Naturally, most people are unaware of this, as most people are unaware of the existence of FOP. I could say it’s because they’re horrible, self-absorbed people, but we all know that’s not true. There’s uncommon, there’s rare, then about 50 levels below that sits FOP.
What does this mean? If you have FOP, chances are astronomical that at some point you will have to explain the disease to a confused person. (Though I hope with all of my might you never have to explain (and spell) it to an entire emergency room after you’ve cracked your forehead open. That is not a super fun experience.) These people could be anyone: doctors, teachers, classmates, family friends, complete strangers who see you walking around your neighbourhood… In fact, meeting someone who actually knows what it is is almost like finding a needle in a haystack.
Generally, my explanation of the disease depends on the audience. I can’t imagine any doctors will ever hear me use the phrase “evil blood cells” (which, if you’re curious, are white, wear army hats and say “hchhhhh”). You can be and probably should be very serious and scary with doctors, while it’s always good to use some form of humour with friends. As for the random strangers, that tends to depend on how weird they are and how quickly I want out of the conversation.
When it comes to doctors, they tend to have (what I call) the Pavlov reaction. If you’re unaware of the Pavlov experiments, he would ring a bell and give the dogs food. Eventually, whenever the dogs would hear a bell, they’d start to drool. Doctors, when presented with an FOP patient, get a look in their eyes like they’re Pavlov’s dogs and someone just rang a bell.
I am not super fond of this phenomenon.
I suppose, however, it’s a good thing that doctors are so very interested once they’re introduced to the disease. If FOP wasn’t so bizarrely fascinating, maybe we would be one of the countless orphan diseases that are true orphans, with no one looking into the disease.
When it comes to friends, the explanation depends on the age and the closeness. Though I was supposedly teaching classmates how to say Fibrodysplasia Ossificans Progressiva in the playground in grade 2 (I don’t know, maybe we were bored of tag?) I’m guessing my explanation didn’t go much further than the really long name. At that age I’m pretty sure I couldn’t really grasp what the disease is…which is good, because no child should have to carry that terrible knowledge around.
Later high school was when the humour mechanism kicked in. Think about it: You don’t want your friends to pity you. And if you can make the disease sound weirdly funny, it becomes just one of your amusing character traits. I created the aforementioned blood cells and turned myself into an X-Men character (I could produce a lot of bone and my threatening call to my enemies was, “Be careful! I could fall asleep at any minute!”…because I have a really loud snore).
Close friends get told more, of course. Although the serious stuff is still mixed with the humourous anecdotes. So everyone’s sad, then we laugh, then we go get junk food. Life carries on.
Strangers are probably the hardest one. How much do you let these random people know? It depends on the situation obviously. I explained a lot more to the people at the speed dating/FOP fundraiser than the randoms who have stopped me outside and asked me what disease I have. Still, a basic knowledge of the disease is a good thing to give people. It’s important to learn just how strange the human body is or can be. The really long name they’re totally not going to remember and a description of what’s happening are generally what they’re looking for.
And of course there are strangers who should be promptly ignored. People who are rude and gawk and say (profanity alert) “What the fuck’s wrong with you?” don’t deserve to know what FOP is. Walk away and leave them to wonder until they learn some manners.
Now that you know these levels, go forth and test them out. And if you really are someone who accidentally stumbled across this page and have no idea what FOP is, go here before you start telling people what you know.