Bethany Yeiser
CURESZ Foundation President

The Three Stigmas of Schizophrenia

In 2008, when fully recovered from schizophrenia, I was ready to disclose to family, friends and acquaintances about the particulars of my journey through schizophrenia into full and sustained recovery. It was important to me to explain all I had gone through and share that recovery from schizophrenia is indeed possible, thanks to antipsychotic medication. In my case, what brought me into high level sustained recovery and a new life was the only FDA-approved medication for treatment- resistant psychosis.

However, when sharing my journey with new friends at the university, as well as old friends from various periods of my life, I generally received a negative response. People who heard my diagnosis distanced themselves and seemed to act as though I must be dangerous, or erratic, or perhaps no longer trustworthy.

It is my impression that the stigma of brain disorders in general, such as anxiety, bipolar disorder and depression, is improving. When celebrities such as Michael Phelps come out publicly with their stories of recovery, they normalize mental illness and provide insight. Today, bipolar disorder is often associated with creativity, productivity, and artistry. However, I rarely hear anything positive in the media about schizophrenia.

For every story in the media of schizophrenia recovery (and yes, there are some, see 1,2,3,4) there seems to be many others about violence and erratic behavior resulting from psychosis. Notably, these instances of dangerous behavior are generally associated with lack of treatment or noncompliance. Statistics confirm that people in treatment for schizophrenia are no more violent than the general community, yet many in the general public are unaware of this (5).

In 2008, after disclosing my diagnosis and receiving a negative response, I refrained from disclosing to most people. However, this left me feeling alone, like I was living under a shadow. I felt isolated and reluctant to pursue deep and meaningful relationships.

In 2011, following my college graduation, my doctor encouraged me to write my memoir. I published Mind Estranged in 2014, disclosing everything.

Often, I am asked by other people with schizophrenia whether or not they should disclose their illness. I have no single answer for this question, as it is a personal choice. For me, it has been best to connect with others through common interests such as professional aspirations and hobbies, and build trust first. Once a relationship of trust and friendship is established, it is more natural to share medical issues. Certainly, having schizophrenia should not have to be the most important thing about a person’s life.

One of my mentors over the years has been a successful Texas psychiatrist who recovered from schizophrenia and has practiced for decades. She once told me that the people in her life who knew her when she was sick cannot imagine her well. At the same time, the people in her life who know her today, healthy and thriving, cannot imagine her sick. I have found the same to be true in my own life. When I develop strong relationships with others today, I think it is hard for them to imagine me overcome by the devastating symptoms of schizophrenia.

In my experience, I have encountered stigma of schizophrenia at three levels.

First, in the general public, there is a strong tendency to negatively sensationalize and distort schizophrenia. On Halloween in the past, I have found “Gone Mental” holiday costumes in various stores. Some of my friends who advocate for people affected by brain disorders faithfully create petitions to either rename these costumes or get them out of stores. It always amazes me, as you would never see a diabetes costume, or a cancer costume. Yet mental illness is associated with fear, lack of understanding and sensationalism, which is cruel. Stigma in the general public can also lead to a personal stigma experienced in the lives of patients who have the diagnosis.

I have experienced schizophrenia stigma in the general medical community. After recovering from schizophrenia, I contacted an old friend from my undergraduate years. While she had spent four years in medical school, I had not yet finished my undergraduate degree and additionally had spent four years homeless. After she made an effort to find me over social media, I was excited to describe how well I was doing in my full recovery from schizophrenia. I did not expect her response of fear and lack of understanding. After a single phone call where I disclosed, I never heard from her again.

In 2008 prior to my recovery, I saw a family doctor for a routine checkup. When she saw antipsychotic medication in my chart, she told me “You would not need this medication if you hadn’t used drugs!” I told her I had never used drugs. Her comment was judgmental and inappropriate, as many use substances to self-medicate, and substance abuse is in fact known to be a disability.

I have also experienced stigma among psychiatrists. When I was diagnosed in 2007, I was told after about 36 hours in the hospital that I was “permanently and totally disabled.” The doctor did not offer hope for recovery. It seemed that leaving the hospital and being stable enough to even live in the community was the highest goal I could hope for. Unfortunately, subsequent psychiatrists also offered little hope and limited options to recover and rebuild my life.

Fortunately, in 2008, I met Dr. Henry Nasrallah whose thinking was quite the opposite. Dr. Nasrallah researched my life, including my research publications, violin accomplishments, and high grades prior to the onset of my schizophrenia. Subsisting in the community was not good enough for him—he was determined to do anything in his power to get me back to college, back to work and back to meaningful relationships. I owe a debt of gratitude to him for his dedicated care and forward thinking.

He helped me achieve full recovery with clozapine and social support, allowing me to finish my college education and publish a book about my journey of recovery, and then serve as president of the CURESZ Foundation, which we established together in 2016.

When it comes to stigma of schizophrenia, I feel we have a long way to go. However, stories of full recovery (which I hope include my own) prove that today recovery is truly possible.

I am honored to have the opportunity to speak and write about my recovery with hopes that this stigma will greatly diminish over time. As I encounter so many others in full recovery, I am optimistic.

1. Nova Scotian living with schizophrenia shares her story

2. Activism in Mind: Carlos Larrauri is an avid advocate for mental health

3. Elyn Saks: Recovery of a Genius

4. Schizophrenia Survivors

5. Risk factors for violence in serious mental illness