Multiple sclerosis might be the ‘uncanny valley’ of diseases

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.

“Multiple sclerosis.”

A moment of wide-eyed silence followed, then he said, “I’m so sorry. How long are they giving you?”

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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.