Creating Identity Beyond Neuropsychiatric Brain Disease: The Individual Road to Transformation

Today, more than 1.8% of Americans live with schizophrenia. That number equates to over 3 million adults aged 18 to 65. Of this number, many will struggle because of the current standard of care, commonly described as the “revolving door of treatment”.

Those who are diagnosed often feel a profound sense of isolation and describe their experience as a life sentence: something permanent that will define and limit them. The weight of stigma, shame, and misunderstanding can make it difficult for people to connect with others or to see themselves beyond their illness. With the continued rise of psychosis and mania diagnoses among young adults, this conversation has never been so timely.

In a recent collaborative CE Event between Silver Hill Hospital and The Dorm, Dr. Rocco Marotta, Dr. Lisa Mann, and Dr. Katharine Cutts Dougherty of The Center for the Treatment and Study of Neuropsychiatric Disorders drew from their clinical experiences and their book, “Lives Reimagined: Changing the Course of Psychotic Illness”, to share a different approach to the treatment of persistent psychotic illness. Their presentation drew significant insight from audio interviews with patients whose lives had been positively transformed by their treatment approach.

Below, we recap key insights discussed during the event.

Roughly 1% of our population struggles with serious psychiatric disorders. Within the hospital system, these patients are often quickly and superficially stabilized, with poor continuity of care, leaving many without adequate support. Exhausted families try to pick up the pieces as their loved ones decompensate, leading to repeated hospitalizations.

This has become known as the revolving door of treatment.

Before we begin, it is important to understand the distinct treatment approach developed by Dr. Marotta and The Lodge team at Silver Hill Hospital. Based on thorough and individualized evaluations of potential psychiatric and physical issues, patients are stabilized through a medication regimen. Clinicians establish ongoing relationships with patients and families to build trust throughout treatment, with the goal of helping the patient develop an informed sense of identity that is not defined by their illness.

Through interviews with eight young adults, Dr. Mann and Dr. Dougherty highlighted consistent themes reflecting the young adults’ experiences. They reflected on how the new treatment approach allowed them to move from persistent, fractured psychotic states to lives filled with agency and social connection.

About the interviewee cohort:

• Two women and six men, between the ages of 25 and 35
• High socioeconomic backgrounds
• Not symptom-free (psychiatric symptoms included severe OCD, auditory and visual hallucinations, depression and flat affect, over sexualized behavior, extreme social anxiety)
• Six sober, two drink alcohol socially; five described cannabis and/or LSD as a possible trigger
• All currently taking Clozapine, with most taking additional medications – five also taking Oxytocin
• Seven of them fully acknowledge the illness

While participants consented to being recorded for the purpose of this research, the actual interviews have been redacted in post-presentation media to protect their identities and privacy. However, excerpts from these interviews will be referenced throughout the presentation.

Terminology matters because language carries associations.

When we think of “serious mental illness”, those associations are generally negative – such as stigma, shame, or hopelessness. When we highlight its biological basis, we shift both the conversation and framework through which it is understood. Similar to other chronic medical illnesses, it is important to understand that neuropsychiatric brain disease is not a moral or a family failure.

This is why the use of “Neuropsychiatric Brain Disease” over “Mental Illness” is an important step in reducing stigma and shame.

Before exploring how treatment works, it is worth understanding how psychotic illness disrupts identity formation.

For those experiencing fractured, psychotic states, it becomes difficult to develop a consistent or positive internal narrative. For example, hearing voices may give individuals confusing, critical, or frightening feedback that disrupts one’s experience and sense of self.

Identity is multi-layered. Genetics, temperament, history, and memories form the framework of internalized feedback, alongside the development of aspirations, goals, fears, hopes, and dreams.

Ultimately, transformation looks different for every individual. Resilience is not about forgetting the past, but recognizing one’s power to make different choices in the present and future.

For many patients, the first barrier to transformation is shame.

Shame involves negative self-evaluation, heightened anxiety and inability to act, as well as increased withdrawal, isolation, and loneliness.

One of the critical findings from the interviews was how shame interfered with communication. Several interviewees noted that it took months to years before they could communicate to their doctors what was actually on their mind.

Shame can also bring a sense of feeling unworthy of help, or of being disliked. This, in turn, exacerbates paranoia and withdrawal, adding to the isolation that so many of these patients feel.

Now let’s review the treatment approach that helped these young adults transform their lives. As noted earlier, treatment is not simply about symptom reduction, but about rebuilding a person’s sense of self.

For those who are struggling with persistent psychotic illness, a safe holding environment is the necessary first element. Once established, treatment focuses on three anchors:

• Trust and relationship are the building blocks of this approach.
• Medication, and ideally sobriety, counters brain dysregulation and sustains stability.
• A multifaceted approach to interventions helps people re-engage, learn daily living skills, develop a sense of agency, and eventually build social connections.

Stability must be guarded through continuity of care. Discharge is never the end of treatment. Step-down programs are useful, and the enduring relationship with the core psychiatrist, therapist, and team, along with family, is key. Participating in society, going to school, finding a job, and finding purpose are the visible fruits of that stability.

At the core, it is a relationship and a connection.

What made The Lodge team different?

They were a team of professionals willing to take on cases that others deemed hopeless. Every person who came to the program was treated as a unique puzzle to understand, with diagnostic labels generally left at the door.

Clinicians focused on patients’ symptoms rather than their diagnostic labels, and were willing to take calculated risks. All team members were attentive to details others might have overlooked.

In this context, conducting a full evaluation was critical to identifying underlying medical contributors to psychiatric symptoms.

Working in a team is crucial for this treatment approach – the work is long and difficult, involving ongoing engagement and connection with patients. When a team works collaboratively, this sustained connection can be shared.Supporting team morale is equally critical as the team helps patients and families maintain hope during a long and difficult journey.

