Have you ever felt that something isn’t right about how our healthcare system identifies and manages our mental health needs? For many therapists and therapy participants alike, there are regular, eerie moments of recognition that our system may not follow the principles it aspires to. This mismatch comes up in many ways, and is why the Recovery Movement is so vital, to push us to hold to our principles. As a psychologist who has worked extensively with people given a psychotic disorder diagnosis, I see this problem routinely when working with these participants.
What does it mean to have a problem?
Where do problems come from? Our diagnostic and billing systems would have it that it’s all on the individual. Mental illness is brain disease, the model goes (see the working model for research from the National Institute of Mental Health). No insurance will reimburse for diagnosing the environmental causes that are crammed into 13 pages at the end of the Diagnostic and Statistical Manual of Mental Disorders (1), psychiatry’s diagnostic manual. Instead, they focus on the purely individual contents of the previous 700-or-so pages. This individualism is the American ethos: I’m in charge of my own life. If something’s not working, it’s on me.
However, ethos might be better called mythos. Here’s a few of the many reasons why this story is science mythology. First and foremost, we are not actually in charge of many of the factors that affect us. The finances we’re born into. Nutrition access. Digital access. Community discrimination. These and many other external factors have been shown to be as influential on psychiatric diagnosis as any psychiatric factor (2). Then there’s the fact that your brain… isn’t just you. We can debate the existence of free will, but for the most part, the actions that we take are learned from other people or past experiences. The people you grew up with, the people you love – and yes, the people you feel negatively about, too – are, quite literally, part of you.
Where is the problem located?
In fact, your brain isn’t you at all. That is, there isn’t a consistent, definable you. Many of your cells change over all the time. Most of the genetic material in your body isn’t even your DNA (such as mitochondria, the gut microbiome, etc.). Your internal experiences are trained into you. Your identity is a constant construction that waves and shifts depending on elements like where you are, who you’re with, and your developmental progress. These are big concepts and harder to demonstrate than an essay like this can handle, but just take a moment to reflect. Notice what you understand about yourself now, and connect with how different that is from past understandings. When you were in a different relationship, or not in a relationship. When you had a different career, a different home, a different circle of friends. When you had a different worldview. These are big changes, but through them we see that how we identify ourselves is created anew every morning when we wake up. The “I” is reborn.
Why stop there? An individual person isn’t necessarily even the right dividing line. Some have argued that the gene is where it’s at. But there are also collective identities. The family unit. What about your neighborhood? Your town? Your country? One or multiple of your cultural groups? Our species? This is not just minor quibbling. Collective action can be a powerful force: for progress, and for destruction. Humans, or at least some groups of them, have for thousands of years considered ourselves as the owners and/or custodians of the world. That view has created quite a dramatic impact. On a smaller scale, if you’ve played a team sport or been to a major music concert, you know this force first hand.
None of this is to say that the individual level is irrelevant. It can be very important. But it is generally just one of a few important factors.
What and Where is the problem in psychosis?
How does this apply to someone who’s experienced psychosis? Well, the fact that they are diagnostically lumped together as a them is already a sign. Remember how many different levels there are to understand something. People who experience psychosis are as diverse in every which way as people who have experienced any other thing. Why make psychosis identifying? This feels backwards to me.
What is important about those experiences? Are people who have them different in some way? Not really. You can train auditory misinterpretations in anyone (3), and these events show a similar structure for people with and without a diagnosis4. And don’t get me started on delusions. I’d be impressed if you can find me someone that doesn’t have a delusion about something (myself included, I’m sure). More importantly, both of these experiences are culturally bound. One group’s hallucination or delusion is another group’s fact. This is appropriate, because our minds don’t ever give us “truths” of what’s happening. They only make approximate models, based on experience. Not all worldviews that come out of this process are equal. But they all hold together with assumptions.
