Living with Schizophrenia, and Thriving: A Conversation with Carlos Larrauri

Living with Schizophrenia, and Thriving: A Conversation with Carlos Larrauri

Carlos Laurri
Dr. Joshua Gordon, Director of NIMH, and Carlos Larrauri

Psychosis and other serious mental illnesses are daunting and carry with them a major stigma. Science is still grappling with how to better understand and treat serious mental illnesses, as are the social circles and communities who support those with mental illnesses.

Carlos Larrauri is striving to overturn this stigma and advance both the science and community support structures around serious mental illnesses. Having been diagnosed with and treated for schizophrenia since college, Carlos has the unique ability to lead with lived experience and help patients, clinicians, and families better understand, treat, and maintain recovery from psychosis and other mental illnesses.

Today, Carlos serves as a co-chair of the  Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ) program, a major public-private partnership between NIH’s National Institute of Mental Health (NIMH) and partner organizations from industry and nonprofit sectors, managed by the FNIH. As a leader in addressing this important unmet neuropsychiatric need, and one offering a unique perspective, Carlos uses patient advocacy and storytelling to raise awareness and propel advancement in this therapeutic area.

Can you share a story that you would tell someone who doesn’t know you, one that would illustrate your lived experience and drive home who you are and what your life is about?

I often share that I wrote my first scientific paper on schizophrenia in seventh grade. I chose schizophrenia because I had read A Beautiful Mind, had seen the movie, and was so moved by it. After writing the paper, I sent it to a family friend, who is a Harvard psychiatrist, Joseph Gonzalez-Heydrich, and he said, “Carlos, this is an A+ paper!”

Years later, when my mom is seeking help for me, she goes to Dr. Gonzalez-Heydrich — who we sometimes call Saint Joe because we always turn to him when there’s a medical crisis — and he helps diagnose me and is instrumental in getting me the care I needed.

And now, fast forward another few years, and we work together on the Schizophrenia Spectrum Biomarkers Consortium (SSBC) (a similar effort to advance treatment for schizophrenia) and lead the frontier of clinical development. It makes you think, “what are the odds?” I’m not superstitious; I don’t believe in serendipity or fate, but I believe incredible things can happen. Working on research projects like AMP® Schizophrenia and SSBC with people that were once mentors, but are now colleagues, provides a deep sense of meaning and optimism for my work. 

Many of your publications focus on your lived experience with schizophrenia and how that informs your advocacy and patient engagement with programs such as AMP SCZ. How crucial is to for you to be able to share your experience within these publications and with the community at large?

It’s incredibly crucial for me. I’m at the Harvard Kennedy School studying policy, and we talk about two types of leadership — technical and adaptive leadership. There are many technical leaders in this space, with PhDs and post-docs, and they know the ins and outs of the field. But adaptive leadership is where it’s at, and in my work as a mental health advocate, that’s so much of what I do. At the end of the day, it’s storytelling to change people’s hearts and minds so that they can value and respect the lives of people with serious mental illnesses and make it a policy priority for clinical development and government investment.

Even if I identify as a clinician and continue to develop my technical skills in law and health policy, storytelling and advocacy will always be at the heart of what I do.

You’ve mentioned that you credit early intervention and diagnosis, as well as a robust support system and community around you, for helping you manage your symptoms and recovery. But you’ve also mentioned that this is unfortunately not the case for many others experiencing psychosis. What programs, institutions, and support systems do you recommend to help others manage and maintain their recovery?

When you’re at your most vulnerable with psychosis, you often need others to step in and advocate for you to get the care and services you need. My experience made me acutely aware of how vital community supports are to recovery from serious mental illnesses and that it’s not just a matter of character or individual willpower. Just like it takes a village to raise a child, that same village is necessary to heal the child’s mind.

I think what people, especially young people, can do is find communities where it is discussed, and they can find peers and role models to help normalize the experience. That can be through NAMI, Strong 365, and Students with Psychosis. These communities value and dignify the voices of people with psychosis and those at risk.

