When I read Brain on Fire, Susannah Cahalan’s memoir about her experience with psychosis, I became a little obsessed with it. (The Netflix adaptation was disappointing, as the clever hook in the book was her investigating her own illness from an outside perspective, something she could do as she lost most of her memory from when she was sick. The film just follows it straight. But that’s a digression.) Brain on Fire is an extremely readable memoir about a very scary and rare thing that happened to Cahalan. Especially since the extremely rare illness she was diagnosed with—anti-NMDA receptor encephalitis, an autoimmune disease that at the time had only been diagnosed in a couple hundred people, ever—is a kind of disorder that is sometimes called a “great pretender,” meaning it mimics the symptoms of other diseases and is thus hard to diagnose. In this case, Cahalan’s body was attacking her brain, but doctors believed she was mentally ill.
After recovering from her illness, Cahalan became obsessed with what could have been, or the people she began to call her “mirror images.” One woman in particular was diagnosed with the same rare disorder after her doctor attended a lecture that Cahalan gave, but she had been suffering with the condition for years at that point, and even after treatment, would never be able to fully recover as Cahalan was able to, because she was incredibly lucky and diagnosed so early. Cahalan’s life was full of encounters like this now, as talking about mental illness with strangers has become a regular occurrence. When an acquaintance brought up David Rosenhan’s infamous study from the 1970s, where he sent eight “pseudopatients” undercover into psychiatric hospitals to test out psychiatry’s ability to tell the “sane” from the “insane,” and to question the efficacy of psychiatric diagnosis, Cahalan immediately wanted to learn everything she could. Rosenhan’s study became a phenomenon when it was published, crossing over into the mainstream media, and altering the practice of psychiatry in pretty significant ways.
Cahalan began digging into the story, determined to learn about Rosenhan, track the effects of the study, and maybe track down the pseudopatients themselves (they were given pseudonyms in the published paper, which was titled “On Being Sane in Insane Places”). But as she starts her digging, she gradually comes to realize there are enormous holes in the story, and Rosenhan and his study were not what they seemed. I don’t want to say more than that, because it’s fun to watch her chase down clues, and uncover what actually happened.
Cahalan also uses the investigation into the study to look into the history of psychiatry itself. This was one of the main things I’m ambivalent about with the book. At times it felt scattered, as other reviewers have pointed out, she follows a lot of “tangents.” I keep going back and forth about whether those tangents were actually tangents at all, but instead purposeful insights into a greater picture that Cahalan was trying to present. But it was still a little messy and confused in execution; I think I would have appreciated more clarity. But I do think it was a necessity for her to not write about this study in a bubble. You need to know about a lot of it to understand the impact the study had on the field, and why it feels like such an urgent topic still today to Cahalan.
It was very unsettling throughout the book to realize just how much we still don’t know about mental illness, as one psychiatrist she quotes in the books says, all we have are “signs and symptoms,” and though other reviewers have accused Cahalan of an anti-psychiatry bias, I don’t think that’s what’s going on here at all. She’s certainly in favor of psychiatry practices that don’t dehumanize patients, and in favor of science that advances our understanding of the brain and how it works. She’s also not afraid to bring up sticky questions, like how the mental illness stigma often leads to misdiagnosis, and how disorders that have a physical cause in the body are taken so much more seriously than the murkier conditions like bipolar or schizophrenia, or even clinical depression. She definitely is advocating for an approach that eliminates the distinction between a medical diagnosis and a mental one; she argues that mental diagnoses are medical, even if we don’t yet understand the causes. (Her own case is pretty damning; she says the way she was treated was markedly different after she received her medical diagnosis, as compared to how she was treated when doctors thought she might have schizoaffective disorder, or maybe she was just “partying too much.”)
One of the things I found fascinating about the book was that even as Rosenhan’s study exposed flaws in the system, and produced massive change (a new standardized approach to diagnosis in the DSM-III for one thing), it also had massive consequences for the future of institutionalized psychiatry. There was already a growing anti-psychiatry movement in full swing by the time the study was published, one of the reasons it hit so big, and afterwards, many hospitals were closed, and those that are now left are massively underfunded. The need for psychiatric beds, according to Cahalan, is at minimum 95,000 heads in the USA. It is easier to get into Harvard in some cases than to get a bed and treatment when it is needed. Something I didn’t know before this was that JFK’s sister, Rosemary, had a developmental disorder due to oxygen deprivation at birth, and what ended up happening to her was so horrific, JFK decided to devote himself to the idea of ending barbaric practices on patients (like lobotomies) and to promote community care with government funding (a more holistic approach that focuses on humanizing patients). But because he was assassinated, the only part of his plan to be put into effect was the closing of hospitals, and the funding for different types of programs never materialized.
Despite it’s scattered-ness, I’m really glad I read this, and I hope people who can make a difference in our mental health care system will also read it.