Raise your hand if a doctor’s accused you of pill-seeking? Blamed your symptoms on your weight or claimed you were too young, too black, too old, too Latino to be experiencing what you say?
Or how about this: Raise your hand if you’ve heard this classic dismissal for those of the female-persuasion—
“You’re hysterical.”
I’m assuming there’s a sea of hands up right now, and those hands mark an extremely dangerous reality about stereotypes in healthcare.
Stereotypes and snap judgments hurt, and I’m not just talking about your feelings. In medicine, they can mean the difference between a real diagnosis and a psychologist’s referral.
Which brings us to 15 year-old Sam Fitzgerald and his mother, Jackie Courtney.
Sam Fitzgerald was a typical teenage boy, or at least, that’s what six different general physicians assured his “overly-sensitive” mother. Sure, he’d suddenly transformed into a temperamental, moody, angry young man, and yes, his mother could hardly recognize him, but hey, that’s something that randomly happens to all teenagers, right?
Boys will be boys, and all that.
But Jackie Courtney thought her sweet boy didn’t change because of bullying or teen angst, or any of the reasons doctors threw at her. It was something else.
And when Sam started slurring his words, and his hands and toes curled, she knew it was something serious.
One day, Jackie walked into Sam’s school in frustrated tears, not knowing what else to do. A kind teacher responded with exactly the words Jackie (and anyone else who’s struggled with misdiagnosis) needed to hear:
“If you think something’s wrong, don’t stop until the doctors find something.”
Armed with those words and a note from the school to bring to appointments’, Jackie and Sam found an understanding doctor. Dr. Watson didn’t dismiss Sam as the brooding teenager like so many before her. She saw a boy who was sick and needed her help.
And help’s what Sam finally got.
A blood test soon revealed that Sam wasn’t just a teenager–he was a teenager with Wilson (or Wilson’s) disease, a rare, potentially fatal genetic condition affecting his liver’s ability to metabolize copper.
The copper builds up and poisons organs in the body, including the brain, which creates symptoms like:
- personality changes/mood swings
- problems talking or swallowing
- muscle stiffness
Caught early, people with Wilson disease can actually turn out a-okay with the right treatments and end up with no signs of the disease.
But Sam wasn’t so lucky.
It took 18 months and sixdoctors before Sam got his answer, and by then, he’d become wheelchair bound. He can’t eat or really move. According to his mother, he spends most days in his room, and their only hope rests in deep brain stimulation therapy.
It didn’t have to be this way.
The road to diagnosis is long for many of us, but if doctors could see us as the people we are rather than the people they expect us to be, maybe we could all find a shortcut.
