Every subculture has its own jargon. Some are great and lots of fun. My favorite is baseball. The terms are so playful and colorful. Frozen rope, dying quail, can of corn, tater, chin music, Mendoza line, high cheese, fungo, rhubarb, and whiffah are just a small selection. Wikipedia lists dozens of such vivid terms. If you don’t know what these refer to, it just means that you aren’t as cool as me.
Music, business, and hobbies of all kinds have their subcultures speaking their own dialects that are impenetrable outside of their secret societies.
MS is no different. We are a subculture as well, albeit not as fortunate as model train enthusiasts or marathoners. As such we employ a patois all our own. It’s not as vibrant as, say, baseball or yachting. Nor is it as flexible. Some baseball words are useful in other circles as well. “Hitting a home run” has connotations far afield of the baseball diamond.
No, MS-ish is not a great language, but it’s ours. What other group drops bombs like “exacerbation” or “myelin” in casual conversation? When is the last time you were at a dinner party and someone brought up the vagaries of clinical trials or the intricacies of MRI’s?
Every now and then I like to lob one of these grenades into an exchange and run for the door. “Man, that guy selling insurance is really getting subcutaneous.” Or “Those Patriots drive me crazy with their relapsing/remitting defense.”
Everyone gets tired, but we “experience fatigue.” That’s so much more impressive. Without missing a beat, we can talk intelligently about optic neuritis, lesions, and steroids or unashamedly about spasms and incontinence. Who else can claim that?
One of the worst features of our vernacular is the lack of uniqueness of the illness’s acronym. Who hasn’t Googled “MS” only to be bombarded with references to Windows, Bill Gates, and back issues of a feminist magazine?
So let’s do what we can to set ourselves apart from the healthy hoi polloi. Don’t be afraid to discuss orthotics and demyelination in mixed company. If you’re bullied by a me-monster spouting about some arcane trivia, ask him his opinion of T-cells and axon repair.
We need to work all the upside of this condition that we can. Talk all you want. If anyone complains, tell them you have ataxia of the mouth.