"Since I was diagnosed with Sjögren’s, I have learned..."
Since being diagnosed, I have learned that people like to see to believe. I was diagnosed at the age of 8. What I remember most vividly is riding the escalator to leave Children's hospital. My mom was relieved, and I was just confused. For my mom, my diagnosis meant that I was going to be ok; for me, my diagnosis was a word I couldn't pronounce.
In retrospect, I don't think I cared about my diagnosis until I went back to school after being out for weeks. Kids asked me, "Where's your cast?" I told them I was sick; they said, "you don't look sick." Half the kids I knew didn't believe me, and the other half treated me like I was more fragile than before. It may seem like I'm exaggerating this situation, but I didn't go to a big school where you saw somebody new every day, I went to a small school where there were 20ish kids in my grade, and everyone knew "Grace is sick. "
I learned to dismiss my symptoms because I didn't want to be seen as attention-seeking. The only place that ever got me was in the ER. I still struggle with this daily which is why I've chosen to be so involved in the foundation. I hope to help others learn not to listen to those who tell you to suck it up and educate those who are saying it.