Patient Blogs | Schizophrenia
My Glimpse into Others’ Experiences with Schizophrenia
photo of holding hands in support group

I only knew one perspective in the first 8 years of living with schizophrenia, and that was my own. I met others dealing with various mental conditions when I was hospitalized, having lived in an in-patient locked unit for 2 weeks and attended outpatient care 2 weeks after. Later on, because of sharing my experience, people contacted me with their own situations and struggles. This is what I learned:

I’m not alone. Among my friends and their friends, one by one, people opened up about their experiences with schizophrenia. Everyone knew somebody who knew someone. Heartbreaking stories with tears. Triumphant and successful recoveries.

My girlfriend’s sister was having trouble and had been isolating herself even though she lived with her parents. She stopped working. She was potentially hearing voices. My writer buddy’s brother-in-law had been battling his condition for years. In a book club, three people had family members with schizophrenia. Mental conditions don’t discriminate. Schizophrenia affects people of all ages and demographics.

In the hospital, a young man fresh out of college read his poem aloud to everyone in the cafeteria. Another young man lent me his MP3 player and a few quarters to buy a drink from the vending machine. A teenage boy mimicked me jogging on a treadmill even though he had an injured foot. A grandmother needed help dialing the phone to get in touch with her son and didn’t believe the phone number was no longer in service.

A young woman in college checked herself in after going to the school library. A middle-aged woman used to be a real estate agent, knew all the neighborhood history, and became my roommate. From the people who reached out to me virtually, mostly were parents wanting to know how to help their children. A mother discovered her middle-school boy having trouble and searched for any book that might give her more knowledge and hope.

Lived experience is unique and personal to each person. Patients I met in the hospital looked like anyone else on a busy street in a metropolitan city. But one never knows what’s underneath one’s appearance. A father worried about his son’s behavior and wanted to know what he could do, only to find out that his son had died by suicide the next night. His son must have been under extreme stress, anxiety, and turmoil, which he may have struggled to communicate. 

Treating mental health is not a simple, straight line. Schizophrenia is a condition of the brain and mind. For me, I only personally received an official diagnosis 6 years after living with it and was confused and struggled with it. Even though I was taking medication most of that time, I didn’t make the connection that my broken brain was the cause of my unusual experience. I had to work on myself and with doctors to finally make progress. Hearing from others, each story showed a different path toward understanding, healing, and recovery. For some, it might be a quicker journey. For others, they might never get there.

The more we understand and speak about schizophrenia, the better we can help our loved ones fight, manage, and live with it.



Photo Credit: AJ_Watt/ E+ 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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