My Diagnosis

Every morning I take an oblong white pill, every night I take another of the same oblong white pill. This is what keeps me functioning with fewer hallucinations and delusions. My official diagnosis is schizoaffective disorder, bipolar type. According to the Mayo Clinic, schizoaffective disorder is characterized by a combination of schizophrenia symptoms such as hallucinations (false sensory perceptions such as hearing voices) and delusions (false beliefs and ideas) as well as mood disorder symptoms such as depression and/or mania. While bipolar disorder can be characterized by hallucinations, delusions, and other bizarre experiences that are typical of schizophrenia, these are thought to be different in an individual with schizoaffective disorder because these hallucinations and delusions arise out of a mood disorder. For example, someone might be so depressed that they are convinced they have a serious illness like cancer or someone might be so manic that they are convinced they are omnipotent. Schizoaffective disorder is not well understood and some prominent psychiatrists have posited that those who suffer from schizoaffective disorder suffer not from a combination, but from two separate disorders: schizophrenia and a mood disorder.[ref]Mondimore, Francis Mark. Bipolar Disorder: A Guide for Patients and Families. Baltimore: Johns Hopkins University Press, 1999.[/ref] To be diagnosed with schizoaffective disorder, psychotic symptoms must have occurred for more than two weeks continuously, and must occur when a person is neither manic nor depressed. People with this disorder are likely to have co-occurring conditions such as anxiety disorders or problems with substance abuse. There is a shorter life expectancy for individuals with this illness due to a decrease in health promoting behavior and a higher rate of suicide. Social problems associated with this disease include long-term unemployment, poverty, and homelessness. Last year, I surrendered my last benchmark of sanity, otherwise known as a my full-time, cushy IT job. Having a job, among psychiatric researchers, is considered a major characteristic of being a high-functioning person. I am currently in graduate school so I am still defying the odds.

Stereotypes make schizophrenics seem like some of the most dysfunctional and dangerous members of society. We are homeless, we are inscrutable, we are murders. We are mass shooters like James Holmes, Jared Loughner, Jiverly Wong, and Maj. Nidal Hasan. But these are just unfortunate stereotypes. To be schizophrenic does not mean that someone is homicidal. A schizophrenic is more than a person yelling out expletives on a crowded bus. It is possible to be psychotic and still functioning. Less headline-grabbing are the exceptional stories of people like Elyn Saks who is a law professor at the University of Southern California, a recipient of the esteemed MacArther Foundation “genius” grant, and the author of a critically acclaimed memoir about her life with schizophrenia. In a 2013 article, Saks recalls a study she conducted on twenty research subjects with high-functioning schizophrenia. She writes, “They suffered from symptoms like mild delusions or hallucinatory behavior. Their average age was 40. Half were male, half were female, and more than half were minorities. All had high school diplomas, and a majority either had or were working toward college or graduate degrees. They were graduate students, managers, technicians, professionals, including a doctor, lawyer, psychologist, and chief executive of a nonprofit group.” It is a common misconception that people with schizophrenia are unable to live high-functioning lives.

As you may imagine, I find it easier to admit to being bipolar than I do schizophrenic. I even do so flippantly at times. This is because there is often a more positive reception to bipolar disorder. The disease is often associated with intelligent creatives and has traits that many see as advantageous and covetous.[ref]Jamison, Kay Redfield. Touched with Fire: Manic-Depressive Illness and the Artistic Temperament. New York: Free Press Paperbacks, 1994.[/ref] There is something romantic about the disease even as it wrecks havoc in a sufferer’s life. Additionally, it is easier to talk about depression and mania because the chances are overwhelming that during the span of a normal lifetime, we will come face-to-face with some manifestation of mania or depression, either in ourselves or in somebody close to us. It is familiar to us. This is less the case when it comes to hallucinations and delusions. Everyone has an inner voice that they can talk to sometimes in their thoughts. But hearing voices is not like that. Normal people can distinguish between their inner voice that is their own thinking and do not actually hear the voice of someone talking to them. Auditory hallucinations sound like they are coming from outside of your head. The schizophrenic symptoms I experience are bizarre and scary. When I do hear voices, they are always severely critical, telling me that I would be better off dead. They have blamed me for killing thousands of people with my thoughts. In addition to hearing voices, I also experience paranoia. Paranoia is commonly thought to be the delusion that others are plotting against you—others are either following you, watching you, or talking about you. When I was hospitalized last year in a psychiatric facility, I became convinced that the nursing staff was poisoning my food and I refused to eat any of my meals. I also suffer from what are called the negative symptoms of schizophrenia. Schizophrenia symptoms are typically separated into two categories. The first are called positive symptoms and they can be thought of as add-ons to normal behavior such as hallucinations, delusions, confused thinking or speech. Negative symptoms are deemed negative because they describe a lack of something. These include alogia (lack of spontaneous speech), avolition (loss of motivation), and anhedonia (inability to experience pleasure).

