It's 2009, and a 24-year-old woman is living the dream life — working in New York City as a reporter, spending time with her new boyfriend, hanging out with friends. She starts experiencing minor problems, easily brushed-off issues like feeling off, a new sensitivity to noise, suddenly feeling sad or giddy, slight tingling on one side. After a general check-up shows everything's normal, she goes home to snuggle in for some TV marathons with her guy. She begins seizing up... and it's the last thing she remembers for a month. While that description sounds dramatic enough for some to question if Brain On Fire is a true story, the frightening new neflix movie about a young woman who finds herself a stranger in her own body is entirely true.
New York Post reporter Susannah Cahalan first wrote about her illness once she was able to return to work a few years ago. A story this strange would be a draw for any reporter, but Cahalan had the additional insight of unfortunate first-hand experience. Her piece, "My mysterious lost month of madness", was later expanded into a book, Brain On Fire: My Month Of Madness, and now Netflix has cast Chloë Moretz to play Cahalan in a film adaptation of the story, with Tyler Perry and Jenny Slate as her coworkers, and Carrie-Ann Moss and Richard Armitage as her parents.
The idea a young, seemingly healthy woman could be struck so suddenly by an illness is terrifying in itself, but what's truly unnerving is how close Cahalan came to being misdiagnosed, and what the repeated misdiagnoses reveal about biases against women in the medical industry. After experiencing her fist bout of dramatic emotional shifts, Cahalan took herself to a neurologist, who performed two CAT scans that came up clean. According to her New York Post article, Cahalan said he suggested maybe it was mono, or a virus.
Once she had her seizure, Cahalan said she had to piece together what happened over the next month from interviews with family, friends, and doctors, as she had no memory of what happened. In the film, Cahalan returns to her mother Rhona's house where she has another seizure. The doctor performing the latest MRI advises Rhona that her daughter's been working too hard, partying too much, and not getting enough sleep. If this seems like dramatic license to raise stakes, it isn't - in reality the doctor's dismissive attitude was far worse.
"Even after the seizure and the paranoid delusions, the neurologist didn’t seem worried. “It’s probably alcohol withdrawal,” he told my stunned mother and me. He was convinced I was an alcoholic; I barely drank," Cahalan said in her piece.
It's well-documented at this point women aren't taken as seriously by the medical community, and are often under- and misdiagnosed because of it. With Senate health care cuts slashing budgets and actively attacking women's right to medical access, a woman's chances of finding an accurate diagnosis for anything outside of the normal medical purview are getting even slimmer. Fortunately for Cahalan, her family and boyfriend battled on her behalf, challenging diagnoses of bipolar disorder and schizophrenia and demanding she not be put in a psych ward when she was taken to the hospital.
As Cahalan became more and more withdrawn hope began to dim, until neurologist Dr. Souhel Najjar asked her to draw a clock. Shockingly, all the numbers were crammed on the right side, confirming Dr. Najjar's hunch that the right hemisphere of Cahalan's brain (controlling the left side of her body) was inflamed. Ultimately Cahalan was diagnosed with autoimmune encephalitis, a rare disease where the body's immune system attacks the brain, and whose antibodies were only discovered in 2003.
The Netflix movie ends with Cahalan starting the book that led to the film. In real life, Cahalan is grateful she was properly diagnosed, as Najjar told her that 90 percent of those suffering from hr condition go undiagnosed, as 70 percent of patients see a psychiatrist before a medical doctor. “It’s a death sentence when you’re still alive,” Najjar said in the Post article. “Many are wasting away in a psych ward or a nursing home.” With Brain On Fire on Netflix June 22, hopefully there'll be fewer misdiagnoses in the future.