With multiple sclerosis, there is no short or easy answer

Although it wasn’t his field of study, my father has always been a history buff. On breaks from school, our peers visited theme parks, where they tried out death-defying rides and attempted to eat their own body weight in sugar. My sisters and I, on the other hand, were dragged to historical locations such as battlefields and forced to learn, even while we were on parole from the classroom.

He’d stop at various spots and ask us if we knew what happened there. When we pointed out that such information could be found on the helpful bronze and marble monument nearby, he’d inform us that such markers were for the tourists alone. We debated telling him that we were tourists, albeit unwillingly, but decided to keep our mouths shut and let him give us the entire story.

We’d then learn about how a young lieutenant had sneezed and moved his head just in time to have a musket ball miss it and hit his piece of toast instead. That lieutenant went on to invent the splashless urinal cake based on the shape of this toast, thereby changing public restroom hygiene forever. It wasn’t anything that helped us pass a test, but it was useful information. If nothing else, it taught us to always specify that we wanted the short versus the long answer when asking our father a question.

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The word “buff” implies enjoyment of a particular subject, so I wouldn’t say that I’m a multiple sclerosis (MS) buff. I wouldn’t call myself an expert either, but I do like sharing what I know with anyone who asks. The problem is that I’m in serious danger of also turning people into unwilling tourists when they don’t specify that they only want a short answer.

And the problem with that is that there’s no short answer because MS is very much a long-answer condition. The short answer to why my leg is moving like that, for instance, is to simply reply that it’s spasticity. That would work if everyone knew what spasticity is, but the majority of people don’t. There’s no way around having to explain the symptom and then what I’m doing to combat it. The best I can do is summarize where I can and use metaphors or analogies for the rest.

The problem then is that no one specifies if they want the long answer or the short answer. People who want the short one, or none at all, normally just don’t ask. The ones who do ask usually just want the short answer, but it’s difficult to tell and I have a tendency to want to talk about MS and my family’s life with it. I didn’t realize at the beginning of that life that I’d have to learn how to read people like a poker player just so I wouldn’t bore them to tears.

When being brief is inadequate

Occasionally I get asked how I’m doing, and I usually just say I’m fine. Both I and the person making the inquiry know that I’m not, but in response to this customary question, I offer the customary short answer. It feels a little dishonest, probably to both of us, so I’ve taken to saying that I’m fine “for me.” That may not be the entire answer, but my definition of “fine” is flexible and feels valid as an answer when I can tell that someone just wants me to keep it short.

When I see a doctor or other provider for something that’s not related to MS, I’ve found that they often just want short answers, too. Now, I’d argue that everything in my life is related to MS, so what they get is a short “medical answer,” which would probably be a long answer to anyone else. I can usually skip the analogies around them because they know the definitions of all the big words and symptoms.

Doctors might wish I gave them the short answer sometimes, but the one person who always gets the long answers is my neurologist. He has to deal with all my questions, too, and they’re rarely short. Not everyone does this, especially not random people who are just being polite, but I figure my neurologist bought a ticket to my long questions and answers when he decided to specialize in MS. In my mind, that means he has to stay for the entire show.

If you’ve made it to the end of this column, that means you too decided to stay for the whole show. MS is not a very entertaining plot line, so thank you — and I’m sorry, all at the same time.

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.