Finally, there is consistent evidence, over decades of research into psychosis, that the psychosis itself – the positive symptoms, i.e. hallucinations, delusions, disorganization – makes a very small contribution to how someone does over time. Instead, negative symptoms – the lack of participation in expected life activities – and cognitive symptoms – difficulties with memory, attention, and planning – are much more influential (see for instance Giordano et al., 2024).
As a behaviorist, all of these mismatches tell me that we don’t have the right model of the system. Counter to the science, we are focusing on the sensationalized aspects, perhaps. On the factors that confirm our assumption that we are in control of ourselves and our lives. And ignoring the more complicated but crucial influence of how we treat each other, our deficient resources, our systemic psychological misinformation about how we work. For those of you who have watched the TV show, The Good Place, our mental health system often acts like one giant Eleanor: The compassion is there, but when things get difficult, we are quick to judge, distance, and deflect responsibility instead of working together.
Incorporating trauma and righting the ship
There is one other factor for psychosis that I’ve only grazed on: trauma. Between early childhood experiences, racism and other cultural factors, and the healthcare system’s individualistic pathologizing responses to psychosis, the vast majority of people who are seen for psychosis have experienced a relevant traumatic event or situation. This is key. When we take someone who’s been hurt, and tell them they got hurt because they are ill, we just compound the harm. See above for why this is also not true.
Instead, we should be focused on building systems of support. Systems with mental health professionals, fine; but these are secondary at best, just means to the more meaningful ends. I mean strengthening family systems. Educational systems. Employment systems. Nutritional systems. Cultural systems. Faith systems. Physical activity systems. Nature systems. And the links between these systems.
Psychosis will cease to exist when we no longer have to fear harm from one another. We can all be a part of working towards that.
About the Author:
Jonathan Reinharth, PhD is a Clinical Psychologist working in the New York City community for more than 15 years. His current focus is on the REACHES initiative, wherein he aims to build educational partnerships to provide empirically-based, multi-professional, recovery-oriented resources that eliminate systemic prejudice and promote community multicultural collaboration. The emphasis is on partnerships with organizations to share information about systemic psychological misinformation. Dr. Reinharth’s education and training led him through Cambridge, MA, all five NYC boroughs and Nassau County, and London, UK. He co-organized and led a multi-professional OnTrackNY team to identify young people experiencing psychosis, prevent disability, and support them and their families to create productive and meaningful lives. He is currently part of a Lifestyle Medicine team at Woodhull Hospital, in Brooklyn, along with the REACHES initiative and private practice.
Citations:
Recovery Movement: https://imhcn.org/bibliography/history-of-mental-health/history-of-recovery-movement/
National Institute of Mental Health: https://www.nimh.nih.gov/research/research-funded-by-nimh/rdoc/about-rdoc
1 American Psychiatric Association (2022). Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. American Psychiatric Association.
2 Santamaria-Garcia, H., Baez, S., Gómez, C., Rodríguez-Villagra, O., Huepe, D., Portela, M., … & Ibanez, A. (2020). The role of social cognition skills and social determinants of health in predicting symptoms of mental illness. Translational Psychiatry, 10:165. https://doi.org/10.1038/s41398-020-0852-4.
3 Kot, T., & Serper, M. (2002). Increased susceptibility to auditory conditioning in hallucinating schizophrenic patients: A preliminary investigation. The Journal of Nervous and Mental Disease, 190(5), 282-8.
4 Serper, M., Dill, C.A., Chang, N., Kot, T., & Elliot, J. (2005). Factorial structure of the hallucinatory experience: Continuity of experience in psychotic and normal individuals. The Journal of Nervous and Mental Disease, 193(4), 265-272.
5 Giordano, G., Pezzella, P., Mucci, A., Austin, S.F., Erfurth, A., Glenthøj, B., … & Sachs, G. (2024). Negative symptoms and social cognition as mediators of the relationship between neurocognition and functional outcome in schizophrenia. Frontiers in Psychiatry, 15:1333711. doi: 10.3389/fpsyt.2024.1333711.