How Modern Schizophrenia Treatment Steals Our Autonomy
by Sarah Myers
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In the final semester of college, while I was off of my medications, I would introduce myself with a fun fact. “I’ve hallucinated since I was five years old!” I claimed. This was partially true, for I had visual and auditory experiences so intense they gave me nightmares as a child and later transformed into fancy colors and cats. At the age of fifteen, I read books that called these hallucinations. I began speaking in word salads, claiming that I was the Second Coming of Christ to anyone who would listen, and spent hours engorged in books about past lives, prolonging any break I had from reality.
For many people with schizophrenia, drugs are our only line of treatment. It is the first suggestion we are met with upon entrance to the mental health industry. However, side effects, an accessibly-limited healthcare team, and poor attitudes from the psychiatric industry take a toll on the lives of people with schizophrenia, much to the cost of restoring our sense of agency.
During my fourth stay at an inpatient psychiatric hospital, I was newly diagnosed with schizoaffective disorder. People began treating me differently than the past three times when my diagnosis was depression. Nursing staff spoke to me in the third-person. Cameras were always monitoring me, and I was told to stay in front of them. And when I was hospitalized in the emergency room for allergic reactions, a similar story unfolded. The visit started with delighted, easygoing EMTs wheeling me in a gurney from a restaurant to the ambulance, where they loaded me up with saline water. The trip ended with me hallucinating, growing angrier at staff with a loud voice, demanding to know what it is they had just done to incur these hallucinations. “Give me a warm blanket!” I would demand. “Why don’t you people fucking know how to calm people down!”
Who was to blame? Are hospital staff prepared for psychotic symptoms upon the insertion of their needles and quick demands? The nurse threatened to admit me into the psychiatric unit if I could not calm down and explain myself.
By the time we meet a medical professional, we may have progressed so deep into the illness that hope may be almost lost and the attempt to correct assumptions is futile. Treatment plans are created to manage exacerbated symptoms. The ER staff viewed me as an incapable psychotic, and it wasn’t until five hours later that my father finally got me discharged. During a psychiatric inpatient stay, I would ask for hobby items to pass the time, like access to philosophy articles or books to read. Each time I was met with screening and hesitation. And my emergency medicine physician cousin has told me plenty of stories about how people in the throes of psychosis would violently be strapped down in hospital beds while raging and screaming.
While physical restraint may be typical for people with schizophrenia, living to write and reflect about it is not. The illness sometimes limits patients to making ends meet rather than trying to thrive. The erosion of the self continues the further one falls into the medical world for treatment.
For the large number of afflicted individuals with a psychotic disorder, one can count the number of writings reflecting on living with it on one hand. Developments for schizophrenia therapies through psychotherapeutic or biological merits that restore the schizophrenic’s autonomy and reflective insight have been few. As of now, there exists more than 20 different antipsychotics on the market that essentially fulfill only one purpose: to sedate psychotic symptoms at the hands of gatekeeping authority. All of them include these severe, life-threatening, and even socially detrimental side effects. And when we’re inpatient, all staff can do for a psychotic is sedate us with medications until we calm down for observation.
But, I’ve wondered, why is there a stagnation for treatment of schizophrenia? Why must I be treated so dimly, as if my individuality behind my illness does not exist? Although I am not taught how to manage my symptoms aside from medications, I am so aware of my disorder that I can employ cognitive behavioral therapy, skepticism, and logical deduction to back myself out of a delusional thought.
There is a culture in the medical field that besieges doctors and patients alike which assumes people with schizophrenia are incapable of gaining insight into their disorder. This is referred to as anosognosia, which does plague much of the population afflicted with schizophrenia. Anosognosia is seen as a fixed trait. It is not seen as a trait that can disappear or get better with gradual conversation. When I first entered psychiatric treatment, physicians would dance around the topic of my condition so much that I was unaware that I was experiencing psychosis. As a result, I was put on an antipsychotic without being told why. In the process of attaching anosognosia to patients, opportunities to grow awareness in a person are missed completely given the prospective case of hopelessness that is attached to those of us with the diagnosis.
One of the key moments in my recovery was having a direct conversation with one of my psychiatrists about how exactly psychosis was affecting me–and the fact that I was indeed psychotic. While some cases are more abysmal than others, other cases disregard the simple possibility that self-aware people with schizoaffective disorder or schizophrenia exist. Those of us privy to self-awareness have a perspective that is unique to voice-hearers alike. We can speak to our experiences and serve as a bridge to neurotypical professionals and afflicted people that would otherwise be lost without proper cultivation as a trade off between pure drug treatments and cognitive behavioral methods. Individuals with schizophrenia need structural care in the form of housing, financial support, regular meetings with physicians, nurses, case workers, and counselors, and more.
