A Lived Experience Perspective in Suicide Prevention Research

I entered the world of suicide prevention research when I was a first-year college student. Early on, I was cautioned by students more senior to me to avoid talking about lived experience. I was told that it would be a “kiss of death” for one’s career to talk about personal reasons for going into the field of suicide research. However, I chose to share my perspective in this Personal Account because I believe that a lived experience perspective is invaluable in the research world.

As an undergraduate college student, I was drawn to public health and psychology. During all 4 years of college, I worked and researched within these fields at the university health services and health promotion office and in a department of clinical psychology research lab that focused on the self-injurious thoughts and behaviors of youths.

By my senior year of college, I thought I was beginning to understand suicide.

After college, I worked full-time as a clinical fellow with incredibly talented clinicians and researchers at one of the best psychiatric hospitals in the country. I provided dialectical behavioral therapy skills coaching to adolescents and conducted research with Harvard Medical School into suicide and emotion dysregulation among youths who were seeking residential treatment.

I thought I was beginning to understand suicide.

In August 2020, the year after I graduated from college, I published a book that I had started writing during my senior year. The book was about mental health and suicide prevention on college campuses written from my perspective as a student. It was the culmination of a year’s hard work, including research, interviews, and personal vulnerability bound tightly between 368 pages. I dedicated an immense amount of time to being thoughtful about how I self-disclosed my lived experiences. I had grown up with obsessive-compulsive disorder, disordered eating, nonsuicidal self-injury, and suicidal ideation—a total of four carefully crafted chapters in my book. At the time, I was unaware that the most intense and hardest chapter of my mental health journey had yet to unfold.

I had thought I was beginning to understand suicide. And then, I experienced my own acute and very public mental health crisis. And I realized that there was so much more to understand about suicide.

My book was published on August 6, 2020. Eighteen days later, I stepped into the emergency room in a state of full-blown mania and psychosis. I was hallucinating (i.e., hearing voices and seeing images), incredibly paranoid, and fully convinced that my delusions were real. The intense paranoia and delusions lasted for weeks and weeks. When my psychosis hit, it completely took over and made me think and act in ways that make my present-day self begin to shake. It was a horrific experience. My world flipped completely upside down, as I turned from a counselor working in a psychiatric hospital to a patient receiving care in a psychiatric hospital.

For months after the episode, I swam in thick puddles of shame and guilt. Living in a state of depression after the hospital, I felt like I had just woken up from a terrifying nightmare. It felt like someone had come up behind me and completely pulled the rug out from underneath my feet. Then, when I turned around to see who had pulled the rug, it was just a different version of me. Mental illness can rob you of yourself.

It took me a long time to realize that having a mental health episode was not my fault. People do not choose to have psychosis. People do not choose to have posttraumatic stress disorder. People do not choose to have bipolar disorder. People do not choose to have a mental health condition. But for a long time, it felt like it was my fault, and I went from the highest high to the lowest low. I did not feel like I fit the checkboxes of what it meant to be a human being, but I fit into many checkboxes in the DSM. My mind was convinced that the world would be better off without me in it, and I fell into a deep hole of depression.

It was during that time that I entered a second inpatient facility. I found a new therapist. I also found a new psychiatrist, who changed and lowered my medication. I started to have more energy. The fog eventually lifted. And I felt like myself again, which is something that I truly will never take for granted again.

I am here because I had access to treatment and because of my support system. Surrounding myself with supportive people has been instrumental in my recovery. I think about the things I would have missed in the past 3 years had I not sought treatment. I graduated with a master’s degree, crossed the finish lines of marathon races, gave speeches at close friends’ weddings, started to take dance and kickboxing classes, and met many new people in Baltimore. I also work on projects in health equity and injury and violence prevention that I am very passionate about. All these experiences have greatly affected my life, and it is a life that I now see as worth living. When I turned 24, I did not think I would still be here to see 25. I am now 27. July 2024 marked 3 years of my health being stable.

Suicide is a leading cause of death in my age group. In the years since I started working in research, I have known people my age who died by suicide, and multiple people close to me have attempted suicide. I have helped people through an acute crisis, and I have had these incredibly intense mental health experiences. It feels as though I have learned a depth to suicide prevention that I never knew I would have when I started in this research field as a college freshman, and there is still so much more to learn.

My perspective is just one perspective of lived experience, and I think it is critical to include a multitude of perspectives of people with suicide-centered lived experiences, not just as participants but as experts in all stages of the research process. Such involvement includes community engagement from conceptualization to implementation to dissemination. Without inclusion of those who are the recipients of psychiatric services, research gaps will inevitably exist. Lived experience, and a multitude of lived experience perspectives, can add depth and insights to research that hopefully will save more lives. The way studies are designed and implemented can be more sensitive to the population being researched, while also maintaining strong research methodologies comprising quantitative and qualitative methods. Lived experiences may offer insights to make research questions more relevant to the population being researched.

The juxtaposition between two of my worlds—my academic world and my recovery world—continuously exists on parallel roads in my mind. It is in meetings or conferences in academia, where people speak about mental health issues as if no one in the room has personal experiences, when I have felt at a crossroads with self-disclosure: Is it safe to share my perspective? Or should I stay quiet and avoid people potentially viewing me differently? Internalized stigma permeates throughout my body. If people around me really knew my story, would they still want to work with me? Would I still be respected?

I am learning that the answer can be yes. I am currently a faculty member at a leading school of public health, and I am also open about living in recovery—I envision a world where both identities can coexist. In April 2024, the national guidance for suicide prevention (1) included a strategy focused on health equity in suicide prevention, with a goal to “implement comprehensive suicide prevention strategies for populations disproportionately affected by suicide, with a focus on historically marginalized communities, persons with suicide-centered lived experience, and youth.” I feel hopeful that lived experience is becoming increasingly more valued in research.

Two things can be true: I can know how to teach coping skills and still experience moments of deep suffering. I can publish a book about suicide prevention and still be vulnerable to experiencing a crisis. I can be a researcher and be living in recovery without it being a kiss of death to my career.

The concept of common humanity (2) has been a healing element in my recovery journey. Common humanity is one of the three principles of self-compassion that touches on the idea that we are all connected and that we all are navigating the challenges of life itself. To me, common humanity in research means listening to and accepting that we are all human, and bringing lived experiences into research, rather than pushing them away, can save lives. Those with lived experiences can shed light onto areas that otherwise would remain unknown and help improve the field of suicide prevention. I truly believe that the best way to create effective systems-level change, as well as to foster hope and healing, is through listening to people and families who use mental health resources, supports, and services.