How do you describe your multiple sclerosis to others?
Giving human attributes to our disease can (sometimes) make it relatable
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.
Humanizing MS
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.
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Ralf Wolters
Hi Ben, thanks for your article. In the beginning I used to personalize my MS too. But personally for me this isn't helpful. Just as you said, I found myself confronted with an imaginary super enemy that wouldn't respond to me but arbitrarily giving me relapses and new symptoms. Also this has never been my way of explaining my MS to others. Instead I describe my MS as "aging in time lapse". And I think in my case that pretty much nails it. Comparing my symptoms with the ones of people much older than me makes understanding my situation easier for others. On the other hand it helps me regarding MS as one kind of something that naturally happens to everyone sooner or later.
Benjamin Hofmeister
Thanks for reading and commenting Ralf! I still personalize MS because it makes it easier to describe to others. It's when doing that with myself that I run into trouble because, like you said, I create an imaginary adversary that I can't defeat.
Ben
Dennis Dubber
Descibing MS to others is to say that nerves are a deliver system. So when the mylien or insulation like electrical wire the plastic on the wire is gone, thy short out. The nerves then can not send signal to what every. The signal either gets lost or a spasm in another part of the body. I can not get a signal to my riight leg can not walk and stand as I have no sense of balance.
Benjamin Hofmeister
Hi Dennis! That works right up until the other person stares at you and says, "You mean there are wires in my house?". (I'm only half joking.)
Thanks for the comment. Signals through a wire, slowed by stripped insulation really does work well for most people.
Ben
Lorna Humphreys
There's never going to be one way to describe MS really. But I start with..... saying I have MS gives as much information as saying I have broken a bone! Not a lot, because the damage could be anywhere in my central nervous system so my MS is my MS and not someone else's. How I go on to describe my symptoms has changed over time and even depends who I am talking to.
Benjamin Hofmeister
Thanks Lorna!
Fair warning, I may steal your broken bone comparison. That's a pretty good way to describe MS that nearly everybody can relate to. I tailor my description based on the recipient and their level of interest too.
Great comment,
Ben
Lisa Scroggins
I used to tell my neurologist that fatigue to me felt like paratigue. Sleep didn't help. I would get so "fatigued" that I felt almost paralyzed at times. My husband, a former Blackhawk pilot (who may have flown you around if you were ever posted at Fort Campbell, Bragg/Liberty, or Camp Humphries, South Korea) would say "you've got no go juice," and that works, too. Truthfully, I don't know that anyone who doesn't experience it can really be made to understand. We were on a cruise a couple of weeks ago, and I was riding my admittedly very cool scooter. A man said to me, "I wish I had one of those." Usually I would just smile but that time, what came out of my mouth was, "No, you don't."
Benjamin Hofmeister
Thank you Lisa! I was at all those posts except for S Korea, so at a minimum we bought snacks in the same PX.
https://18disabled.com/wildcats-and-spaghetti/
And you're so right, a person without MS can never really understand. I dislike most of the catchy, feel good, cliches, but there's truth in, "You have to get MS to 'get' MS".
Ben
Betty Simnitt
Thanks for your description of this horrid disease- I am 72 and was not diagnosed until 2014 after a case of Optic Neuritis- the neurologist said that I had likely had it since 2004 - I had to retire after a 35 year career as a Family Nurse Practitioner. I dearly miss my work. I have experienced the “other side” of the patient vs medical systems in a way I have never imagined.
My disease is in the Active Progressive stage, and symptoms are often confused with those of normal aging…..so couple Congestive Heart Failure with degenerative arthritis- and a-fib, and I have the energy of a snail sometimes. And when I feel decent enough to be productive- my off switch gets flipped and I am done. It doesn’t take long.
I get so tired and discouraged that I have times when I wonder why I am still here!
Benjamin Hofmeister
Thanks for the comment Betty. I did rotations at civilian hospitals, but never worked in that capacity. Still being the patient frustrates me sometimes because I realize the provider is just running down the same checklist I learned. It can be irritating when I prepare a whole litany of answers so we can breeze through the list and then we do it anyway. I'm left wondering if they heard anything I said and are just set in their routine. I often want to say, "treat the patient, not the textbook!".