I’ve got a pet peeve when it comes to Non-Marfs discussing Marfan syndrome.

Yesterday morning I came upon a book review through my Google Alerts, where Marfan was the subject. There were many things I took issue with, like the use of the word “disease” (it’s a disorder, a syndrome – not a disease – and even that subtle difference is important), but one in particular stood out. In nearly every paragraph, the author of the post used the words “sufferer” or “victim.”

I find this terminology, particularly when used by someone with no tie to Marfan, to be presumptuous and ableist. How dare they decide how those of us living with Marfan should feel?

Words like those suggest passivity and hopelessness. They paint a picture of people who are “less than,” struggling to eek out a mournful existence. Well, those people with Marfan syndrome ought to be pitied, they must lead such miserable lives. Why should someone who has no idea what it is to live like us get a say in how society views us?

I believe we can only speak for ourselves; I’d never try to say that my views are what everyone else with Marfan believes. But THIS Marf? There’s nothing passive about how I view myself and my relationship with Marfan. Instead, I think of it like a chess match. Ok, Marfan wins this turn in saying that I need to take medication. But, I’ll take his pawn by deciding that I’ll pick the medication that makes me feel the best and allows me to be the most active. Marfan may take my knight by limiting my pregnancy and childbirth options but I’ve got his bishop in figuring out how to build a family anyway. Sometimes the game moves along at an even pace, and sometimes I lose a few turns in a row. It’s not over yet, but you can bet that at the end I’ll be the one proclaiming checkmate.

I didn’t always feel this way, and it’s ok if you don’t either. If you consider yourself a “sufferer of ____,” that’s your prerogative. But whatever you do, don’t let someone else dictate who you are or how you should feel. That’s a power no one should have, particularly someone who has NO idea of what you’re going through.

What do you think? Those of you who have a chronic illness, or a love one with one, are you bothered by this sort of language?