“I know what it is like to lose your grip,” author Susannah Cahalan said. “I have come back intact, and I hope I can share with you the perspective of a patient. I want to offer you a view from the inside of psychosis, hallucinations, and delusions.”
The author of Brain on Fire spoke at the Opening Session of APA’s 2017 Annual Meeting last month, in which she described her experience with anti-NMDA receptor encephalitis, a rare autoimmune condition that mimics the symptoms of psychosis and other mental disorders.
“At the most basic level,” Cahalan said, “I hope I can make you aware of this diagnosis since the vast majority of patients with this disorder will see a psychiatrist before they see another physician.”
Her story is harrowing. In 2009, Cahalan was living the life of an on-the-go young reporter for the New York Post when she fell—actually, “nosedived” might be a better word—into an illness that physicians could not readily identify, though it mimicked in some ways the symptoms of psychosis. After a month in the hospital and a dizzying array of tests that turned up nothing, neurologist Souhel Najjar, M.D. (who is chair of the Department of Neurology at Hofstra University), made the right diagnosis—anti-NMDA receptor encephalitis.
The disorder had been identified only in 2007. A December 7, 2008, report in Lancet Neurology by Josep Dalmau, M.D., and colleagues reported a case series of 100 patients with the disorder. They described it as “a severe form of encephalitis associated with antibodies against NR1–NR2 heteromers of NMDA.” Patients who were treated rapidly with immunotherapy survived.
Cahalan told her story with a writer’s flair and the verve of someone who had come back from a dark place that few have visited. Using videos of herself in the hospital and audio transcripts of conversations with her boyfriend (now husband) who witnessed her disintegration, Cahalan illustrated her descent into florid psychosis.
It began insidiously with odd, eccentric thoughts—an obsession with bedbugs—that progressed into more ominous delusions and erratic behavior (rifling through her boyfriend’s possessions) and finally devolving while in the hospital to a state that mirrored catatonic psychosis.
A review in the New York Times of Cahalan’s 2012 book said, Brain on Fire is at its most captivating when describing the torturous process of how doctors arrived at that diagnosis.” When neurologist Najjar, who was familiar with the 2008 Lancet Neurology article, came to assess Cahalan, he asked her to draw a clock, she said. The image she drew—which she reproduced for the audience—showed a circle with all 12 numbers crowded into one quadrant. That and other clues suggested to the neurologist that she might have the rare autoimmune disorder described by Dalmau.
Najjar would provide the title to Cahalan’s book when he told the author’s anxious family, “Her brain is on fire. Her brain is under attack from her own body.” After rapid treatment with immunotherapy, Cahalan recovered.
Though her baffling condition was bound to be uncovered by a neurologist, Cahalan said her story testifies to the value of clinical skills familiar to psychiatrists. “I believe my story is a triumph of clinical care,” Cahalan said. “It highlights the science but also the art—the art of listening to patients and asking the right questions. Those are the tenets of any great physician.” ■