What Life’s Really Like With Schizophrenia: A #NoFilter Memoir
Mindy Tsai thought the voices in her head were friendly, even fun. But when the people around her began to freak out about her mental illness, fear set in.
What happens when you hear a voice speaking to you, then realize the person talking doesn’t exist? In her 2019 memoir Becoming Whole, Mindy Tsai shares this experience and many others as she describes what it’s like to live with schizophrenia.
“I’m a book person, so when I discovered that I had schizophrenia, I began researching books,” she says. “Most of the stories painted a picture of a very sad, horrible, isolated existence. Rather than write about doctors or therapy, I wanted to write about what my life was actually like. I wanted people to be able to say, ‘Okay, if I were in her shoes, what would I do? Would it be easy? Or would it be hard?’”
'My Reaction Was Curiosity'
Twenty-two years ago, around her 30th birthday, Tsai heard a voice in her head?for the first time — a male voice. “My reaction was curiosity,” she says. “If someone were to come up to me and start talking to me, I would be social and friendly, so that was my attitude and mindset: ‘Who is that talking to me?’ Even though I only heard the voice briefly, it carried through the rest of my experience. I would hear voices from friends and family, nice voices. I realize that other people may not be as fortunate when they have schizophrenia; they could hear voices that are violent or mean. I was very lucky that my experience with voices was fairly pleasant and was more like a fun thing at times, but then, I would hesitate and say, ‘Wait! This is unusual.’”
When her schizophrenia symptoms first appeared, Tsai had been experiencing a series of major life changes: She had broken up with a longtime boyfriend, moved to a new neighborhood, and started a new job as a product engineer in a digital health firm in Cambridge, Massachusetts. She believes the stress may have triggered the voices. “In a way, I think my brain was trying to protect me,” she says. “I knew my mother had schizophrenia, but even so, I didn’t think I had it. Even when it was happening, before I was in the hospital, my focus was always on trying to figure out where the voice was coming from. If I was in a room, I would ask myself, ’Is there someone talking upstairs, or in the other room?’ I was as logical as I could get: ‘Maybe the voice is coming from a speaker or some other piece of technology?’”
Tsai began to confide in a few friends that something was amiss. “They were supportive,” she says. “There is a saying, ‘When you have cancer, people bring you cake and when you have a mental illness, people run away.’ But I didn’t experience that at all.”
Still, her friends struggled to figure out how to respond. “One friend asked if we could go to the doctor together,” Tsai says. “That really helped. Having me be part of the solution, asking for my opinion — that went well for me.”
Other friends thought it was their duty to take charge and intervene more forcefully. “One friend would call my doctor, call my parents, call the ER,” Tsai recalls. “There were times when people were knocking on my door — it confused me a lot. I didn’t know what was happening. Imagine if strangers came knocking on your door and you didn’t know why they were there because you didn’t call them.”
'I Felt Like Someone Could Lock Me Up Forever'
Eventually she ended up in the hospital. “A previous boss and his wife who is a therapist were the ones that recommended my friend take me to the ER. They said, ‘She’s hallucinating. If you don’t take her, she might hurt herself.’ So everyone started freaking out. Everyone had the greatest intentions, but nobody knew what to do.”
Tsai wanted to leave the hospital after three days, but her doctor refused to discharge her. “If you want to fight it, you have to get a lawyer and go before a judge,” Tsai says. “When I spoke to a lawyer, he said, ‘Based on what your friends have told me, I don’t think you’ll win.’ So instead of losing the fight and being committed as an ‘involuntary,’ I agreed to stay. But it was scary. I felt like I could lose everything I had, that someone could lock me up forever, and I didn’t have a say. It was me against my doctor, my friends, an institution, everyone. That’s when I decided that maybe I needed to listen.”
When Tsai entered the hospital, she was determined not to take any medication. “I was trying to figure out the voices,” she says. “I felt I was moving along in the process. Medication slowed me down. I could feel it: It dulled my emotions and made me sleepier. I knew that and didn’t want that. When I told the doctor why I didn’t want the medication, he said, ‘Consider the benefit of taking it.’ For some reason, that was the phrase that did it for me. I was like, wait, is this thing able to turn off these voices? I have been trying to turn these voices off logically. But maybe the pill can help.”
Sharing Her Story With the World
Since leaving the hospital, Tsai has become much more self-aware and open to talking about her condition with friends, coworkers, even clients. The toughest part was deciding whether or not to reveal her schizophrenia to someone she was dating. “My friends were very protective of me,” Tsai says. “They would tell me not to say anything right away. The analogy they used was ‘If you had cancer, who would you tell right away?’ Well, probably just my closest friends and family. They were right. I was taking these first and second dates way too seriously. It was like, ‘Hi, my name is Mindy, and I’m a schizophrenic.’” She adds, laughing: “I needed better boundaries!”
Today, Tsai works as a business development lead for a global consulting firm headquartered in Evanston, Illinois. She still works with the same colleagues as she did when she was was hospitalized. People will sometimes reach out to her through LinkedIn to ask about her memoir. She hopes the book can help change people’s misconceptions about schizophrenia, ideas that are usually based on films and television. “Most of the time, you get a very incomplete portrait,” she says. “Movies and TV present the actions, but they don’t present what’s going on inside the person’s brain. Inside the brain, the actions make perfect sense.”
Tsai hopes that candidly sharing her story with the world will help people open up about their own issues. “I know everyone’s experience is different,” she says. “Your brain may feel broken at times, but if you can trust somebody, then there are ways to find help.”