It’s so much more than that
A health care professional recently told me, in reference to my EDS, “Sure it’s nice to have a name for it, but it doesn’t do anything for you. It’s not like you can cure it.” And then changed the subject as if it didn’t matter.
What I wanted to reply with was, “Have you ever experienced having something going on in your body or mind for decades, and have every doctor, nurse, or person around you dismiss you so often that you started to doubt yourself into questioning whether you really are exaggerating, or if everyone experiences what you’re going through and it’s no big deal, or even that you’re making it up?”
“Yet, you really are still experiencing these things. So you research online, but the symptoms are so vague or unusual that you get nowhere with your search. You spend hundreds, if not thousands of hours searching, worrying, and wondering what’s wrong with you and what’s going on.”
“And when you bring it up for the umpteenth time a doctor does sort of believe you, or humors you, but they give you the wrong name, the wrong diagnosis, which kind of fits but not really. But it’s the closest you’ve come to an answer so you go along with it for a while, but a niggling inside keeps telling you this isn’t right. And so you keep searching.”
“Then one day, you randomly run across some bit of information that resonates with you. You chase down more of it with the fury of decades of pent up longing and aggression. Finally, you’ve found something that matches your experience and you have a name for it!”
“You also find out that there’s nothing to be done about it, which sucks, but you have a name for it! You’re not crazy! There are other people in the world like you who experience this, and it’s real, and maybe there’s nothing wrong with any of you, you’re just different. Or even if it is something that you still wish you could make better, you know what’s going on and you know that you’re not crazy, or exaggerating, or making a big deal out of nothing. Such relief!”
“So yes, dear health care professional, it does matter to have a name.”
But I didn’t say any of that. I sat there and let her guide the conversation to other tests and other questions.