Living with Lupus

The intense physical pain of Lupus is overshadowed only by the frustration of dealing with a disease no one seems to understand.

Photo by Tara Israel | Additional photos by Jessica Bal

As a child, Sandra Bettinger, now 55, was never allowed to use her lupus as an excuse for anything.

On school mornings, if Bettinger was feeling fatigued or simply didn’t want to deal with bullying classmates mocking her swollen body, she would desperately devise a plan to stay home. Standing in front of the air conditioner, shivering, she would hope for little white polyps to form on her tonsils or some other physical signs of her illness to appear.

“Look Ma,” Bettinger would say in their absence, hopeful she could pull off the ruse. “I’m sick.”

But before her mother could answer, her father’s deep voice would boom from her parent’s bedroom: “You are going to school.”

Throughout her childhood, Bettinger says her father challenged her whenever she claimed to feel sick. He learned to identify when her confessed fevers were real and when they were not.

“It’s all in your head,” he’d tell her when he suspected she was lying.