"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.
Learn more about Sjögren’s in children.
"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.
Learn more about Sjögren’s in children.