FacialDifference

Ok this hasn't happened in years but it still bugs me...I'm in the dentist's office to get a consult from the periodontist about my receding gums. I don't know if that is part of my Goldenhars Syndrome. But that's besides the point. He looks at me and says "What happened to you? Do you have a palsy?" At first I'm like What?? Then I remember the facial difference he is referring to and explain what I have and that I have had several surgeries for GS. He then says "Did they not work because they were done at the wrong time?" At that point I say, "what do you mean it didn't work? I can eat, breathe, and speak. How is that not working? " He then dropped it and went on with the consult. This is not the first time I've had this conversation. Nor is it the first time I've had it with a medical professional. Am I the only one who finds it mind boggling that I still have to have this conversation after 50 years??? #GoldenharSyndrome #FacialDifference

...What do you wish people would say instead?

People often call me "disfigured" because of my facial birthmark. But instead of saying I have a facial "disfigurement," I'd rather people say I have a "facial difference." My face is just a little different than the norm, and that's OK. I'm not disfigured, which has such a negative feeling and connotation behind it.

#RareDisease #ChronicIllness #FacialDifference #MentalHealth #Anxiety #Depression #Education #Birthmark #PortWineStainBirthmark