Psychosis is not a disorder in and of itself, but rather a symptom that can arise due to a variety of factors, including genetics, trauma, substance abuse, physical illness or injury, or mental health conditions such as schizophrenia, bipolar disorder, or depression, according to the National Alliance on Mental Illness (NAMI). Approximately 3 percent of people in the U.S. will experience psychosis at some point in life, per the National Institute of Mental Health (NIMH).
Psychosis usually comes on slowly and can cause non-specific changes in a way a person thinks and how they perceive things, NAMI explains. Exactly how psychosis manifests can vary from person to person, but in general, people will often see, hear, or feel things that aren’t there, according to NAMI. And people who have experienced a psychotic episode once are at an increased risk of having it again, so it’s important to seek treatment (often a combination of psychotherapy interventions and medication, per NAMI), quickly and early.
Sometimes seeking treatment for psychosis can be a tricky process. “Despite the relative prevalence of psychotic disorders, many individuals who experience these illnesses struggle to connect with appropriate specialized care,” Aubrey Moe, Ph.D., a psychiatrist at The Ohio State University Wexner Medical Center, tells SELF. “Some people may be misdiagnosed, and others may struggle to find providers comfortable with treating psychosis.”
People can actually go months without getting care for psychosis and the longer it lasts, the more difficult it can be to get symptoms under control, Christian Kohler, M.D., clinical director of the Neuropsychiatry/Schizophrenia Research Center at the University of Pennsylvania, tells SELF, and many do end up in the ER. “For a person by themselves, it’s really difficult to navigate this,” he says.
Stefanie Lyn Kaufman, 23, has experienced several episodes of psychosis and knows firsthand the stigma that comes attached to the term. Here, Kaufman—who is the founder of Project LETS, an organization that strives to provide peer-led communities of support, advocacy, and education for people who have experienced mental illness, trauma, disability, or neurodivergence—recalls the details of some of her psychotic episodes and explains why misusing the term “psychotic” is so problematic.
Remember: Everyone’s experience with psychosis is different. This is one narrative and will not necessarily describe each person's reality of psychosis.
Over the years, I have been diagnosed with a slew of different mental illnesses. Different doctors have had conflicting opinions at various stages of my life. Some have argued over whether I have obsessive-compulsive disorder (OCD), panic disorder, bipolar disorder, borderline personality disorder, and eating disorders. However, after 10 years in the mental health care system, the diagnoses that most accurately describe my lived experiences are autism, ADHD, post-traumatic stress disorder (PTSD), and major depressive disorder, prone to symptoms of hypomania and psychosis.
My first experience with psychosis was during my freshman year of college. But I’ve had four major psychotic episodes in my life, and the most recent one was just a few months ago. The experiences have been slightly different each time, but each one was memorable, to say the least.
My psychotic episodes usually start with mixed moods where I’ll be hypomanic, but also irritable and depressed.
I feel bad energy inside of my head and movement that doesn't cease. I begin to have trouble expressing ideas and communicating about what I want or need. I don't want to or feel like I need to speak to other people. I begin to get jumbled, checked out, spaced out, and I turn inwards. I begin to disregard any attempts to maintain a personal hygiene routine. I believe everyone is making fun of me, talking about me, laughing at me.
Each episode I’ve experienced has been slightly different, though. During my first experience, I forgot about other people. I thought I was figuring out the secrets of the universe. I also thought I was being watched. I was offered a medical leave after my first three weeks of school.
The second episode occured during my junior year, while preparing for finals. Words stopped making sense to me. I couldn't write anything, and I could barely form a regular sentence, let alone an academic one. I stood in front of my mirror for six to eight hours digging a hole into my chin because I thought something was hidden in there. I bled for hours and had to tell people I tripped down the stairs and fell on my face, because my entire chin was a bloody scab for weeks. I still have the scar.
I had a third episode my senior year. I developed severe paranoia in my apartment and, again, thought that I was being watched. I ran through the streets of the town where I lived, crying. Each day that my psychosis went on, I would think that I heard an alarm bell going off repeatedly. At one point, I heard a knock on the door and thought that the police showed up to arrest me for something.
My most recent episode happened after college as I was navigating the end of a relationship. Instead of feeling relief, the major disruption in my life destabilized me. Earlier that summer, I had also watched my abuela die for 13 days in a hospice bed and, for the first time, I visited the grave of my late aunt and was overwhelmed by thoughts about sickness and trauma.
As a result, I became incredibly isolated and barely left my room. I took a pair of scissors and started chopping chunks of my hair off. I stopped eating. I saw dark spots and bugs in places, and I would move around my room trying to kill them—but they didn’t exist. I didn’t want to be in the dark, so I kept a light on every day and night. I felt like my body was being infiltrated with poison and toxic energy.
It’s important for me to note that many of my experiences were rooted in my reality. At my university, I was being watched. As a disabled person who uses mobility devices, people usually do stare. My perceptions of my surroundings may have been off during my psychotic episodes, however, I felt my state of mind was based on very real experiences.
It hasn’t been easy for me to find treatment during these episodes, and my most recent experience looking for care was incredibly bad.
Once I recognized that my symptoms, especially psychotic symptoms, were escalating beyond my control, I called nearly 30 different providers to try and find support. Some did not answer, and some had no availability or were not taking new patients. Most offered that I just go to the emergency room and access care that way. I remember crying on the phone, begging providers. "I'm sorry, there's just nothing I can do," was a phrase I heard.
It took three weeks before I finally got help, when I was willing to pay $ 325 from my savings for a psychiatry appointment in another state. I was given a new prescription but never saw that doctor again. I am still looking for a psychiatrist on my insurance. Unfortunately, my experience isn’t rare.
There are a few important things I want people to better understand about psychosis.
For starters, people with psychotic disorders aren’t inherently violent or irrational, they just experience reality in a different way than others—and it’s often temporary. People with psychosis also don’t have multiple personalities. This is a popular myth glorified in the media and in movies.
Psychosis can often be described in problematic ways. For example, a common definition of psychosis is "believing things that other people don’t." But that is incredibly vague. Who are the “other people?” Who gets to be the baseline of rationality? This draws a hurtful line between people who experience psychosis and neurotypical people, further alienating and stereotyping those dealing with mental health issues. On the other hand, some people actually don't find it appropriate or helpful to think of psychosis as an illness at all. There are also many different cultural and spiritual interpretations of psychotic symptoms.
The word ”psychotic” is not a buzzword to throw around when you want to describe feeling out of control. This is one of my biggest pet peeves ever and needs to end. Typically, when someone says "psychotic" they mean out of control, absurd, ridiculous, or violent. The word “psychotic” should be reserved for people experiencing psychosis—and that's all.
Currently, I am not actively psychotic, or having an episode. And at this point in my life, I feel I know myself better than I ever have, and I am learning how to make this life work for me.
Some days and weeks are good. In March, however, I experienced a traumatic loss, which has been an extreme trigger for my symptoms. I do often have trouble reading other people's intentions and trusting them, and I don’t always trust my own perception of things, so paranoia is often present for me even outside of psychotic episodes.
I know that my diagnoses and symptoms have led to me losing opportunities, relationships, privacy, and the ability to be seen as a full, complex human being at times. But psychosis is not all bad. Some of the most awesome conversations I've had have been with people with psychosis who make up new words and universes, and who connect ideas in incredible ways.
Ultimately, I am just no longer interested in pretending to be neurotypical. Having a genuine relationship with myself and accepting myself for who I am is the most important thing for my healing right now—and I’m learning how to do that more and more every day.