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
Does your employer provide workplace accommodations due to your MS?