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I have brought my issues with my medications up with my psychiatrist, fully-lucid and aware. I was on a full second-to-highest dose of the drug, when upon hearing of my side effects, he told me to cut out almost half of my dosage “cold turkey” and start a new regimen. This psychiatrist, while hard of hearing, hard of understanding, and hard of retention of my monthly answers to his repetitive questions, was also impossible to reach. I was unable to contact my psychiatrist directly. Instead I had to wait for ten to 30 minutes while I went through the menu key pad, minutes of being on hold, before I could even speak to a receptionist. These barriers do not promote a culture of confidence or independence in mentally-ill patients.
What helped me gain independence was a hybrid model of intensive and outpatient care, which was the assertive community treatment (ACT) plan. I was equipped with a mental healthcare staff of six people that I saw weekly which included: a psychiatrist, a counselor, a social worker, a nurse, a case manager, and a vocational specialist. The staff was enthusiastic and by working together they were able to accommodate the intense needs of each individual patient. And ultimately, a psychiatrist who told me head on that I was acting psychotic proved to be the breakthrough that I needed to take ownership of my recovery so that I could rehabilitate to a more functioning person.
After a tic I developed from my antipsychotic, I considered another medication change. But this time, I wanted day-to-day monitoring. My only option was to admit myself in a psychiatric hospital, and for me that is a dismal option. I’ve been told that the criteria for admittance to psych hospitals is the presence of suicidal or homicidal desires. Considering my caliber of functioning, I met this option with snooty distaste. I am currently in a graduate program. While others may need restrictions in their environment due to the suicidal tendencies that occur with self-harm, the typical psychiatric unit is somewhat of an insult to those of us who are hospitalized and not immediately suicidal. Intensive psychiatric care needs to cater to a middle ground of people needing intensive psychotherapeutic care, without knobless sinks and doorless bathrooms, smocks as my uniform, and coloring books as my entertainment.
However, I have difficulty with this concept of schizophrenia “hierarchy.” The medical intervention of “babying” schizophrenics is a controversy that begs exploring—how much help is truly needed for each case? And is it fair to say that some of us require different needs than others? If patients were treated with more autonomy and respect, maybe it could help even the hierarchy, since many people with schizophrenia believe they have remarkably low self-esteem and do not think they’re deserving of this autonomy. While some may need close monitoring, some others may need it without overbearing control. It hurts both the people who do not need close monitoring as well as those who do by creating a type of monitoring that speaks about control rather than cooperation with patients.
Instead of allowing for the patient to gain a sense of agency that works with one’s disorder, the responsibility is thrust onto the physician to simply make the symptoms go away. In this process, we risk traumatizing patients and reducing their connection to their sense of individual self and autonomy by treating them as a standard threat, by strapping them down violently, sedating them, creating side effects that are sometimes incurable, and ridding of the remaining bit of innocence that our insanity has spared. As a result, there exists exactly one graduate school textbook on cognitive behavioral therapy for psychosis versus the 20 to 30 different drugs and antipsychotics that medical staff thrust upon patients.
The spectrum is wide, but is similar to existing disorders for which we have less stigma. Some children with autism may need physical limitations so that they do not smear feces on the wall, while some can successfully get by with As in school simply with the inability to make eye contact with their friends. But the approach to subtracting a person’s agency is unproductive at best.
While I once was far gone in one of my more debilitating cases, complete with monologues about communicating with aliens and CIA torture “memories”, starving myself out of the fear of food, and being unable to distinguish fact from fiction, my request for close-monitoring came at the result of my own developed meditative deduction and logic.
Unfortunately, the past ten years have left me with the impression that the mental health industry doesn’t believe people like me exist—people who, aside from a medication they take, can pass off in the public as a completely neurotypical individual once confronted with the realities of their illness through the use of self-regulated “coping skills” (a term common in the treatment of most mental illnesses except schizophrenia). Some people have some element of moderation of their psychotic symptoms in the way anxiety can be moderated by self-talk. We have a sense of agency over the symptoms through our own self-talk and regulation strategies, which ultimately earns us the title as high-functioning mentally-ill people. While the distinction of this “class” of disordered patients is somewhat met with criticism, the distinction is still important to make, and similarly to anosognosia, high-functioning should not be seen as a fixed trait.
The truth is that you can have psychosis, and not be “crazy.” The truth is you can still experience hallucinations and still be able to hold a logical conversation. The truth is, that there is a very insurmountable industry gap which refuses to address high-functioning schizophrenics by developing alternative psychotherapeutic treatments. Both awareness and levels of functioning are fluid, and change over time, but hopefully grow with commitment to their nurturing. At least, that is my hope, and what the experimentation of my own life has to offer.