The What, Why and So What of Psychosis

BY PETER VARNUM

An abundance of stories about mental health these days seem to be rejecting traditional theories of mental ill-health in favor of more common place explanations for distress. Rejecting the inaccurate chemical imbalance theory, advocates instead write and speak about trauma in early life that can lead to symptoms similar to those of depression or anxiety. Research backs this up.

The mental health field is also beginning to recognize how people’s life situations impact health. People will feel more anxious, and even more depressed, if they are buried under financial burdens or worse. If you do not know how your next paycheck will cover the rent, of course you will feel stressed. Research backs this up too.

Often, people will caveat their insights. “Excluding more severe conditions like schizophrenia or psychosis,” they will begin, before hammering home the point that social determinants of mental health have an outsized effect on mental health outcomes.

This got me thinking: Is it true that you need to exclude more severe conditions? What constitutes “severity,” anyway? More personally, what is the thing that I have experienced, which doctors have variously called psychosis and bipolar disorder? What is an “episode?” Perhaps most interestingly, why does whatever it is that happens to me… happen to me?

What is psychosis or “altered perception syndrome?”

The organization I work for, Orygen, specializes in youth mental health and has put out several fact sheets about that topic. I like their definition of psychosis: “a term for a range of symptoms where a person’s beliefs, thoughts, feelings, senses and behaviors are altered.” Further, Orygen defines an “episode” as “a period where someone has more intense or severe symptoms of psychosis that last for more than a week and that interfere with their day-to-day life.” Both definitions fit my experience.

I recently met a group of people with lived experience of “psychotic disorders” and academics who make up the Massachusetts Consumer Advisory Board for Mental Health. Among them is Linda Larson, a 74-year-old woman who has a diagnosis of schizophrenia and has worked systematically to change the highly stigmatized name of this condition. In a survey of 1,200 people, Larson proposed the most popular solution: “altered perception disorder.” This solution seems strikingly close to Orygen’s definition of psychosis – and doesn’t carry decades of stigma. Larson and her group remain on the mission to change nomenclature, countering both societal and self-stigma. Count me among their supporters.

Whatever you call it, my experience of separating from my normal reality was at once terrifying and transcendent. I’ve never felt more connected to the world, the universe, God, or nature, than in a state of psychosis. I suspect this is about a subsiding of my ego. One mentor once remarked to me that people seek out this ego-less state through meditation, or mind-altering drugs such as psilocybin. Though I have never actively tried to induce an altered state by one of these methods, I have learned to deeply appreciate the spiritual elements of my experiences.

It has been tempting to put the experiences in a box, label them “undesirable” or just “bad,” and try to keep them at bay. Episodes of psychosis have interrupted my life, caused loved ones to worry, and cost time and effort and sometimes public embarrassment. And also, there were extended moments during my episodes when I had never been surer that the universe is in some sort of cosmic balance and I am just a pawn in this system. Despite how that may sound, this reality was extraordinarily comforting and unlike anything I’d experienced before or since. I have learned to cherish that experience, while understanding that I cannot live in that state on a consistent basis.

While profound, that part of my experience of “altered perception” is also the most fleeting. It does not encapsulate the real-world consequences of an episode, which for me have included run-ins with police and time in holding cells, ambulance rides to hospitals, battles with insurance companies who would not cover anything related to mental health given my history, sensitive conversations with employers, explanations to romantic partners, spats with my family, inexplicable credit card purchases, etc. The list is long.

There is also the state I enter in the lead-up to an episode, perhaps the most important thing for me to recognize and address. This is about the daily stresses in my life, how much is on my plate, and what I’m doing or not doing to look after myself. More on the “why” of all this below, but the characterization of this pre-episodic period includes, for me, feelings of constant stress and anxiety, difficulty sleeping because my mind doesn’t shut off, and then, subtly, a sense that I can handle all of it because I am somehow more capable than others. Or even than I was a few months prior. That misplaced confidence can imperceptibly turn into paranoia – seeing connections between things that don’t exist, or having a sense that I’m being tracked, for example. Once, I thought I was being recruited to the CIA through an elaborate series of covert signals and instructions, which I began following. They led me to miss a plane, rent a car, shoplift a phone charger, and then check in to a luxury hotel. I wound up in a hospital shortly after.

Following the episode, there’s the recovery period, in the hospital and after. The time in the hospital when I am stabilized, sedated, or tranquilized, through both regular routine and diet and strong medications. The process of convincing myself, and the treatment team, that I am capable of leaving and returning to the world – not fully out of the state of paranoia; that feeling is strongly ingrained and takes time to come out of – but knowing that the care in the hospital isn’t right or desired. And then actually reintegrating into my life: returning to work, facing my relationships, making sense of the whole experience to myself, figuring out how to communicate it to whom.

It’s a journey, and it’s a lot of work. But occasionally I ask myself if I could wave a magic wand and “not have a history of psychosis,” would I do it? And the answer is, resoundingly, no.

Why have I experienced psychosis or altered perception syndrome?

I have been on a diagnostic, medication-filled, and reflective journey about my mental health since age 17, when I was hospitalized after an “episode of brief, reactive psychosis.” I’ve had three hospital visits since, all after a severe experience of altered perception, and some psychiatrists have given me a diagnosis of bipolar disorder. Another opined that my “history” sounds more like “stress-induced psychosis” than bipolar. I’ve written before about how labels are generally unhelpful to me – and how this is a privileged position to take given that I can afford my own therapeutic regimen out-of-pocket.

In any case, the biggest question of all still nags at me: why has this happened to me? It is convenient but inaccurate to explain it away as the bad luck of genetics, because we know that genes are exposed to a given environment, not just a vacuum. It is not the case that I was abused, neglected, wanted for material needs, or saw violence when I was growing up – in this sense, I was not “big-T” Traumatized. So why the hell does this happen to me?

