Multiple sclerosis might be the ‘uncanny valley’ of diseases
How do you define multiple sclerosis? Here's a unique take.
I recall a conversation I had with an acquaintance soon after my diagnosis. I hadn’t progressed to a wheelchair yet, but my limp was noticeable, and he’d heard talk from mutual friends.
“What is it that you have?” he asked.
A moment of wide-eyed silence followed, then he said, “I’m so sorry. How long are they giving you?”
Now it was my turn to be silent until what he meant dawned on me. “Oh! Don’t worry. It’s not fatal, just chronic.”
“Whew, that’s a relief. Well, I hope you get better soon.”
“Um, thanks, but I probably won’t.”
“Why not? What am I missing?”
“Well, the core concept of chronic.”
I’ve discovered that unfortunately, that’s an all-too-common reaction.
Addressing the unease
Multiple sclerosis (MS) isn’t quite a common disease, so I completely understand if someone is unfamiliar with it. I’ll be the first to admit that before my diagnosis, while I’d heard of it, I knew next to nothing about it.
People often don’t like to admit when they don’t know something, so some of the initial confusion and discomfort is probably due to that. Lately, though, I’ve begun to attribute the unease people sometimes feel when they’re introduced to MS to something else: MS might be uncanny.
Odd word choice? Yes, but it was deliberate, and not just because I rarely get to use it in a sentence. I actually wanted to draw a comparison between MS and a phenomenon known as “the uncanny valley.”
The uncanny valley is a theory used to explain the unease people feel when a nonhuman object appears too much like a human. For example, a simple doll can be normal and cute, but a very realistic one seems to cross a line and be creepy. Wax museum figures, computer-animated characters, robots, and (shudder) clowns are others. Almost, but not quite, human can be unsettling for people.
What about almost, but not quite, a typical illness? Most diseases or illnesses fit an understood and familiar pattern. There’s a cause, and the affected person either recovers or they don’t. Multiple sclerosis, like many diseases, doesn’t fit that pattern.
Without a definite beginning (cause) or an end state, we find ourselves — and others see us — in an odd and eerily confusing middle. (Remember when I wrote about liminal spaces?) People accept that there isn’t a cure for MS, but it’s unacceptable to not get better while not getting worse.
I’m not a psychologist, just a guy with progressive MS and too much time on his hands to read about odd things. I’ll leave you today with one of the definitions I read for the word “uncanny”: “Mysteriously unsettling.”
If that doesn’t describe MS, I don’t know what does.
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
christine booth
just have gabapentin is that very good for m s
Benjamin Hofmeister
Hi Christine, I've never been prescribed Gabapentin so I can’t really say. Search this site for more information and opinions.
Thanks for reading.
Ben
TZ
I love how find the perfect words to describe our uncanny and liminal situation. Your fan, T.
TZ
And how my MS needs and editor and proofreader...
Benjamin Hofmeister
Thanks, but they’re really imperfect words for an imperfect disease come up with by a guy without much else to think about. Lol
Lorraine Alexander
Oh, but isn't there still SO MUCH to think about? I don't detect in your article any serious cognitive issues, at all. So shy would you have little to think about? More writing perhaps? And of course reading. How to get from point A to B occupies my mind quite a lot. I recently was offered the loan of an electric scooter to drive around the large campus where my mother has lived with dementia for years; it made those visits so much better, far less tiring. Despite a fe encounters with flimsy sheet rock. And don't forget we can think about societal issues, negative (gun violence, racism, climate change, horrific war) and positive (friendship, springtime, our loving pets, dover sole with Sherry cream sauce, lemon meringue pie, the Beatles, Bach, "My Cousin Vinny," which makes me laugh at least once a year, and on and on). I have SPMS and am also, uh, progressing. (Talk about words that puzzle....) Plus I am gaining some weight and...never mind. See what I mean? SO MUCH to think about. Good luck, and enjoy writing.
Benjamin Hofmeister
There certainly is more to think about and I certainly do.
That’s always been a little joke between me and my healthcare team. A comment was made once that I read an awful lot about MS and studies about its causes and possible treatments. I replied that I didn’t have much else to think about since it had my undivided attention.
With my marriage to a wonderful wife, 3 small boys, and life in general, my MS really only occupies a fraction of my thoughts even though it touches everything in some way.
I suppose that's why it's not terribly difficult to find topics to ponder on....so far.
Thanks for the comment. I enjoyed it and provoking it lol.
Ben
Allison Morgan
That’s an apt description of MS - mysteriously unsettling. Gems such as this one have made me a fan of your blog. Looking forward to more.
Benjamin Hofmeister
I wish it wasn't apt, but thanks for the compliment Allison and thanks for reading!
Ben
Sandeep Bhasin
Gabapentin is good for MS
Benjamin Hofmeister
Thanks Sandeep!
Steve Hards
That's an uncannily accurate observation, Ben! For anyone who wants to read more about the fascinating topic of the 'Uncanny Valley', Wikipedia has a great article.
Benjamin Hofmeister
Thanks Steve! I wonder if MS, or any rare, (outside the norm), disease could fall under the disease avoidance or violation of norms origin theories for the uncanny valley? The more I learn the more I find out how little I know.
Ben
Rob
"But you don't look ill." is the line that I often get and my response is that I left my sandwich board at home with a list of symptoms on it. This will now change slightly as I love it when I stumble (pun intended) across articles like this and I will now be using some of what you've written and passing it off as my own!
Be well.
Benjamin Hofmeister
In a twisted way, I'm sort of grateful that my disability is very noticeable. I still get the puzzled looks when people find out it's MS. "But my sister's best friend’s mom knows somebody with that and they just hiked the Appalachian trail." If I don't feel like educating them I just remind them that that wasn't me.
I would be flattered if you felt like anything I wrote was worthy of being passed off as yours.
I'm stealing your pun, by the way.
Ben