When WebMD asked if I’d be interested in profiling people with schizophrenia, I hesitated. Weren’t they dangerous? Unpredictable? Would I have to visit a mental institution?
Turns out, I was guilty of the very stigma that I’d be writing about: the widespread perception that people with schizophrenia are violent, unstable, and beyond reason. But after immersing myself, I didn’t find any caricatures or movie villains. Instead, I found smart, thoughtful, driven individuals — people living with a mental illness, not defined by it.
Unfortunately, the stigma surrounding their psychosis makes treatment and daily life more difficult. At a time when depression, anxiety, bipolar disorder, and other mental health conditions are more embraced by society than ever, the estimated 2.5 million Americans diagnosed with schizophrenia remain at arm’s length. Those diagnosed with schizophrenia experience disruptions in their thought processes and perceptions, as well as in emotional and social interactions. Hallucinations and delusions can make this a severe and disabling condition.
Nearly 90% of people with schizophrenia report experiencing discrimination in social interactions, employment, housing, and health care. And there’s no celebrity poster child like Michael J. Fox raising awareness.
Nicole Gillen is the director of community engagement for the nonprofit Schizophrenia & Psychosis Action Alliance (S&PAA). She is also the mother of a 27-year-old daughter who has been managing the disease for six years.
“I have this beautiful human being of a daughter who is funny, smart, interesting, kind, and wouldn’t hurt a fly,” says Gillen, who also authored a handbook for caregivers. “She is everything you want in a human and in a child, who just happens to have this terrible illness that has changed the trajectory of her life. But it doesn’t fundamentally change who she is at her core.”
It affects men and women about equally, though the typical age of onset is earlier for men (ages 18 to 25) than women (ages 25 to 35).
You don’t have to believe Gillen or even the science or statistics. Instead, reach your own conclusions by listening to three people with schizophrenia (managed with medication) describe their lives.
Honest but Misunderstood
Sixty-three-year-old Theo Karantsalis has been dealing with schizophrenia ever since he says an angel visited him in his bedroom when he was 8. Although he excelled in math, science, and languages at school and eventually earned two master’s degrees, he often exhibited bizarre behavior, including refusing to bathe, skateboarding naked, fighting, diving off rooftops and cliffs, and believing people were trying to poison him. He tried taking his life twice (at ages 12 and 15) with pills and razor blades. (An estimated 5% of people with schizophrenia die by suicide, much higher than the general population.)
His second attempt landed him in psychiatric treatment, but he says he got little support at home from a mother with mental health issues herself and a father who was largely absent.
Karantsalis was in and out of treatment for the next 20 years. He managed to graduate from the Federal Law Enforcement Training Center and worked as a customs agent in San Francisco from 1992 to 1996, “until I started stamping passports with Flintstones stamps and singing over the loudspeaker. ... I guess you can say I’m stable until I’m not. I’ve been fired from every job I’ve ever had.”
Although he occasionally loses his train of thought and stutters, Karantsalis comes across as smart, well-spoken, and engaging. He’s been married for 30-plus years and has two sons in their 20s, the younger of whom has schizophrenia and lives with them in Miami, Florida. But he lives in a dualistic world, where he sees significant barriers between “us” and “you.”
“The stigma surrounding schizophrenia is the greatest barrier that we face,” he says. “We’re treated as dangerous, broken, and incapable because of our diagnosis. This discourages treatment, it strips away our dignity, and it excludes us from living in your world. I’ve been excluded by the police when they show up for a wellness check. They surround my house; they come in with lights and sirens. That’s not the way to approach somebody who may be having mental health issues. This stigma is in the courts, too. If I walk into a courtroom and tell the security guard I have multiple sclerosis, he will hold the door open for me. But if I tell him I have schizophrenia, he’ll call for backup.”
Karantsalis doesn’t expect to ever fully recover from his mental illness. He takes “about 20 medications” daily to manage his schizophrenia, MS, heart condition, and arthritis. He finds solace and support in his family, prayer, riding the train to the pool where he swims 30-60 minutes daily, and advocating for those like him. He is the vice-chair of the Miami-Dade County Commission on Disability Issues and helped found the Miami-Dade County Mental Advisory Board. Although he may seem high functioning, “to borrow a swimming metaphor, I’m struggling to stay afloat.” But he remains resolute.
“One of the most beautiful things about schizophrenia is this authenticity you have,” he says. “Those who live in our world shun conformity; we don’t pretend to be something we’re not. Others, they try to fit in, but we live as we are. That kind of honesty is misunderstood.”
“I believe that the meaning of life is making a difference in the lives of others, and that’s what I aim to do,” he concludes. “There’s a quote by my train stop from Martin Luther King [Jr.]: ‘Everybody can be great, because everybody can serve.’ Another quote I like is from Eleanor Roosevelt: ‘You must do the thing you think you cannot do.’ What do I think I can’t do? Things like this interview, speaking in front of important people at government meetings. ... But I do them because I must let others know that we want to be part of your world. So please, be a little more patient and compassionate.”
Invisible but Always Present
Better.
