Unboxing Psychosis: Making Mental Health Mentionable

Unboxing Psychosis: Making Mental Health Mentionable

By Shannon Pagdon

When I began to experience non consensus realities I felt incredibly alone. Though a diagnosis of schizophrenia and post-traumatic stress disorder (PTSD) gave me the sense of an “answer” I still struggled to resonate with either label since my auditory and visual hallucinations felt so vastly different from the checklist of criteria listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM). In trying to describe my experiences using language that resonated, I usually received two responses- a simplified and inaccurate representation of my words, or a dismissal of what I was describing- an aversion to engaging descriptively with my experience. To question the nature of reality is something we all do, such as disorienting moments of thinking you heard your name being called, seeing a shadow out of the corner of your eye, or hearing a frightening bump in the night. Though experiencing psychosis is a more extreme version of this idea, the current narrative of “othering” these experiences forces the average person to see them as atypical.

Puzzled and searching for my own identity as a young person, I felt fragmented by this compartmentalization of my feelings. Naming my experiences to my family and friends furthered my confusion. I wanted them to understand how unique and strange my experiences felt even to me. In my need to share unfiltered observations with my close people, I often encountered concern or dismissiveness that impeded my ability to clearly communicate about how I was doing. Past experience and fear caused concern that my loved ones would reject my experiences, so for a while I largely refrained from self disclosures, afraid to say the unspeakable.

Where I grew up in a small town in a rural area, there were few people with whom I felt I could share my experiences. I had not yet discovered any mental health resources, and I had not yet found any spaces to speak honestly about my experiences and how I perceived them. In googling schizophrenia I struggled to find community, it felt like my experiences were too idiosyncratic to belong under the umbrella of schizophrenia, and I felt further alienated by the negative stereotypes I read about. I felt tarnished by the negative connotations of labels I encountered, formal writing that called people like me “disturbed” or colloquial pejoratives like “schizo.” It was hard to face my hallucinations directly for what they were, to avoid internalizing these derogatory claims that I was flawed and imperfect.

Later, through working as a peer specialist with OnTrackNY and becoming involved in mental health communities, I gained confidence speaking more openly about my experiences. Consequently, it was by mentioning my experiences with visual and felt presences that I was introduced to Dr. Nev Jones in 2017.  I recall hearing about her experience with traditionally discounted aspects of psychosis, and being astounded that she truly understood what I was referring to when I described my felt presences and alterations of space and time. After meeting and discussing the startling lack of recognition these experiences receive, we co-created the Psychosis Outside the Box project in 2018, which collected real first-person narratives of living with psychosis. Upon gathering responses and reading through the accounts from Outside the Box contributors, I found a meaningful process for my own coming to terms with psychosis. Even now, years after the project’s initial conception I enjoy reading new responses and compiling updated versions of the manuscript. The wide variety of experiences further emphasizes to me the importance of the resource, which details first-person impressions of these phenomena across 250 individual personal accounts to date.

Last year, Dr. Nev Jones and I published a column  about this project. Revisiting Outside the Box and gathering the example narratives we ended up including in the column propelled me into thinking more about where this project could go in the future. As I stated before, I am a firm believer that on some level, we have all experienced forms of non-consensus reality. With psychosis, these unexceptional experiences become not just exceptional, but scary for people who do not understand them. Fred Rogers once said, “Anything that’s human is mentionable, and anything that is mentionable can be more manageable.” If we allow fear to isolate these alternative experiences of psychosis, we are not allowing for the “mentioning” to begin. I advocate for a compassionate “opening” of the dialogue around psychosis. As mentioned in the linked column, without resources to know others experience the same thing as you do, one feels isolated and unsure about bringing them up. Because the current DSM diagnostic criteria does not include things like felt presences (feeling there is an entity around you that you cannot see) of alterations of space and time (objects shifting in appearance or feeling), we are not allowing for these experiences to be normalized, even as part of the mad community.

