MS gets the awareness walks, the celebrity diagnoses, and the medication commercials during primetime.

Lupus at least gets recognized by name. You say NMOSD and the room goes quiet, and then somebody asks “so is that like MS?” and you have to decide in about two seconds how much of yourself you’re willing to spend on the explanation. Most of the time you shorten it. You say it’s similar to MS, or you say it’s an autoimmune thing, or you just say it’s a neurological condition and change the subject, because the full answer takes fifteen minutes and you can already see their eyes starting to drift. And every time you do that, you erase a little bit of your own experience to make it easier for somebody else to digest. That’s the particular loneliness of living with something nobody’s heard of. It’s not just that people don’t understand it. It’s that the world hasn’t given them any reason to try. There’s no ice bucket challenge for NMOSD. There’s no ribbon most people would recognize. There’s no character on a TV show who has it. You Google it and half the results are medical journals written for other doctors, not for the woman who just got the diagnosis and is trying to figure out what her life looks like now. You end up becoming your own awareness campaign, which is exhausting when you’re also trying to be a patient. If you’re living with NMOSD and you’re tired of being the only person in every room who knows what it is, you’re not the only one. You’ve just been made to feel like it. Tell us in the comments what you wish people understood about NMOSD, and tag somebody who needs to see this. #WeAreILLMatic #NMOSD #NMOSDAwareness #BlackWomenWithNMOSD #ChronicIllnessCommunity