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In the beginning, Susannah Cahalan was told several different diagnoses. She was told she was simply exhausted, partying and working too hard. Another doctor told her she probably had mononucleosis, and finally, after experiencing a dramatic personality shift and strong hallucinations, doctors were starting to believe she was schizophrenic.
In fact, on paper, she was. Schizophrenia usually develops in women during their twenties. Cahalan was just 24-years-old with symptoms including seeing and hearing things that were not there, disorganized thoughts, and stretches of paranoia or a lack of emotion.
Cahalan would have been sent to a psychiatric ward if it were not for the detrimental seizures she was experiencing, which provided evidence that what was going on was physical rather than mental.
It’s been 43 years since Linda Blair made her debut as the convulsing and terrifyingly possessed Regan in the nightmare-inducing horror movie, “The Exorcist.” The film was an adaptation of a novel of the same name, written a few years earlier by William Peter Blatty–which was inspired by an actual exorcism conducted in the late 1940s.
The story is based off the 1949 case of young “Ronald Doe,” which was documented by a priest named Raymond Bishop and his attempts to exorcize the 13-year-old boy he deemed demonic.
Though most of the articles were faulty and provided different information, they all reported the belief that the boy was possessed by the devil even after admittance to several university hospitals, including Georgetown University and St. Louis University. In other words, the boy was still in need of an exorcism even after being observed by qualified doctors.
The young boy would shout obscenities to his loved ones, speak in incomprehensible sentences, and become extremely violent—once even allegedly tearing through his bed-restraints and stabbing a priest with a loose bedspring. Demonstrations that were strikingly similar to Cahalan.
And like Doe, Cahalan was wrongly diagnosed due to today’s continued lack of understanding and research on the workings of the mind.
People will believe what they want, but even the last priest to witness Doe’s “demonic possession” was apparently found expressing doubts in the possibility of it all, conveying that perhaps the boy had been sexually abused or was suffering from some sort of mental illness.
Whatever was going on with Doe, the situation was not accurately assessed. Misdiagnoses happened very often back in the day—whether someone was found seizing or considered haunted or hallucinating or wrongfully declared schizophrenic, many people went improperly treated.
Even today, 12 million people are misdiagnosed each year. Cahalan existed in that limbo zone by medical practitioners who were bewildered by the amalgamation of symptoms she expressed.
Eventually, doctors began putting the pieces together. A brain disease called “Anti-NMDA Receptor Autoimmune Encephalitis” has very similar indicators to those of patients who would previously be considered possessed by the devil. The disease festers by getting the immune system to attack the brain.
Dr. Rosalyn Moran, assistant professor at Virginia Tech Carillion Research Institute and the Bradley Department of Electrical and Computer Engineering at Virginia Tech, studies neuropsychiatric disorders and explains that Anti-NMDA Receptor Autoimmune Encephalitis can easily be confused as schizophrenia. She explains that schizophrenia and anti-NMDA Receptor Autoimmune Encephalitis tend to share similar symptoms in the beginning.
“It certainly has features of psychosis, but it might also present as a motor disturbance,” Dr. Moran says. “It’s not necessarily a homogenous bunch of symptoms that presents in a patient with this disorder, that’s why it’s difficult to diagnose.”
How the disease is acquired is still unknown, however there are some theories. Dr. Moran says that currently the main school of thought is that the illness is ignited from “Teretomas,” which are tumors found in places like the lungs or ovaries. The body’s response to these tumors is to find and destroy something that may resemble an NMDA receptor, or a neural receptor in the brain, within the tumor. However, your immune system might cross the blood brain barrier and start attacking useful NMDA receptors instead.
Dr. Moran also says that often people are diagnosed with the disease and have no signs of tumors. Which means, the disease can be due to an infection or something from the environment that causes the body to react with these antigens.
“The initial insult isn’t exactly well understood, but the tumor is definitely a plausible and well-known feature,” she conveys. “We’re still looking for direct causes that might be environmental.”
Susannah Cahalan, NY Post reporter and author of “Brain On Fire,” is now a survivor of this disease. She recounts to BTRtoday her decline into the sickness and how she thought she was losing her mind. She explains that in the beginning she just felt “off,” becoming extremely paranoid and withdrawn.
“At the time they [friends and family] all thought I was having a nervous breakdown,” Cahalan explains. “I was very manic and depressive and I had my emotions all over the place—it was very scary.”
As she dove further into the illness, Cahalan’s memory became faulty—not being able to recount more than half of the time she spent in the hospital. She was able to rebuild her experience from other’s accounts and hospital security footage. A process she explains as being “an interesting experience from a journalist’s point of view,” even though what she saw and heard was horrific.
“The point where I thought I might be going crazy was when I was very psychotic and started hallucinating,” she says matter of factly.
Though it’s possible for a relapse of the disease, currently Cahalan has regained her normal self after proper diagnosis. She tours the world recounting her story, working towards the aim of enlightening the world about this disease and helping others through it.
“I wish everyone had that and if they don’t have that I wish there were things in place or a medical system that could offer that to people who perhaps don’t have that in the way that I did,” hopes Cahalan.
She now works with a non-profit called the “Autoimmune Encephalitis Alliance,” which works to improve the lives of patients by promoting collaboration in clinical and basic research to provide patients with a much-needed support system.
Cahalan was the 217 patient diagnosed with Anti-NMDA Receptor Autoimmune Encephalitis. Hundreds of people have reached out to her about the disease—some patients, loved one’s of patients, and some people simply curious about the disease.
“It’s so important to have a support system,” she says, “and not everyone has that.”