What It’s Like to Live with Schizophrenia
Thirty-one years ago Elyn R. Saks was diagnosed with schizophrenia. Her prognosis was grave: she wouldn’t be able to live independently, hold a job or find love.
After her hospitalization at 28 years old, a doctor suggested she work as a cashier. If she could do that, they’d reassess her abilities and possibly consider a full-time job.
Today, Saks is the Associate Dean and Orrin B. Evans Professor of Law, Psychology and the Behavioral Sciences at the University of Southern California Gould Law School. She’s a mental health advocate and the author of a powerful memoir, The Center Cannot Hold. And she is happily married to her husband, Will.
As Saks writes in this New York Times piece, “Although I fought my diagnosis for many years, I came to accept that I have schizophrenia and will be in treatment the rest of my life. Indeed, excellent psychoanalytic treatment and medication have been critical to my success. What I refused to accept was my prognosis.”
Saks seems like an anomaly because when we think of schizophrenia, we picture “the screaming, toothless woman on the street; the guy on the bus who hasn’t bathed and bats away at things no one else can see; maybe, if we’re ‘lucky,’ a John Nash-type who has ‘imaginary’ friend-hallucinations, but is also a genius,” said Esmé Weijun Wang, a writer, editor and mental health advocate.
There is a wide spectrum of people with schizophrenia. Indeed, some are homeless and don’t have access to treatment or have stopped their treatment. But many are living well with schizophrenia.
Writer, photographer and Psych Central contributor Michael Hedrick was diagnosed with schizophrenia eight years ago. “I’ve never really heard voices except for a few isolated incidents and I’ve never had hallucinations. For me it was mainly psychosis, paranoia and delusions.” He’s had delusions about being a prophet and hearing secret messages from the TV and radio. He was sure his psychiatrist was a quack hired by his parents to convince him he was crazy.
“Today, I would say I’m fairly confident in proceeding with an everyday normal life whereas, in the beginning, it was a struggle for me to even make eye contact with someone or go into a store without feeling like the world was collapsing.”
Hedrick described schizophrenia as “a devil on your shoulder who whispers nasty stuff in your ear and no matter what you do, he won’t go away. Eventually you learn to accept him as a kind of companion, albeit a companion you don’t like but a companion nonetheless. It feels almost like a burden that you eventually get strong enough to carry. Baggage is an apt word.”
Wang has schizoaffective disorder, a combination of positive and negative symptoms of schizophrenia with an affective disorder (she has the bipolar type). Recently, she penned this piece on her experiences with Cotard’s delusion, a rare, false and fixed belief that one is dead.
During a moderate to severe psychotic episode, she experiences terrible confusion and agitation.
“…[T]hat kind of off-the-charts level of confusion and agitation isn’t often visible to others. People who know me might be able to tell that something’s wrong, but not that I’m drowning in the idea that I am literally and inescapably in Hell.”
“The feeling is like your insides are on fire. Your mind is on fire. Your outsides are on fire, but no one can see any of it. It is an invisible, panic-driven torment.”
(This piece includes more descriptions of what it’s like to have schizophrenia.)
“I try everything,” said Wang, also author of Light Gets In. She takes medication and participates in different types of therapy. She also focuses on eating well and getting enough sleep and plenty of rest.
“I try not to become overly stressed – much easier said than done, I must say, but when your actual sanity depends on it, you really make an effort. I’ve made sure that I have a terrific support team that I trust. I’ve also become much more spiritual since the worst of it started.
“My daily routine is getting up at 6 every morning, coffee and a bagel; going to the coffee shop or sitting at my desk at home and doing my work for the day; getting lunch; doing errands; chill out time at home before dinner; then dinner and taking my meds; watching TV or reading until bed at 9. It sounds pretty boring but it keeps me sane (literally and figuratively).”
Hedrick also pays close attention to his symptoms. For instance, if he notices he’s feeling sadder or more paranoid than usual, he knows he’s doing too much or stressing himself out. That’s when he takes a few days to regroup and focuses more intently on his self-care.
Wang is aware of her condition every day, even when she’s not experiencing an episode. “In that sense, it affects my daily life because even if I’m not actively ill, I am, deep down, afraid of becoming ill at any moment. On the flip side, I more greatly appreciate life — at least, I think I do. I do more than I did before experiencing the worst of it.”
Over time, and with the right medication, Hedrick’s symptoms have gone from “terrifying to manageable to mere second thoughts.” For instance, he said, “if you’re sitting in a coffee shop or something and you hear someone laugh, there’s a part of you that thinks they’re laughing about you or that they’re making fun of you. That notion would have destroyed me eight years ago; today it’s just like ‘Are they talking about me? Wait, nope, I’m OK.’”
People with schizophrenia – and other mental illnesses – not only have to manage a challenging illness, they have to deal with stereotypes and negative attitudes.
“It’s been shown that people with mental illness are much more likely to be victims of violent crime than perpetrators. But thanks to the media’s coverage of tragedies (and the inevitable struggle to place the blame somewhere), mental illness has been used as a scapegoat for the sick things people do,” Hedrick said. “That’s not fair.”
It’s very hard not to internalize the belief “I guess I’m not worth anything anymore,” Wang said. In the last year she’s been focusing on working through the self-stigma.
“I was raised to value my intelligence and my intellect, but that’s become an increasingly frightening thing to base my self-worth on as my disorder progresses. I remind myself that I am loved, that I am loving. I remind myself of my roles as a spouse, a dog mom, a sister, a friend.”
Wang would like readers to know that it’s possible to live a good life with the illness. “You are still you.”
Hedrick agrees. “If you take the steps to recovery, it’s really not as bad as it seems; you definitely get used to it. You get used to the shifts, and you come to expect certain things. It’s definitely possible to be content with a mental illness if you do the work.”
Saks shares a similar sentiment in The Center Cannot Hold. “…the humanity we share is more important than the mental illness we may not. With proper treatment, someone who is mentally ill can lead a full and rich life. What makes life wonderful – good friends, a satisfying job, loving relationships – is just as valuable for those of us who struggle with schizophrenia as for anyone else.
“If you are a person with mental illness, the challenge is to find the life that’s right for you. But in truth, isn’t that the challenge for all of us, mentally ill or not? My good fortune is not that I’ve recovered from mental illness. I have not, nor will I ever. My good fortune lies in having found my life.”
* Photo courtesy of Esmé Weijun Wang
Tartakovsky, M. (2018). What It’s Like to Live with Schizophrenia. Psych Central. Retrieved on September 20, 2020, from https://psychcentral.com/blog/what-its-like-to-live-with-schizophrenia/