“You’re fighting, fighting and fighting. Your friends and parents are around. Then, when the cancer went away, everyone was gone and expected you to be back to normal and do the things you used to do before cancer,” said Starr. “That was the harshest reality.
Read MoreI can celebrate the last day I had to suffer in silence. The opportunity to hurt out loud was my greatest gift. It changed my whole life. I felt like I was saved.
Read MoreTo the Doctor who ignored my Rare Disease because he thought I was drunk,
I don't blame you. I get it. A girl in her mid 20's comes in disoriented with slurred speech and shielding her eyes from the light, obviously assuming she's drunk seems like a pretty good call. It seems like a safe call. Except there was nothing safe about it.
Read MoreOne thing they don’t tell you about rare conditions is that the testing can be grueling. The doctor just wants to make sure they know what you have, so you feel confident that you know what you have. But the tests… the tests can be nothing short of torture. For one of my conditions, I spent overnight in a hospital with an IV so they could inject something and then test my blood. They did this every hour, even when I was “asleep.”
Read MoreI have been hesitant to share this story. I do not want anyone to worry or be upset. I am not looking for pity or sympathy. I am actually not looking for anything. This is more about allowing myself to talk about this so that I can breathe and move forward to heal. It is cathartic for me.
Read MoreBy looking at me, you probably wouldn’t know I’m chronically ill. Growing up, everyone called me Sunshine because I seemed happy all the time. I acted like everything was fine, but hid a lot of pain underneath the laughs and smiles. I didn’t want to be judged or be seen as weak.
