How do you describe your multiple sclerosis to others?

Back in spring, I wrote about the fatigue that accompanies multiple sclerosis (MS) and how difficult it was to describe and for others to understand. That’s true, of course, but really, the entirety of MS is difficult to explain. Factor in the variety of symptoms and the individual experience of each person, and the task can feel nearly impossible.

I imagine that’s why we with multiple sclerosis are forced to be creative when describing our ailments. Perhaps the most recognizable example of this tendency is the spoon theory, born from a lupus patient’s spur-of-the-moment need to explain their energy use and availability. The metaphor — that our number of “spoons” drops with a day’s activities, and only so many are available to us to begin with — has helped many of us explain the effects of our chronic diseases.

Another less recognizable example of our creative explanations (probably because we do it without realizing) is when we give our disease human attributes.

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The proper terms are anthropomorphization and personification. There’s a difference between the two, but unless you’re fulfilling a lifelong goal of using both words in a sentence, it’s mostly moot. Be it literal or metaphorical, I use both approaches regularly, and odds are you do it, too. I bet the majority of people with multiple sclerosis describe the disease using human characteristics, such as saying “it’s cruel” or “it’s sneaking up on me.”

Why? Well, there are several good reasons. For one, it can make MS a little easier to understand. Using human traits and emotions can add a certain familiarity to an unfamiliar disease, since humans respond to human characteristics. I almost hate to use the terms because they seem to convey a warmth that I don’t feel toward my primary progressive MS, but anthropomorphizing it does make it relatable.

Professionals do this as well, consciously or not. I’d wager that you can think of plenty of times when a doctor, nurse, or other medical personnel used the characteristics of a person when describing an illness. There’s even some evidence that this anthropomorphizing can increase patient compliance with various therapies.

There’s a negative side, too. (Isn’t there always?) Multiple sclerosis isn’t a person, and you can’t expect it to respond like one — even if describing it and its symptoms in human terms is useful. I’ve caught myself thinking that my MS can’t be that mean because nobody could be, but then had to remind myself that it is, in fact, nobody. Thus, it doesn’t care (human trait) how angry we get at it.

One of the great tragedies of this disease is watching its patients searching for something to lash out at. Sadly, that something often seems to become someone, including those who care.

Don’t worry, I won’t leave you like that. The good of anthropomorphizing or personifying multiple sclerosis far outweighs the bad, in my opinion. There are a few pitfalls to avoid, but the payoff is being better able to raise awareness, even within ourselves. That’s worth relating to, I guess. Just don’t ask me to like it.

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.