By Any Other Name Would Your Rare Disease Still Suck?

Never judge a book by it’s cover, or a disease by it’s name. Familial Mediterranean fever is not a chronic longing or fiery passion for the beaches along the coast of Italy.

Familial Mediterranean fever is an illness that can cause inflammation in the stomach, joints, and lungs, which often goes hand in hand with fever—hence the name. “Familial” calls attention to the fact that the disease is inherited, and “Mediterranean” refers to the majority of people who have been diagnosed with it: Jews, Arabs, Greeks, Italians, and others who live along the famous sea.

The problem with misleading disease names is that they make it harder for people to understand. I want to know how many people with Familial Mediterranean fever have been accused of joking. “No, man, c’mon. That isn’t a real disease!” I imagine that can be frustrating.

How about this disease? Castleman’s disease. Kind of sounds cool. I like castles. I like men in castles. But Castleman’s disease has nothing to do with castles or knights or heroes or kings and queens. Castleman’s disease will NOT turn you into a character from Game of Thrones.

I know. Stupid, right? Source:
I know. Stupid, right? Source:

The thing is… it’s impossible for a disease name to reflect the gravity of the disease itself. What’s in a name? A rose by any other name would smell as sweet. Okay, yeah, but we’re not talking about roses here… We’re talking about chronic diseases. As roses are sweet, no matter what name you give a disease, it will always suck and there will always be ignorant people—people who think they know what it’s like to live with, say, Familial Mediterranean fever, or hemophilia, or multiple sclerosis, or diabetes.

I know. It's tragic.
I know. It’s a tragedy. Source:

This is unfortunate, because if there’s one thing a person suffering from a chronic diseases needs outside of a CURE, it’s understanding support.

A disease name will very rarely give an outsider any insight into the amount of suffering a chronic disease patient must undergo; the level of pain they must feel, emotionally and physically; the isolation and loneliness.

So, the next time you meet someone with a chronic disease, don’t make assumptions based on the name. Ask questions and do your own research. And if you HAVE a chronic disease, it’s important to be patient with people trying to learn about your disease—even if they’re asking like, the DUMBEST questions. Got it?

Resources on Familial Mediterranean Fever:

Now it’s your turn! Have you ever been accused of joking when telling someone about your disease? What reactions have you gotten from listeners? Leave a comment below and give your fellow PWer’s some advice on how to respond!

Lady Kehveen Abernathy

Lady Kehveen Abernathy

Lady Kehveen Abernathy, of noble birth (or so she’d like to believe), is what many would call a youthful “old soul.” As a self-proclaimed “caregiver to the world,” impassioned about life, triumph, and all things beauty, Lady Kehveen strives to love others, seek understanding, and most importantly, spread awareness. But don’t let her sweet demeanor deceive you. Dressed to the nines over corset and petticoat, she’s made it her mission to defend the innocent and fight all things evil on this Earth. And being no stranger to chronic disease, she knows exactly where to start.

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