What You See: A tall hockey player and star of the school play with a busy social life.
What You Don’t See: Johnnie suffers from an autoimmune disorder called Crohn’s disease .
Third grade was a terrible year for Johnnie. He basically stopped growing. He started throwing up for no reason. He had to go to the bathroom a lot. Worse, doctors couldn’t figure out what was wrong. They even thought it might be cancer, which made Johnnie terrified he was going to die.
Finally, doctors diagnosed him with Crohn’s disease, an autoimmune disorder that attacks the digestive system and makes it impossible to digest many foods. Crohn’s can cause diarrhea, stomach cramping, and extreme fatigue—and living with it can be painful and exhausting. “I’ve had days where getting out of bed is about all I can do for the day,” Johnnie says. To minimize those days, he takes medication and avoids foods that upset his stomach. For him that means no pizza, no birthday cake, no cookies—unless they’re gluten-free.
Johnnie’s adjusted to his new diet—for a while, a close friend ate only foods Johnnie could eat when they were together so Johnnie wouldn’t feel left out. But no matter how careful he is, he still has bad spells. “I can be having a great day, but without warning, I can suddenly be in intense pain or have to stay stuck in a bathroom,” he says.
Johnnie doesn’t let Crohn’s stop him from advocating for others with the disease—he’s even spoken in front of Congress with the Crohn’s and Colitis Foundation about his condition. Personally, he sometimes wishes people were more sympathetic—once, a teacher accused him of pretending to have a stomachache to miss a test.
“I want people to treat me normally, but I also need people to understand that just because I look healthy doesn’t mean I don’t suffer,” he says.