It’s the word that underlies everything for someone with schizophrenia. It’s the promise that gives them hope. It’s the six letters by which they measure progress (and the occasional setbacks). Without that word, there’s nothing.
“The biggest misconception about those of us with schizophrenia,” says Bethany James, 32, “is that we aren’t going to get better.” In other words, society assumes the diagnosis is a life sentence of instability, delusional thinking, and dangerous behavior.
“But better means so many different things,” she continues. “At first, better means not missing your doctor appointments and taking your meds so you don’t have any more episodes. Then better becomes having a place to stay and working a steady job. Next, better might be joining the church choir. Better is gradually regaining your sense of functionality and feeling that you’re a whole individual.”
That’s not a fantasy. Although schizophrenia is a lifelong disorder, about 25% of people diagnosed with it recover — meaning their symptoms are well controlled and they can live independently, says Christian Kohler, MD, a psychiatrist at the Penn Psychosis Evaluation and Recovery Center (PERC) who specializes in treating people with serious mental illness. “These are people who can marry, have kids, and to the public they don’t appear to have a mental illness.”
James knows. In her early 20s while studying at Colorado State University, she began feeling lonely, indecisive, anxious, and depressed for reasons she didn’t fully understand. She retreated into her dorm room and refused to leave or eat for a week. When she wasn’t sleeping, she paced the floor, reciting prayers and listening to God.
Finally, her dorm’s resident advisor summoned help. She was hospitalized and then sent to a local inpatient clinic where she was diagnosed with schizoaffective disorder — schizophrenia and a major mood disorder (depression). Her grandma came from Florida to take her back home to Punta Gorda. There she became a patient at Suncoast Behavioral Health Center in Bradenton, where they “helped put me back together.”
As with most schizophrenia patients, the road back was winding. She was an occasional inpatient at the health center. She lived in a group home for a while where she got arrested for fighting. But after 10 years, she is now living on her own in Denver, Colorado, where she works part-time for a publishing company, advocates for mental health (especially among African Americans), hopes to return to college, and dreams of starting her own T-shirt and handbag company. She has even written a book of poetry.
“I am better.”
But she knows better is a process. In one of her poems, she writes: “Mental health is not a trend; it’s a tender war some of us fight daily in secret.”
“Schizophrenia and other mental health disorders are invisible diseases,” she says. “When society doesn’t see a walker, crutches, a cane, or any other sign of debilitation, it assumes you’re OK. But for people like me, there’s a silent ongoing war with our morale that we must fight every day. That’s our determination to get better.”
Complex but Treatable
Going away to college is a big step, but for 18-year-old Stephen Dages it was a step off a cliff. Seven hours from his New Jersey home, “I started having these strange experiences,” he recounts. “I thought I heard people on campus and on the TV and radio talking about me like I was a jerk.”
These “auditory hallucinations” and “referential thinking,” as Dages later learned, are common symptoms of schizophrenia. The episodes became more frequent, eating away at his emotional stability and self-esteem.
Dages says his father had schizophrenia with symptoms including “strange religious experiences and violent outbursts.” Schizophrenia has a strong genetic component, and he believes the stress of his freshman year triggered its manifestation in him.
After struggling through two semesters, he confided in his mother, who encouraged him to see a psychologist. But even though he suspected what was wrong, the stigma held him back. “I thought people who went to therapy were weak, abnormal, or even crazy,” he says. “It was very difficult for me to take that step, but I didn’t want to end up like my dad.”
Dages says the talk therapy helped, as did an antipsychotic medication called Risperdal, which lowers dopamine levels in the brain. (Too much dopamine can cause delusions and hallucinations.) Nonetheless, schizophrenia is a complex disease that can take years to properly diagnose and treat. Dages transferred to a college closer to home, but the constant worry and sadness returned, as did the auditory hallucinations.
Finally, in 2007, he connected with Kohler at PERC. Dages credits PERC’s peer-support program for convincing him he’s not weak, weird, or any of the other labels society sticks on schizophrenia patients. Much like recovering alcoholics in AA, PERC participants draw support and confidence from sharing their experiences.
Dages gradually got his life back. By 2015, he’d earned a degree in accounting, landed a job, and found a romantic partner. But after that relationship ended, the dark specters returned. “I was not functioning well,” he says, “and although I didn’t want to take my life, I was heading in that direction.” After a weeklong inpatient stay, he emerged with new medications and perspective. “That was my turning point,” he says.
Since then, Dages has been doing much better. As a peer-support specialist at PERC, he now co-leads group sessions and is a mentor to others. His mother, Angela Fischer, will soon become a family peer-support specialist at Penn. He has worked at an Amazon fulfillment center for the last five years.
As he has changed, he sees the public perception of mental illness shifting as well. May was Mental Health Awareness Month, and for the first time that he recalls there were banners in his Amazon warehouse saying, “It’s OK to not be OK” and encouraging employees to seek help for their mental challenges.
“The temptation is to regard those of us with this disorder as crazy and dangerous,” he says, “but that’s not true. We have a chemical imbalance in our brains that’s treatable. We are not lunatics or violent. We are just normal people. I know now that I am a positive, kind, and loving person.”
