Patient Blogs | Schizophrenia
How I Started Talking About Schizophrenia
photo of friends talking on couch

Schizophrenia is a personal, sensitive, and serious topic. As an introvert, I don’t think out loud when something is puzzling or troubling me, so it was natural for me to deal with my experience with schizophrenia by reliving events in my mind and mumbling words I said or should’ve said better repeatedly in private. 

My friends understood I had a brain disease long before I could accept it. Before I understood and could talk about schizophrenia, my friends expected my privacy. A close friend told me years later that without my explicit permission, she felt that it was not her place to bring it up with me directly. Perhaps that respect for privacy was shared by many. Instead, my friends asked me if I needed dinner, to take a walk, to have a sleepover, to see a doctor, or talk to a therapist. 

It took me years of processing my experience before I could talk about it with friends. To me, there were two different kinds of conversations I could have about schizophrenia. One was rooted in reality and focused on the treatment of my brain disease; the other was about my thoughts, which included my imagination, hallucination, and intuition. 

Most of my friends wanted to talk about the first kind. How was I going to get well? What help did I need? Did I stop taking medications? Eventually, I could consider my health care and be on top of my doctor’s appointments and medications. Once I gained awareness of my condition, this was straightforward.

But before I could do that, all I thought about was everything but health care. 

During the peak of my symptoms, I was occupied by my thoughts that felt magical and secretive. I wished I could’ve talked to someone about what was happening to me, what I was thinking. This required someone who wouldn’t judge me and wasn’t trying to solve my problems. As a person who experienced schizophrenia, I found it hard to describe my thoughts and feelings honestly, accurately, and with relatability. Hearing them, I would expect reactions of shock, disbelief, and alarm. 

With friends and loved ones of someone going through schizophrenia, open-mindedness is paramount. I was lucky that none of my friends pushed me away upon hearing what I was going through as I slowly opened up week after week, then month after month, bit by bit. It was a cycle where I received kindness toward my thoughts and emotions, which allowed me to share more, no matter how atypical they might be. For those who listened to me, I never felt my friends were at odds with me when I spoke. 

Opening up about schizophrenia is tough for both the speaker and the listener. But talking and listening is a good first step in moving forward.




Photo Credit: Tom Werner / DigitalVision via Getty Images

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Mindy Tsai

Mindy Tsai

Diagnosed since 2004

Mindy Tsai’s schizophrenia surfaced at age 30. Symptom-free for 10 years now, she shares her personal and non-clinical perspective on schizophrenia in her book Becoming Whole, A Memoir. She is passionate about patient advocacy and clinical research. Tsai lives in Massachusetts and works at a digital health consultancy. She enjoys food, books, salsa, piano, walking, and hiking. Connect with Tsai at her website or on Twitter.

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