How multiple sclerosis can complicate casual conversation

Who hasn’t found themselves in the following situation?

A loose acquaintance, or even a total stranger, strikes up a conversation with you, and at first it’s just pleasant small talk. Then there’s the pause. Those of us who have been living with a disability for a while know what’s coming next.

“I don’t mean to sound insensitive, but …”

If life were a movie, this is the part where the music would abruptly stop, giving you time to think, “But I can tell that you’re about to power through it anyway.”

If you’re like me and your face comes with subtitles, people tend to choose their next words carefully. But eventually, they finish the question. “What is … this?”

Recommended Reading

April 18, 2022 News by Lindsey Shapiro, PhD

Active Social Life Linked to Better Physical, Psychological Health

Believe it or not, I would actually be a little relieved if the conversation went that way. I’d be happy to tell them that “this” is multiple sclerosis (MS). And in anticipation of the next question, I’d say that most people with MS don’t look like me. I don’t think the question is insensitive, but perhaps I’d feel differently if the conversation had started with that, or if the question had been, “What’s wrong with you?”

Sure, the inquiry could probably be phrased better, but it’s only natural for someone to want to know why I’m using a wheelchair or a cane, or why I’m limping or getting tired easily. The difference is that I want us to talk like two average people before the subject of my (very visible) disability is broached.

Being treated like anyone else lowers the defenses I started developing when my disease was still invisible. If someone puts me at ease, my defenses go down, and my assertiveness and confidence go up. I go from terse, one-word answers (“fine” is a regular) to talking to the point of exhaustion — for both parties.

People’s attitudes tend to reflect each other’s. I don’t want to be that unapproachable guy in a wheelchair, but giving off an unapproachable vibe is probably the biggest reason why people don’t usually approach me. I think it’s also why people who initiate conversations often start with something they think is polite and harmless, but to me feels like toxic positivity.

He looks grumpy. I better begin with a compliment. Not about the chair, though. “Hey, those are some nice shoes. Must be nice to know that you’ll never wear them out!”

How do I display assertiveness and confidence without appearing arrogant? That’s a very real problem, because many people seem to think that having a disability automatically makes you humble and in need of help and pity. In that case, a confident or self-sufficient attitude can come across as arrogant. Double that (at least) if your disability is invisible.

I want to say that this is the other person’s problem, and I don’t think I’m completely wrong. Still, if I believe their attitude is a reflection of mine, how do I display the right one? What even is the right one?

I genuinely enjoy social interaction and count it as one of the things MS has taken from me, or at least made more difficult. How can I make it less difficult? I’m not sure what I need to do, short of holding a sign that says, “It’s OK to talk to me. We can talk about MS, its symptoms, and research, and I’ll tell you more than you ever wanted to know. We can even talk about wheelchairs and why I’m in one, but let’s not lead with that.”

Maybe what I need is an adjustable MS approachability pin like the social battery ones. Mine would normally be set to green but could change to red in a hurry. I might even start adjusting it while someone is talking to me. Is that rude? Am I the one who needs to worry about coming across as insensitive now?

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.