Spoiler alert for the book Brain on Fire – By Susannah Cahalan.
The following is written for any reader but with special consideration to mental health professionals as the audience.
Imagine that you are a healthy, high-functioning young adult who is successful in your career and relationships. You are bright, capable and confident with a promising future. Then one day you don’t feel like yourself – maybe you’re getting sick. Your energy is low, you’re feeling irritable… it will probably blow over, you rationalize. But it doesn’t. Then over the next week your physical and mental health rapidly deteriorate as you move through symptoms that suggest some combination of a severe mental illness, neurological and physical health conditions.
Now imagine that you are a therapist and this is your client. The individual is presenting with complaints of paranoid ideation, impulsive behaviors, panic attacks, manic episodes, weight loss in past week, and sleep disturbance. She also indicates paranoid delusions and visual hallucinations – none of this can be attributed to recent life events. The client is distrustful, guarded, their speech is pressured and she exhibits mood swings. As a clinician, you may be thinking: r/o psychosis, bipolar or other mood disorders, anxiety disorder, etc. You are probably worried about her safety and developing a plan.
As a reader, you might be thinking “wow, that sounds terrible to be her”, or “glad that’s not me.” Whatever your thoughts, there exists a gap between the aforementioned scenario and yourself as a reader.
But this is what happened to a healthy 24 yo New York Post investigative reporter Susannah Cahalan.
Cahalan wrote an autobiographical account of her month spent in a hospital with a renown team of medical specialists who rotated on and off her case trying to solve the mystery of her diagnosis. Without giving away too much for those of you who want to read the book, Cahalan’s true story offers a glimpse at what millions of people experience when trying to secure a diagnosis. Cahalan’s story also illustrates the desperate situation one finds themselves in when their mental heath rapidly declines without an identifiable cause.
As a psychologist who has worked in college and university settings, I have some experience with severe mental illnesses either through direct clinical contact or consultation with colleagues. Individuals with mental illness will often experience their first episode of the illness while in college, given that onset usually occurs during early adulthood. Protocols differ from setting to setting but, broadly speaking, if an individual is showing signs of mania or psychosis, usually one will assess whether the student needs to be hospitalized, and at minimum a referral for medication intervention is provided. Ongoing therapy with an appropriate provider in the community may also be recommended. Off campus therapy referrals are often provided because campuses are quite busy serving the needs of the student body, which leaves little resources to actually provide ongoing therapy. Thus, as student service professionals, if there is uncertainty that a student can take care of themselves and keep themselves safe, as in the case of Cahalan, parents/guardians may be contacted or the student may be hospitalized to ensure that adequate medical attention is given.
In the case of Cahalan, going to the hospital meant being evaluated by medical doctors who treated her with psychotropic medications to reduce symptoms of psychosis and mania. However, in her case, and in thousands of others like hers, this did not help and her condition continued to worsen. She went from being healthy to catatonic in days. Eventually, when you read the book, you learn of her diagnosis: anti NMDA receptor autoimmune encephalitis, an autoimmune disease (AD). Basically, as Cahalan wrote, her body was attacking her brain. The condition is treatable but thousands with this diagnosis never recover and even die because the medical community has yet to understand that gravity of ADs. These patients are treated for the mental illnesses, which are a symptom of the AD. This is insufficient.
There are anywhere from 80 to 100 types of ADs attributable to genetic and environmental causes. According to National Institutes of Health (NIH), ADs affect approx. 24 million Americans, the majority of whom are women. American Autoimmune Related Diseases Association (AARDA) proposes that the number of ADs is closer to 50 million Americans, and increasing. While not all ADs are as detrimental as Cahalan’s, many of the symptoms affect mental function. As psychologists, when we witness symptoms such as paranoid ideation, memory loss, manic episodes, hallucinations, and other severe vegetative symptoms, we think of medication and therapy as a treatment plan. And sure, at present, it seems like the AD epidemic is new and many factors have yet to be proven as facts. However, Cahalan’s story highlights another fact that many psychiatric patients are misdiagnosed.
For mental heath professionals working with students, it may be prudent to consider AD as a potential rule out when we consider our treatment plans. For instance, in Cahalan’s research for her book, she discovered that many suffering from AD were often first diagnosed with autism or schizophrenia. Although assessing for autoimmune disorders is not in our scope as psychologists, we should learn more about the onset and presentation of symptoms as it relates to ADs in the event that a referral to a AD specialist is indicated. Dr. Souhel Najjar, the doctor who discovered Cahalan’s diagnosis and treated her, stated “We have to keep humble and keep our eyes open.” All of us can learn from this.
More on autoimmune disorders:
More on Susannah Cahalan: