A woman with schizophrenia told us what it's really like to live with incurable hallucinations
Rafi Letzter
A view shows the bell tower of the church in Saint-Etienne-du-Rouvray near Rouen in Normandy, France, where French priest, Father Jacques Hamel, was killed with a knife and another hostage seriously wounded in an attack on the church that was carried out by assailants linked to Islamic State. REUTERS/Pascal Rossignol
(Thomson Reuters)
When Rachel Star Withers was a child she saw demons everywhere.
That was how she understood the specters that flitted through her room at night, moved things around, and made faces at her from the branches of trees.
Raised in the Southern Baptist community of Indian Land, South Carolina, Star Withers used her faith to understand a universe that she said seemed "distorted."
"If the church was open, I was there," she said.
When she confided in church leaders about her visions, they told her she was seeing demons manifest.
"And I was like, 'Oh, OK, well I guess that makes sense,'" she said. "Creepy-ass monster hanging out watching me. At the time I'm thinking that makes sense. Yeah, it's a demon."
Until she was older she didn't realize her visions were all that unusual.
"You hear things like monsters under your bed, monsters in your closet," she said. "I just assumed that's what everyone was talking about. I just thought everyone saw them."
"It wasn't until I was in high school that I said something about it to my school friends. They were like, 'What are you talking about, Rachel?' And I was like, 'Oh crap — am I the only one that sees these?' But that was the first time I realized that this is actually weird, this isn't normal."
rachel star withers
(Rachel Star Withers, in a photo posted to her Twitter account.Rachel Star Withers)
"In some ways, [schizophrenia] is kind of the prototypical mental illness, because it represents madness," Jeffrey Lieberman, chair of Columbia University's department of psychiatry and a specialist in schizophrenia, told Business Insider.
People with untreated schizophrenia experience false beliefs, disorganized thinking, disorganized speech and behavior, delusions, and hallucinations. However, any one person with the illness might have just a couple of those symptoms.
Often, symptoms strike when people are in their late teens or early 20s, though Star Withers said she has lived with hallucinations her whole life.
"Every night I was terrified to go to bed," she said. "And I could watch [the demons] on the ceiling, moving around — these horrible faces. I'd see them outside. I'd see them on the trees and on the walls. Just monsters everywhere. A lot of them would stand in the corner of rooms."
She developed rituals and coping mechanisms.
"Like if I lay really, really still in the middle of the bed, and I didn't move, then for the most part they'd leave me alone."
At the same time, she had obvious symptoms of depression and anger. Her parents brought her to see doctors, but she never told them the full depth of what she was experiencing.
Lieberman said people with schizophrenia often experience symptoms severe enough to seek treatment during their first year or two out of high school. For Star Withers, that meant they struck while she was a student at a Christian missionary-training program in Texas at age 17.
I could watch them on the ceiling, moving around, these horrible faces.
Violent, terrifying, intrusive thoughts took root in her head. She imagined hefting a drill and driving through her skull. Her hallucinations grew more frequent, intense, and disturbing. She thought about suicide all the time and acted erratically.
Adults in the training program insisted she see their staff doctor, who diagnosed her with depression and prescribed medication. It didn't work.
Higher-ups at the school decided, in Star Withers' words, that she was "demon-possessed." They performed an exorcism.
"After it didn't work they were like, 'Well, the reason it didn't work was you want Satan in you,'" she said. They restricted her status in the program.
Time passed, the training program ended, and Star Withers returned to South Carolina. Almost immediately she left again, working for a month at a homeless shelter in Florida before accepting a mission at age 19 to the Czech Republic.
"That's when everything just spiraled out of control," she said.
Rachel Star Withers
(Rachel Star Withers, in one of her YouTube videos.YouTube/Rachel Star Withers)
She hallucinated every waking moment of the day and night. Her behavior grew, in her terms, "reckless" — leaping around, smashing her head into walls.
Everywhere she went, every time she looked in a mirror, she saw a vision of herself with no face. She took a blade to the edges of her jaw, as if to slice until she matched the apparition. She said she never intended to remove her face entirely, but hoped that a few cuts would calm the vision.
"When you're hallucinating and you're in a delusional state, things don't make sense," she said. "So I understand other people are like, 'Why would starting the cuts make it go away?' But that's kind of how your mind works — maybe if I feed it a little it'll stop being so bad." But it didn't help.
After it didn't work they were like, 'Well, the reason it didn't work was you want Satan in you.'
"I didn't know what to do. I was sick. And I was so scared. Because I didn't want to [cut off my face]. But I didn't really know what else to do, because I had no way of controlling anything. Just everything was falling apart."
Six months later, Star Withers' parents booked her a flight home from Prague. She was 20 years old.
That was January 2005. Star Withers is now 31, a college graduate, a professional stunt performer, and a YouTuber with 25,000 subscribers. She has a particularly hardy form of schizophrenia that doesn't respond much to medication, so she still hallucinates regularly.
In this way, Star Withers' condition is rare. "I'm one of those special gold-star kids," she said. Antipsychotics can lead to significant reductions in symptoms in 66% to 80% of schizophrenia cases. That leaves a small population of people, like Star Withers, with incurable hallucinations.
But when speaking with Star Withers you'd never know she actively hallucinated; her words are ordered and precise, and her tone is upbeat. She talks about her intrusive thoughts and visions with a kind of amused detachment.
After her stint in the Czech Republic, she saw a doctor in the US who diagnosed her with paranoid schizophrenia.
Lieberman said this is a particularly dangerous moment in the life of someone with the disease. Schizophrenia ranks third on the list of mental disorders in terms of suicide risk. But suicides tend to cluster in the months and years after diagnosis, when otherwise healthy people face the prospect of a lifetime of disordered behavior and disjointed reality.
For Star Withers, that period involved lots of time in front of a computer, Googling "schizophrenia."
"All I could find was, like, medical documents and serial-killer stuff," she said. "I was really freaked out by it. Because really all of my knowledge of schizophrenia came from what I saw on TV."
A few days after her diagnosis, she took a beach vacation. While watching TV one day, she landed on a "Law and Order" marathon. Two episodes in a row featured schizophrenic villains.
Around the same time, she started posting videos to the then brand-new website YouTube. Inspired by the web cartoon "Homestar Runner" and the "Jackass" spinoff "Wild Boys," she filmed herself performing dangerous stunts. In one early clip, she talks to the camera and munches on shards of glass. In another, she and her brother toss around a football wrapped in barbed wire.
"[Talking about] the mental disorder had nothing to do with it in the beginning," she said.
After determining that her hallucinations weren't responding to medication, Star Withers' psychiatrists prescribed sedatives.
"They didn't make the hallucinations go away. They just made me sleep all the time," she said.
She finished two years at a University of South Carolina satellite campus and then transferred to Johnson and Wales' Charlotte, North Carolina, campus. Frustrated with how little information there was on the internet about schizophrenia by people living with the disease, she posted a video with the title "Normal: Living with Schizophrenia." She was 22.
She talks about her parents, the three doctors she sees, and her fear of losing her medical insurance.
Other people with schizophrenia started writing her comments and emails. She made friends, gave advice to other people with the disease, and embarked on a kind of independent investigation of the illness — comparing her symptoms with those of the people who wrote to her.
I was like, I've seen 'One Flew Over the Cuckoo's Nest.' I'm going to be drooling on the floor.
But even as she developed a community online, she struggled in her personal life. She moved through her junior year in a haze, struggling to keep up with her fellow students. Her doctors recommended electroconvulsive therapy, or ECT.
Though it figures in pop culture as a kind of barbaric medical torture — a metal hemisphere enclosing the skull, arms strapped to the table, kicking legs, gargling screams — electroshock persists as a safe, if extreme, treatment for severe psychological disorders. Doctors administer zaps of electricity to the brains of patients under general anesthesia. The currents induce seizures, which can rearrange patients' brain chemistry and ameliorate even severe, untreatable depression.
In Star Withers' case, the goal of ECT wasn't to cure her schizophrenia but to help with her deep depression and paranoia. Worried about the treatment's side effects, she turned to her followers for advice.
"I was like, I've seen 'One Flew Over the Cuckoo's Nest.' I'm going to be drooling on the floor. I did not want to have it." But one friend with whom Star Withers had exchanged emails before wrote to explain how good it had been in her case. "And I was like, 'Oh, OK. Now I have a real person who's telling me actually it's not that scary. All right."
She went through with the treatment the summer before her senior year, when she was 23. The side effects were and remain intense: She has long gaps in her memory of the time before her ECT, and struggles with arithmetic. Still, she credits ECT with saving her life.
The treatment, along with antidepressants and therapy, allowed her to adjust to her symptoms.
She's developed her daredevil videos into a bona fide stunt career, working on TV shows and movies as a stand-in and stunt coordinator. She also spent four years as recurring character on the obstacle-course competition "American Ninja Warrior," though she never made it past the first obstacle. ("It's harder than it looks.")