I believe my experiences are my body’s way of telling me that I simply cannot carry on how I have been carrying on any longer. I have pent up so much anger, or grief, or something I cannot explain, that I simply explode. Perhaps the biggest culprit for my psychosis has been too much “empretzlement” – the mental gymnastics where you tell yourself what you’re doing or saying is aligned with your values, not hypocritical, and true to who you are – when you know deep down this is not the case. For whatever reason, my body simply does not tolerate me lying to myself. It has told me this when there is too much on my plate, I am following somebody else’s definition of success, and I am not giving myself the attention and ability to be heard that I deserve. For some, such symptoms may lead to a cold, or even a panic attack. For me, it’s been psychosis.

It is as though my body ensures that my plate becomes lighter, I live as I am and not as I am expected to be, and I give myself the attention and care I need and deserve. My psychosis feels like a natural reaction to the misalignment of my life. It may be severe, but perhaps that severity mimics the severity of my empretzlement.

Critically, when my therapist and I got to the place of recognizing that some part of me – “my body,” I’ve called it in this essay – reacts to my own behavior and life circumstances, the question of whether “I have a mental illness” doesn’t help me. What does help are the lessons I’ve learned along the way: I must know myself and my limits, and I must listen to my body when it tells me something is amiss. If I don’t heed these lessons, some part of me simply cannot abide. If experience is making the same mistakes over and over again, wisdom is gaining insight from mistakes. My psychosis has undoubtedly made me wiser. This is perhaps the biggest reason I wouldn’t change my history if I could.

There are other theories that do their best to provide some explanation; I’ve explored some of them with my therapist. Intergenerational trauma may be passed down and latch on to children unbeknownst to them. This could make sense, given my grandmother’s emigration from Lithuania during World War II, her partner abandoning her and their family shortly after arriving in the US, and a history of alcoholism on both sides of my family. “Little-T” trauma, which isn’t about violence or sexual predation but rather a sense of helplessness from an insignificant childhood event or ongoing dynamic, could play a part; maybe there’s some truth here, too.

What matters most is the story I believe. The reason that matters is that, ultimately, I am in charge of managing my life, including my mental health. I no longer need a doctor, or a family member, or even my partner, to give me their opinion on why I have gone through these experiences – though those opinions are often interesting, can lead to some wonderful conversations, and are important to navigate relationships and society. But at the end of the day, my understanding of myself matters most.

So what?

I learned in graduate school that the simple question “So what?” is perhaps the most powerful question you can ask when solving a problem. Indeed, I’ve asked it countless times to myself and colleagues throughout my professional career. The same applies to my personal life. In the case of my experiences with altered perception, the question lingers. I’ve had all this insight about what psychosis is and why it may happen to me. So what?

Mental health professionals often talk about “managing your condition” or your life. I would argue that everyone needs a good deal of self-management to make it through life, and that those of us who have experienced severe mental ill-health have experience building up skills that would benefit everyone. Call this “coping,” or “resilience,” if you wish. For those who seem mentally well, we call it “having your life together.” The point is the same: you understand how to comport yourself in our world.

I have also learned that despite risks, mental wellness, for me, means living the life I want to live. When I wanted to go to Kenya at age 24 and saw a psychiatrist prior to the trip, she looked at me and said, “Why can’t you just go someplace easier, like Belgium?” The xenophobia aside, this comment embodied what many people, including friends and family, thought I should do with my life: Don’t do things out of your comfort zone. Take a safe route. Set conservative limits.

Instinctively I knew I would not be satisfied living my life that way. I do many things that doctors have advised against: I travel around the world to new and unfamiliar places in different time zones. I drink alcohol, though not to excess. I do things spontaneously and stray from routine from time to time. I view medications as one component of a regimen, and not a “must-have” for me.

I also take good care of myself: I speak with my therapist weekly, addressing both day-to-day concerns and deep-seated issues (like little-T trauma). I eat well, most of the time, and I exercise regularly. I communicate openly with my partner, and I listen to her when she observes things about me that I may miss. I spend time on close relationships that I care about. Perhaps most importantly, I behave in accordance with who I truly am – this shows up in big decisions like which jobs to pursue, and also in small things like how I spend my Saturday night. This week, it was putting my daughter to bed, pouring a glass of wine, and having a cuddle with my wife while falling asleep in front of a shitty TV show.

Often, I wonder about the veracity of my experiences and my reflections on them. And often, I turn to a pillar of wisdom in modern society, Albus Dumbledore. To quote Dumbledore to Harry Potter when Harry asks whether he can trust his experience and conversation with Dumbledore: “Is this real? Or has this been happening inside my head?”: “Of course it is happening inside your head, Harry, but why on earth should that mean it is not real?”

What a validation. He’s right, of course. And it has been essential for me to believe this of my own experiences, and find close ones who support that belief. My experiences have not all been rosy, and they’ve also not all been horrific. But they’ve undoubtedly been real, undoubtedly shaped who I am today.

I have learned not to believe I have “conquered” my psychosis. It could return, and if it does, I will get through it again. But I don’t fear it the same way I once did. And, through all this processing and experience, I believe it has less potential to derail my life in a way that would make it impossible to put back together.

---

Peter Varnum is the Chair of the Board of The Stability Network and Associate Director for Orygen Global, looking after Orygen’s collaboration with the global youth mental health community. Prior to Orygen, he built and led the World Economic Forum’s work on global mental health. He also serves on the Healthy Brains Global Initiative’s Lived Experience Council. He earned a BA in English from Carleton College and an MA in Law and Diplomacy from The Fletcher School at Tufts University and completed the World Economic Forum’s Global Leadership Fellows executive education program.