In 2021, the song “We Don’t Talk About Bruno” from the Disney animated film “Encanto” became a breakaway hit as the longest-reigning chart-topper for Disney in Billboard’s history. The song struck a nerve in popular culture because it tapped into a deeply vulnerable truth – we’re craving a conversation about mental illness. This song was really not about just any mental illness but the kind of conditions where people hear voices, see visions, have extreme experiences and often, like Bruno, are hidden away. Unlike depression and anxiety, these illnesses aren’t the struggles we’ve become more accustomed to discussing, but rather, these are psychotic illnesses, including schizophrenia, bipolar 1 and delusional disorders. In my opinion, these conditions are what we struggle with most as a culture to discuss.
Our reluctance to talk about psychosis creates an insidious problem that can contribute to unnecessary suffering for the people and families impacted by these symptoms. Sometimes it is simply impossible to hide psychosis. For example, when someone is visibly psychotic on the street or so severely debilitated, they’re unable to care for themselves or so volatile that they wind up in the hospital to protect them from harming themselves or so tormented that they succumb to a death of despair. These stories become the visible stories of psychosis.
At the same time, recovery from psychotic illness becomes hidden. People living in recovery from mental illness aren’t easy to pick out of the crowd. They’re regular people living their lives. They face a dilemma — why talk about this if you don’t have to? We need to start talking about recovery because, as serious as psychosis can be, recovery is possible and hope is a key ingredient to finding recovery.
In a nutshell, recovery from mental illness is living a meaningful, self-directed life while successfully managing any symptoms of mental illness that may or may not persist. While some people picture recovery as being completely symptom-free or no longer using medication, in fact, recovery from a mental illness doesn’t require an absence of the illness or an absence of treatment. Using treatment services (for example, calling a suicide hotline when having suicidal thoughts) can be an important sign of recovery because it shows an ability to manage symptoms proactively. Many people who hear voices continue to hear them throughout their lives but use a combination of skills, awareness strategies and medications to reduce the negative impacts of these voices. Life still has many ups and downs in recovery. Every human life is a constant work in progress.
My mom experienced a psychotic break when I was about six years old. Over the next eight years, she was diagnosed with bipolar 1 and struggled through episodes that led to treatment, non-treatment and what I call “anti-treatment” (interventions that actively made her more ill) before working with a psychiatrist who had the knowledge and persistence to support her in recovery. Getting a personalized medication regime and support from someone who genuinely believed in her success helped get her back into living her life. She’s now retired and a grandmother, active in her church community after working for 20 years at a school where she was a beloved colleague.
Reconnecting with my childhood experiences when my mom was struggling with psychosis has led me on a path to work on new solutions for families like mine. I’m proud to now work on the pioneering team at Doro Mind, a Brooklyn-based service provider for people and families experiencing serious mental illness. Our North Star is to make recovery the norm for people with serious mental illness. To get started, we begin by starting the conversation.
For twenty-five years, my family didn’t talk about psychosis because my mom was well, and therefore, we didn’t have to. I’ve come to realize it’s important to talk about because others need to know that you can live well with mental illness. I know that if my family struggled to talk about this, many others do as well. I sought out people and families who would speak with me about their experiences and published them in a collection to bring more stories to light.
In my research, I learned that, beyond families like mine, many health professionals (mental health or otherwise) genuinely do not know that recovery is possible for psychosis and for schizophrenia in particular. Rachael Star Withers, host of the Inside Schizophrenia podcast, lives openly with schizophrenia and shared her story of recovery with me in an interview. She said she often meets professionals, even psychiatrists, who (without doing any history or assessments) don’t believe Rachael has schizophrenia simply because she is doing well. She explained:
“One lady was like, ‘You don’t have schizophrenia. I’ve seen those people. They can’t talk.’ I get it. She had probably done an internship in the emergency psych ward. Yeah, and if you’re in an emergency crisis, it’s true, your talking doesn’t make sense.
“But, I’m not in crisis right now. This is just me, I have schizophrenia but I am managed. So few doctors know how to handle the management state. The goal is to get the person there, but then once they’re there, the professionals seem to say, ‘come back when you’re bad again. Roll back around next crisis. Then we got you.’”
The problem with health professionals not knowing about recovery is that it makes it very difficult to deliver the kind of care that can significantly improve the chances of recovery. Indeed, there has been considerable research on effective methods to treat psychotic illnesses. Early intervention is critical, and important evidence-based approaches include team-based approaches with family inclusion in care, removing the harms of THC, cognitive behavioral therapy for psychosis (CBTp) and effective medication monitoring with side effect management. A new film, Into The Light: Meaningful Recovery From Psychosis, shares the stories of people and family members living with schizophrenia and highlights the importance of evidence-based administration of clozapine – a particularly effective yet often ignored and maligned medication for psychosis. This film and others like it highlight the urgent need to close the gulf between what has been proven to work and what is actually happening in medical practice.
Of course, the reality is that not everyone with a mental illness will find their way to recovery. Lives are lost each minute to suicide and schizophrenia has the highest incidence of suicide attempts of any psychiatric condition. These are difficult journeys and that is all the more reason why we must talk about stories of healing. People and families deserve access to hope for recovery and to work with care providers who share their expectations.
