Mental illness or auto-immune?

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:

http://www.aarda.org/autoimmune-information/questions-and-answers/

http://www.merckmanuals.com/home/immune_disorders/

http://www.niaid.nih.gov/topics/autoimmune/pages/default.aspx

More on Susannah Cahalan:

http://www.susannahcahalan.com/

http://www.npr.org/2012/11/14/165115921/a-young-reporter-chronicles-her-brain-on-fire

https://www.youtube.com/watch?v=gfteHaKj8yc

http://nypost.com/2009/10/04/my-mysterious-lost-month-of-madness/

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4 thoughts on “Mental illness or auto-immune?

  1. O. Salim Thornton says:

    Hi, Dr. Young. I worked in.mental health for 14 years in direct care, supervisory, management. 7 years in a private inpatient psych hospital, and 7 years in a residential treatment center. My last position was developing and implementing respite care, designed to prevent psych hospitalizations for children already in residential care. I have extensive training and experience in crisis intervention and management, acute behavior management, behavior mod, Autism Spectrum Disorder, DBT, ABA, CBT, treatment planning and more. I’ve had the privilige of working and learning under innumerable talented clinicians. Today, i am self employed as a Certified Wellness Coach. I have had clients with AD. Ive become aware a high percentage of AD sufferers carry psychiatric diagnoses. I also work with parents with children who are spectrum. My question is, at what point should a parent (or any caregiver) consider screening for AD. In your opinion, does it make sense to be proactive, and reccomend an AD screening at onset for someone meeting some of the criteria mentioned above? My question is regarding those cases that have that mystery feel? I wonder how many multiple hospitalizations and lengthy RTC referrals could be avoided by virtue of a discovery? I’d like to share this on reddit and a few other places. I look forward to sharing more of your work on my blog, specifically. I believe my readers will enjoy youd work. I am following you.. Your voice is welcome on my blog anytime. Please visit me at
    http://certifiedwellness.wordpress.com

  2. O. Salim Thornton says:

    Reblogged this on Certified Wellness and commented:
    For mental health professionals, parents and Autoimmune Disease sufferers… Dr. Jennifer T. Young provided me with a breakthrough moment this evening. Thank you for sharing Dr. Young, this has been useful.

  3. me says:

    Hi O. Salim, thank you for your comment. You have had extensive experience in the field- congratulations!
    With regard to your question, given that AD patients also exhibit symptoms of mental illness, I think it is prudent to assess and treat the underlying cause. That is, only addressing symptoms of mental illness for a patient with AD is like putting a bandaid on a gaping wound- not effective. If there is an untreated AD, i would definitely recommend referring to an AD specialist.
    Thanks for sharing your blog as well. I look forward to more dialogue.

  4. O. Salim Thornton says:

    I appreciate the response. This past year, I worked with a number of adolescents who received numerous med trials, including Clozaril in the most extreme cases, with no positive effect. It never ocurred to our clinical team to look at AD as a contributor. Im willing to bet we have children with undiagnosed Autoimmune disorders.. Thanks again!

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