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The Language of MS: Should it Change?

Cancer. No matter where the word is uttered, people know what it means and their faces reflect it.

Multiple sclerosis. No matter where the word is uttered, people have no clue what it means and their blank looks say it all.

In addition to coping with the daily symptoms of multiple sclerosis, the often tiresome disease management required of them, and struggling with the social challenges of fitting themselves into an apathetic, able-bodied world, people with MS also spend energy grumbling about what they deem to be grossly inadequate labels bestowed on the features of the disease.

The prevailing argument is that some labels used to describe MS have been directly borrowed from cancer, terms such as relapse, malignant and benign. Many patients maintain that those terms create a misunderstanding among the able-bodied community about how MS affects the body by conjuring an image of cancer—which is a potentially life-threatening overgrowth of organ cells–as well as being a much more familiar disease that affects a significant portion of the general population and is therefore more often described in documentaries and news reports.

It’s no wonder that MS patients might resent how cancer information has saturated the public consciousness. In March 2015, PBS aired a Barak Goodman documentary titled CANCER: EMPEROR OF ALL MALADIES based on the Pulitzer prize-winning book by Siddhartha Mukherjee, MD, PhD: THE EMPEROR OF ALL MALADIES: A BIOGRAPHY OF CANCER. The series was presented by none other than Ken Burns, the emperor of all American culture documentaries, giving it extra street cred. As though cancer needed the Burns bump in the first place, an MS patient might grumble. The emperor cancer dominates medical research dollars and media coverage. It even provided the ostensibly prime motivation for meek and mild chemistry teacher Walter White to transform himself into notorious drug kingpin Eisenberg in the television series “Breaking Bad.” Why has cancer dominated medicine and its lexicon, and has even become a metaphor for anything insidious, evil, and opportunistic?

A big reason is that cancer’s been around since before the dawn of humankind. It’s been found in fossil dinosaur bones more than 65 million years old. Described as untreatable tumors of the breast—undeniably a description of cancer—cancer in humans has been documented as early as 3000 BCE in the famous Edwin Smith scrolls of ancient Egypt. It was first called carcinoma—meaning crab, referring to the shape of a tumor–by the 4th century BCE Greek physician Hippocrates, and later translated by 2nd century CE Roman physician Celsus into Latin as cancer, which also means crab.

The history of multiple sclerosis has followed a much shorter, circuitous path beginning with Dutch girl St. Lidwina who lived during the Renaissance and whose symptoms were chronicled in a 15th century hagiography (for more info on St. Lidwina and the history of MS, see my article: A Portable History of MS). But the more universally-acknowledged multiple sclerosis case is that of Augustus d’Este, a grandson of King George III who lived during the early 19th century. Unlike cancer, multiple sclerosis has traveled a road filled with numerous misdiagnoses and few documented studies until the relatively recent medical specialty known as neurology began to tease it out from an enormous number of other neurological conditions during the latter half of the 19th century.

So it seems that, historically, cancer is cancer and was never in much danger of being mistaken for anything else. Should that mean its terminology, therefore, ought to be specific and separate from that of other diseases, just as MS should be? Let’s take a closer look at three medical terms and their definitions.

Relapse: The return of a disease or the signs and symptoms of a disease after a period of improvement. Relapse also refers to returning to the use of an addictive substance or behavior, such as cigarette smoking.

Malignant: Cancerous.  Malignant cells can invade and destroy nearby tissue and spread to other parts of the body.

Benign: Not cancerous. Benign tumors may grow larger but do not spread to other parts of the body. Also called nonmalignant.

Of the three, it seems that two—malignant and benign– are specific to cancer. But relapse is rather general and simply means the recurrence of a condition or behavior.

There are some terms specific to multiple sclerosis, too—sort of:

Dawson’s Fingers refers to demyelinating lesions that surround the ventricles. Their shape is indicative and characteristic of MS, and unlike lesions that can form from other diseases.

Uhthoff’s Phenomenon occurs when the core body temp rises causing a worsening of MS symptoms. It is specific to neurological demyelinating diseases. There is some confusion about whether Uhthoff’s Phenomenon is an indication of MS. Some say it can occur without demyelination. However, it’s been known to tip the scales towards MS during diagnostic testing.

So what if we brainstormed some new terms for multiple sclerosis? I had trouble thinking up some serious ones, so I’m afraid these are only comical. (Sorry, this is how my mind works. It’s a burden.)

Epic electrical limb fail: Occurs when a person with MS is standing and suddenly collapses like a marionette from an internal power failure.

Hard face-plant: Falling on one’s face while walking outside on concrete or asphalt. Only happens in urban or suburban settings. See Epic electrical limb fail.

Soft face-plant: Falling on one’s face while walking outside on grass or dirt. Only occurs in natural settings. (Also see Epic electrical limb fail.)

Blacktop glide-foot: Sliding one’s feet across a parking lot in hot weather after being stricken with double foot drop from Uhthoff’s phenomenon sometime between getting out of a car and reaching the store entrance.

I know you can do better. Can you think up some descriptive MS terms that only we experience?1-5

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. NCI Dictionary of Cancer Terms. NIH National Cancer Institute.
  2. The History of Cancer. American Cancer Society.
  3. Orenstein B. A Short History of MS. Published October 17, 2015.
  4. Kabat G. Ken Burns' Magisterial Cancer: The Emperor of All Maladies. Forbes, Science and Technology. Published April 4, 2015.
  5. Dolce K. A Portable History of MS. MultipleSclerosis.net. Published October 27, 2013.

Comments

  • merryb
    3 years ago

    I appreciate the humor as it keeps us alive. I cannot survive MS without laughing, poking fun and snickering at myself. I refuse to disclose to employers and strangers, only on an as-needed basis anything about my MS. I do stand up for myself on reasonable accommodations. I may refer to my “Sea Legs”, walking like a drunken sailor and referring to my fatigue, weakness and drop foot. I

  • Sue
    3 years ago

    Loved these acronyms. How about PF&U. Everytime people with M S see an accessible toilet they need to use it…urgently. By the time they get in, get undressed and situated the need to urinate disappears ( like a phantom). It could also be FU and Pee.

  • itasara
    3 years ago

    Very clever. I wish I were more clover. I enjoyed the article and the comments below. I like to call MS a “condition” rather that a disease. When I think about disease I’m thinking about virus or bacterial. MS may very well be a disease but it is a life long disease like diabetes that requires life long treatment and/or lifestyle changes… so that to me makes it s condition.

  • Kim Dolce moderator author
    3 years ago

    I like how your mind works, itasara. A condition can be anything from an existing circumstance to a rule of wartime surrender put forth by the victor. I like reading dictionary definitions of words that have multiple meanings. It cuts the boredom–which is a condition created by the limitations of our condition. Hey, this is fun! I could do this for hours 🙂

  • zenhead
    3 years ago

    oh, yeah! i love EELF (well, i don’t love it – you know what i mean.) maybe if we start dropping acronyms like that people will have to ask, and give us a chance to talk about it. CFS – crushing fatigue syndrome; CRS – can’t remember shit; DI – digital insubordination, when your fingers and hands don’t do what you want them to. or offer terms like “my hard drive is full.” we need to take back our MS vocabulary!

  • Kim Dolce moderator author
    3 years ago

    LOL, zenhead, love the acronyms for patient-to-patient communication. Maybe they’d be adopted by the medical establishment one day. 🙂

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