Since COVID-19 hit the world in 2020, I have noticed family members and friends alike speaking to me about depression and anxiety. Outside of my own circle, individuals who have never endorsed the ideas of mental illness have struggled with these experiences, and the world has in turn opened itself to the mentioning of mental health and slowly allowing it to be normalized. This is a beautiful, necessary evolution that highlights exactly what Fred Rogers was getting at- in allowing that space to bring it up, we have been largely destigmatizing depression and anxiety in an incredibly short period of time for social change. Celebrities are coming forward to speak openly about their experiences, even experiences of bipolar are being named. I hope, believe, and hold in my heart that the same can happen to psychosis spectrum experiences, it is time to start opening that door for individuals to be honest, without fear of life destroying repercussions.

I have been overwhelmed by the positive response the Outside the Box project has received since it was created. It remains a trove for first-person, primary source narratives with much needed information. Since accepting my own more alternative experiences, my mind has come to a sort of peace as well. Years ago, I decided to taper down on all of my antipsychotics in order to learn to navigate my own experiences that had never truly been eliminated on medication. Since this transition, and speaking to myself with compassion, the content of my voices and visuals has quite literally changed and become more neutral and positive. I largely credit this project with helping me to understand and move forward with my own recovery and hope it can support others in finding that space and knowing they are not alone, as I myself felt so deeply.

In service in my role as Vice President of Lived Experience at IEPA, I hope to acknowledge others’ experiences that can be difficult to share. The Psychosis Outside the Box project stands as a testament that we should encourage inclusive, descriptive communication around phenomenology. I believe dialogues on human experiences are improved by acknowledging the inherently subjective nature of the mind and the constructed realities we maintain. Tolerance of, and exploration of differences has always been a hallmark of progress and new learning and begets patience and empathy.  As I grow professionally and seek to pay it forward, I want to help the young people of the modern age mature in their self-fulfillment. As new generations build their identities, their social lives siloed by professions, interests, and mediated by virtual reality, I believe it is critical to examine and share our experiences–particularly those to which we fear others cannot relate, for there we will find the new frontier and answers to the questions of what it means to be us.

Let us come together to unbox the complexities of psychosis and celebrate what we make mentionable. I invite you to join in challenging stigma, promoting empathy, and fostering a community where everyone can come as they are to be heard and respected. Your insights and contributions matter; only you can share your story in your own words. Together, we can model tolerance and understanding, build a world that embraces the diversity of cognitive experiences, of sentience. Let us open the door to honest conversations about psychosis and work toward acknowledging inclusive approaches to mental health. Take action with compassion! Psychosis Outside the Box is a freely accessible online resource for any group interested in reading it. We are currently translating our surveys into French and Spanish and encourage all readers to feel free to distribute it in clinics, share with service users, and help support others in feeling that sense of community and understanding with these experiences.

About the Author

Shannon Pagdon (she/they) is a research coordinator. Shannon is a nationally certified peer specialist, and an individual living with psychosis. Shannon has worked as a Research Assistant with the EPINET New York project at the New York State Psychiatric Institute, Stanford University, and the University of Pittsburgh. Shannon is also the primary investigator of a research project highlighting the intersections of trauma and psychosis, the co-creator of the Outside the Box project, and was recently elected as IEPA’s Vice President of Lived Experience Research. Research interests including improving outcomes of psychosis, stigma surrounding psychosis, mental health psycholinguistics, and the expansion of care into underserved areas. Outside of work, Shannon enjoys baking, reading, hiking, playing video games, and spending time with her dog, Scout!

You can follow Shannon on Twitter: @SPagdon

References

Pagdon, S. & Jones, N. (editors). 2020. Psychosis Outside the Box. V. 1. accessible at www.rethinkpsychosis.weebly.com

Pagdon, S., & Jones, N. (2022). Psychosis Outside the Box: A user-led project to amplify the diversity and richness of experiences described as psychosis. Psychiatric Services.

Declaration of Interests

I am the co-creator of the Psychosis Outside the Box project which is the focus of this blog

Acknowledgements
The World Schizophrenia Day 2023 IEPA Project has been sponsored by H. Lundbeck A/S