate adults who honestly have interest and ask questions for understanding.
I also have Reynauds (crazy circulation issues in hands and feet), and I once told my neurologist that I was greatful to be able to use my hands to cool myself off. He actually laughed and said that he had never heard that one. What can I say, I am an optimist at heart!?!?!
Benjamin Hofmeister
Thanks for the comment Jessica!
I've found that a lot of the adults don't want to admit that they don't know anything about MS.
Not long after diagnosis a friend overheard me and the group surgeon talking about it.
What do you have?
Multiple sclerosis.
Oh no! How long are they giving you?
Wait what? It's not fatal I'm not going to die!
Oh okay it's like what Michael J Fox has.
No that's Parkinson's. They're really not related.
Oh I know what you mean now. Are you going to try bee sting therapy?
So 5 minutes ago you had no idea what I had and now you feel comfortable enough to suggest alternative Therapies?
MAGDA KAMPOURI
I USUALLY SAY, IMAGINE MS IS LIKE A HOUSE , AND THE ELECTRIC WIRES HAS PROBLEMS BUT YOU DONT REALLY KNOW WHICH WIRE OF ALL. THE RESULT IS THAT SOME PARTS OF THE HOUSE CANOT WORK AND I CANNOT SOMETHING ABOUTE IT. (IN GREEK I SAY IT BETTER)