What do you believe can be done to improve earlier intervention, patient engagement, and treatment moving forward for those in similar situations to yours?

When someone has their first psychotic episode, it’s already too late, like someone having their first heart attack. There’s evidence that sometimes a decade or more before the first episode, there are cognitive changes and other signals that can be used to potentially detect and intervene earlier.

Until we have the science catch up to where it needs to be to intervene before the first episode or while someone is in a high-risk state, we must focus on shoring up social supports. We often focus on biomedical treatments – necessary interventions, of course – but I think they are often insufficient, and genuine holistic recovery requires more than just medicines. Developing a serious mental illness is often a profound trauma to your psyche. You usually also need therapy, peer support, community integration, and academic and job support to recover and achieve the developmental and functional goals you want.

How did you first get involved with AMP SCZ, and how important is that program in bringing greater attention, progress, and innovation to those with psychosis or at risk of developing it?

Carl Sagan has a book called, “The Demon-Haunted World: Science as a Candle in the Dark.” For me, these scientific efforts are the light source in what can be a dark and harrowing experience.  As someone living with schizophrenia and as part of my advocacy work, it’s critical to find and cultivate a source of hope.

With schizophrenia, approximately 50% of people will try to end their life, and around 5-10% will succeed. The highest risk is usually after the first episode. It’s such a daunting prospect, such a difficult diagnosis to receive, that many feel like all hope is lost. However, I think the reality and evidence support that most people —two-thirds with the proper care, intervention, and treatments — will recover to some degree. For most people, it does get better. So, it’s important to instill hope, especially at the beginning, understanding that it’s not going to be an easy journey, but you’ll get better at handling it.

The idea that better treatments could be on the horizon keeps me inspired and moving forward. AMP Schizophrenia is an enormous part of that effort. A public-private partnership of this scale can hopefully catalyze industry investment and commercialization of innovative medications, leading to better trajectories for this population.

How do you see the mental health community and support structure evolving over the next 5, 10, 20 years?

On the one hand, this is the first time we’ve had a generation of youth discussing mental health openly and publicly in ways they never were before. This gives me optimism that cultural attitudes will continue to shift and that mental health will be prioritized. On the other hand, we’re still not adequately addressing the mental health crisis, especially for our youth.

As a broader trend, the medical establishment must recognize that these conditions are also psychosocial illnesses, interacting with a social environment that presents barriers to people’s full equality with others. We must integrate biomedical treatments with community and social support. Further, I believe framing these illnesses as a matter of human or civil rights is imperative to advance the social policies that support people’s recovery and thriving.

Since your diagnosis, you’ve gone back to school, received your MS in nursing, are currently pursuing your master’s degree in public administration at the Harvard Kennedy School and a JD at the University of Michigan, and also serve on the Board of Directors at NAMI. You’ve been able to manage your own symptoms and recovery, and you’ve become a strong advocate and voice within the mental health community. What are your future goals – both personally and professionally – as they relate to advocacy and patient engagement within the mental health community?

I like to tell people, “I didn’t choose mental health; mental health chose me. So, I’m just playing the hand I was dealt.” Nevertheless, I hope to stay true to my mission of serving this population.

Ideally, I’d like to engage more deeply in research on lived experience or serve the public in either elected or appointed office. I hope to see a world where people, even with serious mental illnesses, are represented in the highest echelons of policy, power, and politics in the United States. It’s 2022, and we still don’t see neuropsychiatric disability in the public arena prominently, certainly not in politics or even science to some degree.

Ultimately, we need more representation of people with lived experiences of serious mental illness, and more broadly, other disabilities, in science, research and policy.

To learn more about Carlos Larrauri, his work, and his mental health advocacy, visit his website: https://www.carloslarrauri.com/home

Read Leading Science With Lived Experience, an article co-written by Carlos and Brandon Staglin.