May is EDS Awareness Month
“But Doctor, what you are saying is medically ignorant!”
— Ehlers-Danlos Victim
I wish everyone knew more.
Dealing with the uninformed is a problem. It seems there isn’t proper medical training on how to deal with a medically complex, rare disease patient.
I think there is a lecture missing in medical school. I have summed up here. Take note, Medical Professional.
Patients with a rare genetic disorder will have problems that seem to be medically impossible. See, the cause is the f’d up gene. That is why such phenomenon never happen to people who do not have that genetic error, because it would be, like, impossible! Duh!
And don’t forget that a rare genetic disorder causes an unbelievable mess. That is why the “disorder” word is attached to the “rare genetic” part. Otherwise, it would be just cute and fun that our joints go backwards and that we are so good looking.
Shout out to all you doctors who respect how informed I am on my rare disease.
Shout out to all you doctors who have the guts to type “Ehlers-Danlos” into Google Scholar so my appointment can be productive, not a complete waste of time after which I might ask for my money back because what did I just pay for? Luckily, that breed of dismissive-doctor-dinosaur is dying out. Cheers 🍾 to that!
Let’s here from the real experts, My People, about how our lives are. Let’s learn via the 🍳scellent memes they have made, which floated down my Facebook feed during May, Ehlers-Danlos Awareness Month, in 2018. Thank you to all you soft, flexible, beautiful, funny, always tired, totally not faking Zebras for raising awareness so well. 😘