The goal of treatment is not only symptom stabilization, but also the development of a sense of agency and social connection. It’s not about gaining points on a rating scale, but about seeing a patient experiencing a happier and more meaningful life.

For patients who have not responded to multiple treatments, clozapine is generally the preferred option, despite being considered a more complex and higher-risk medication.

In Europe it’s a first-line drug, however in the United States, it’s the fourth or fifth. This is something that needs to shift. Clozapine is an effective medication because it decreases suicide rates, impulsiveness, and tends to help patients maintain greater sobriety.

Since this approach focuses on treating symptom clusters rather than diagnostic categories, a patient may be on multiple medications by the end of an individualized evaluation and medication management trial. According to Dr. Marotta, the focus of treatment should be on what works, not on guidelines published in books.

Oxytocin, a neuropeptide hormone associated with bonding and connection, is often added to clozapine by Dr. Marotta and many of his team colleagues. While not all patients perceive the changes that their family notices, some report feeling a profound difference on oxytocin. One patient described oxytocin as calming the physical sensations of severe social anxiety.

Another patient shared, “Things were really different. Instead of sitting at the back of an AA meeting and not speaking, I now sit in the front and I talk… I can look at you and I can look at other people.” This patient eventually returned to finish college, attended graduate school, and now works at a high-level job. Her family describes her as a member of the family in a totally different way, and she’s happy.

Dr. Marotta describes this as the virtuous cycle of change: some change leads to another and eventually a life is transformed.

Oxytocin has very few side effects; empirically, it works or it doesn’t work. People are not always aware of the changes themselves, but it is often observable. There is very little downside to trying it.

Something else critical for clinicians to understand is that many patients with psychotic illnesses are in denial, which is one of the greatest obstacles to treatment. However, it is important to remember that an individual does not have to accept a diagnostic label in order to accept treatment.

Patients do not have to say, ‘I understand that I have schizophrenia’ or ‘I have some kind of an illness.’ If they accept medication for a symptom that affects them, this is the first step toward symptom stabilization, as medication can bring increasing insights into their illness. Addressing each symptom step by step is the path to a more comprehensive treatment regimen.

Above all, developing a trusting relationship with your patients is essential.

This means listening to and respecting their experiences, whether related to their symptoms or the side effects from medications, and helping them feel safe so they can openly communicate what they are feeling and experiencing. Successful transformation is a long, step-by-step process.

The virtuous cycle of recovery reminds us that one small change can have a ripple effect, eventually leading to the ability to move out into the world.

Psychotic illness makes the development of trust and connection more difficult because of a fractured internal experience. Clinicians and teams who know their patients well are holders of historical memory, and are able to remind their patients about past consequences, experiences, and identity beyond illness.

They can also provide a sense of safety and serve as an anchor during periods of disruption. Having a partner by their side counters loneliness, isolation and a sense of being coerced, which is particularly important if somebody is struggling to accept that they are ill at all. Therefore, maintaining a relationship is especially important.

So what does that relationship actually look like in practice? The patients themselves were clear about what made the difference.

In regards to the professionals they worked with, interviewees highlighted key factors that contributed to successful treatment:

• Having access to a responsive therapist
• Feeling that their individual story was important
• Having a therapist who was knowledgeable and resourceful
• Feeling respected

They also valued the less traditional doctor-patient relationship, with one patient describing feeling treated ‘as if he were family’, and appreciated having their providers communicate hope.

These interviewees were incredibly articulate about the perspectives they gained throughout their journey: from persistent illness to transformed lives.

Not all patients can articulate their experiences, so it is particularly helpful for clinicians and family members to hear from individuals who can.

The more we understand some of the internal experiences and challenges of our patients and loved ones, the better we will be able to articulate, explore, and reflect on these ideas and themes in our interactions with those who may not yet have found the words. Here are some of the perspectives shared by the interviewees:

• Just do the next thing.
• Work your brain.
• Learn to develop a good relationship with yourself.
• Realize you are not alone.
• Be open to everything, even the negative.
• Respect life.
• It takes time to get to know yourself and who you are.
• Understand what is important to you: social relationships, family, romance, and professional life.

Challenges for this group included: losing social competence, learning to live with symptoms, thinking all symptoms are in the past, seeing oneself beyond diagnosis, and struggling to maintain hope.

Finding a path forward for the interviewees involved experimenting with different therapeutic tools and modalities, trying different medications (e.g., oxytocin for social anxiety), obtaining accommodations when necessary, finding small groups that feel safe, engaging in AA, peer support groups, small classes, or a clubhouse, and staying connected with the treatment team.

What this collaborative CE event ultimately demonstrated is that psychotic illness does not have to be a life sentence. Recovery requires more than medication management and a symptom reduction checklist. It requires thinking outside the box and a treatment philosophy rooted in relationship and persistence. The patients whose lives were transformed succeeded because clinicians refused to give up on them. For clinicians, families, and the young adults navigating these illnesses, the message is the same: transformation is possible.

We sincerely thank Drs. Marotta, Mann, Dougherty, and Fialk for sharing their experience and insights into the important topic of psychosis and recovery. Visit our YouTube to watch the full presentation.

The Lodge Program at Silver Hill Hospital is one of the few programs in the country welcoming young adults with persistent psychotic illness who haven’t responded to conventional treatment. The Lodge provides extended, relationship-centered care that is foundational to sustained stabilization and the development of an empowered life. Discover more about The Lodge Program here.

At The Dorm, young adults with psychotic disorders are supported through individual therapy, coaching, and dedicated groups that support cognitive rehabilitation, executive function and independent life skills. As a result of care, clients at The Dorm with psychotic disorders consistently report measurable improvements across all symptoms, including 50% reduction in cognitive impairment.