It was once hypothesized that people with delusional or psychotic problems had heightened levels of dopamine. The biomedical theory was that schizophrenic and bipolar disorder drugs worked to reduce these hyperactive dopamine levels by blocking dopamine receptors in the brain. The “dopamine hypothesis” has fallen out of vogue as scientists have found that other neurotransmitters such as serotonin, acetylcholine, and glutamate may also contribute to schizophrenia and psychosis. Abnormalities supposedly key to schizophrenia have been reported in the frontal cortex, the prefrontal cortex, the basal ganglia, the hippocampus, the thalamus, the cerebellum—pretty much everywhere in the brain. In addition, genetic factors and a person’s environment are thought to potentially play a significant role in the etiology of the illness. In other words, the cause of schizophrenia is not known. Still, I accept that it is a medical disease and I am currently on a trove of medications which include antidepressants, anti-anxiety meds, and atypical antipsychotics. “Typical” antipsychotics were controversial and widely criticized because they were shown to reduce a person’s overall functions and capabilities. Atypicals are second generation drugs which target more specifically those things that make us ill and they have much less severe side-effects. I am currently on a fairly stable cocktail of four drugs. In the past, I have been on much more medication than I am taking now. I have also been through A LOT of antidepressants and atypical antipsychotics. It is hard finding something that works and once you do, it is hard not to worry about what will happen if/when they stop working.

But schizophrenia and bipolar disorder are not purely biomedical, no mental illness is. Few would contest the fact that mental states are influenced by an individual’s social environment as much as they are by a person’s biology. There is a complex interaction between genes, neurotransmitters, lifestyle, and the environment. There are studies that link social and environmental factors to an increase in mental illness. These factors include childhood poverty; social inequality; early separation from family; childhood sexual, physical, and emotional abuse. Research has shown that people who face childhood adversities have a nearly three-fold increased risk of psychosis. There are far more complicated and interrelated social mechanisms that contribute to mental illness.

In addition to medication, I am in therapy. My therapist and I focus on Dialectical Behavioral Therapy (DBT) which is designed to help people change their harmful patterns of behavior. It was developed by Dr. Marsha Linehan to treat suicidal behaviors and borderline personality disorder, but has since expanded to other severe and complex mental disorders involving serious emotional dysregulation. The theory behind the approach is that some people are prone to react to emotional situations in an intense, out-of-the-ordinary manner. Treatment consists of identifying thoughts, beliefs, and assumptions that make life harder and then changing the way you react to them. One of the core concepts behind all elements of DBT is mindfulness. The concept of mindfulness is derived from traditional Buddhist practice, but within the context of DBT, it is the capacity to pay attention to your surroundings and live in the moment, nonjudgmentally. I like to think of DBT as the blending of the strengths of traditional talk therapy, with its focus on helping patients understand and accept themselves, and cognitive behavioral therapy, which emphasizes changing negative thinking. DBT also teaches skills to help reduce the intensity of emotions or to distract from the urge to engage in self-harmful behaviors.

Shame and stigma are what just about every person with a mental illness has to face at some point in their life. Sufferers feel as though they are marked, have undesirable characteristics, or deserve reproach because of their mental disorder. As a result, it is very important how we talk about mental illness. Get it wrong, and people can end up misled, or worse, hurt. Shame and stigma are responsible for treatment seeking delays and reduce the likelihood that a mentally ill person will receive adequate medical care. But adequate medical care is more than drugs. In the biomedical paradigm of psychiatry, there has been a failure to adequately consider patients’ subjective experience in research, theory, and practice. In writing this, I want to place myself in the narrative of mental illness by embracing and foregrounding my subjectivity rather than attempting to limit it. Schizophrenia and bipolar disorder have become a part of my identity. Unlike having debilitating, enduring disorders such as heart disease or cancer, having schizophrenia may also entail “becoming a schizophrenic.” I have struggled with conflicting thoughts about my diagnosis and what it means for my experience of who I am. I find that the more I accept my disease and my need for medication and therapy, the less I let it define my life. It becomes just a case of bad luck and not my essence. It is also important for me to share my story to let others know (and to remind myself) that we are not alone. Being seriously mentally ill feels like the loneliest thing in the world. Shame and stigma just amplify that. But it is important to know that we are not alone and we are not broken beyond repair.