On top of her stunt work, she's kept up with her YouTube channel. She posts regularly about her experiences and thoughts about schizophrenia, and keeps up with the stunts and antics. The danger level seems just a bit lower today than when the channel launched 10 years ago. A recent video showed her trying to hit a watermelon with a bullwhip and mostly seeming to smack her own body.
Her symptoms remain severe, though. She's developed an arsenal of coping mechanisms to address them. And she's matter-of-fact about her experience.
"I've been getting some really intense suicidal urges lately," she said at one point in our conversation, in a tone that another person might use to describe a mild headache. She said detachment makes it easier to deal with; she's headed to her psychiatrist soon to reevaluate her medication regime.
On a day-to-day basis, Star Withers manages her schizophrenia the way anyone with a severe chronic illness would. She takes medicine — antidepressants, not antipsychotics — and sees a doctor regularly to monitor her dosage.
I've probably been asked five different times in my life if I've ever killed anybody.
As with many people with mental illness, her symptoms ebb and flow. And she has routines and techniques that help her deal with her symptoms, like regular, intense exercise.
Until recently, she lived alone. But as her symptoms have grown more intense lately, she's moved back in with her parents. When she feels a particularly difficult period coming on, she asks them to monitor her.
Asked if she still goes to church, her answer is a flat "no."
Nowadays, Star Withers said one of the most frustrating aspects of her schizophrenia is how little people seem to understand it.
"I've probably been asked five different times in my life if I've ever killed anybody," she said.
Bad representations of mental illness in pop culture bother her, because she believes they fuel misperceptions of mentally ill people as dangerous psychopaths.
"I have not seen 'Suicide Squad,' but I hate the trailer for it where Harley Quinn is going, 'Ha-ha-ha — the voices told me to kill you all!' because that makes people think that's what crazy people look like. They're hearing voices all the time and talking to themselves," she said. "So on the internet I get messages a lot [from people] surprised that I seem so normal."
Here's what we do know about schizophrenia and violence.
Just 4% of violence in the US can be traced to mental illness at all. And to the extent that people with schizophrenia are more likely to commit acts of violence, it appears to be largely because they're more likely to slip through the cracks in the mental-health system and develop substance-abuse problems — in which case they seem to be no more prone to violence than other drug users. Schizophrenia itself appears to drive just a vanishingly small proportion of overall violence.
Lieberman notes that the kind of confusion and stigma described by Star Withers is a big part of the reason people with schizophrenia don't seek treatment soon enough. They misunderstand their symptoms and are embarrassed to describe them to doctors.
The world isn't made for people like us. It's made for 'normal' people. But so few people are actually normal.
Star Withers said it has sometimes made it hard for her to make a living. When she gets a new job, she goes to human resources — after the contract is signed — to explain her illness.
She lost one gig when all of her coworkers found out. At another, her manager took the opportunity to bully her. Seeing her struggle to fill out her time sheet because of her arithmetic issues, he'd make cracks to her coworkers who didn't know her condition. When she was startled at the sight of one of her hallucinations or her hands shook as a side effect of her medication, he'd joke, "Oh, Rachel's on drugs — Rachel's high today!"
"But now when you have a job everyone becomes your Facebook friend, whether you want them to or not. There is no separating work and home. So everyone pretty much now knows," she said.
According to Lieberman, Star Withers' life lines up with what most schizophrenic people can expect.
"The goal is full recovery, to resume a normal life," he said, adding that when people with schizophrenia don't recover it's often because they don't get enough access to treatment.
One of the challenges in studying outcomes for people with schizophrenia is that it doesn't behave entirely like other disorders. Schizophrenia patients are much more likely than those with other mental disorders to experience relapses and recurrent symptoms.
We know that medication helps as many as 40% of schizophrenia patients go for extended periods without symptoms. But the rubric for recovery — "Have you experienced a hallucination lately?" — may not account for people like Star Withers, who manage their symptoms, even if they can't eradicate them. While scientists are aware that some people with schizophrenia do well for years without antipsychotic medication, researchers have only just begun to canvas for patients so they can ask about their experiences in a systematic way.
As frustrating as ignorant people can be, Star Withers said she's most concerned with communicating directly with other people with mental illnesses.
"The one thing I always want to stress to people in the same boat as me is, you're not alone. There's so many people who have mental disorders, and honestly it's not that big a deal."
"The world isn't made for people like us. It's made for 'normal' people," she said. "But so few people are actually normal."
