One September evening in 2017, Kendyl Culpepper hung out in the front yard with her father while they worked on commands with his dog Thor. The blistering Georgia sun set behind them as the father–daughter duo watched Thor obediently hop on his doghouse and run across the grass.
They talked about how they were going to squeeze the 80-pound dog into their tiny car, and her dad went on and on about how much Thor loves chicken nuggets from the fast-food chain Cook Out, Culpepper recalled.
The day was as run of the mill as it could get — except it wasn’t.
Culpepper’s father was dead, and he had been buried just a couple days prior. It wasn’t until she went back inside his house and saw her family going through his belongings that she realized their entire interaction was a hallucination. It felt so real that the next day Culpepper called her father to ask about Thor’s food. Several missed calls later, she had to learn her dad was dead all over again.
And again and again and again. Culpepper spent the next three weeks hallucinating similar interactions: One day her father mocked her as she mindlessly mowed crop circles in the yard; another day he joined her in the passenger seat for a car ride.
The recurring heartbreak led Culpepper to self-harm and thoughts of suicide. She called her doctor, who within 15 minutes prescribed an antipsychotic medication that she still takes daily. The medicine reduces her hallucinations dramatically — but on stressful days, she might still see her dad, other strangers, or random scenes like a hundred blue jays in her backyard.
“I was ready to absolutely just off myself because I couldn’t handle going through the grief over and over again of realizing that he was dead,” Culpepper told BuzzFeed News. “It was almost like my brain couldn’t handle all of it so I tried to create this false sense of reality to give myself safety.”
During a follow-up appointment a few days later, she received her diagnosis: schizophrenia, a chronic yet treatable neurodevelopmental disorder that affects how a person views reality, causing delusions, paranoia, hallucinations, and distorted thoughts.
Culpepper’s doctor had explained that her dad’s death, together with a marriage that she said was abusive and began about a year prior, most likely triggered the disease’s onset. Although the exact cause of schizophrenia is unknown, most scientists believe a combination of genetic and environmental factors play a role. The first sign that suggested Culpepper might be at risk for the condition happened when she was a child; she hallucinated that water was pouring from a Walmart ceiling when she was just 10 years old.
Although the diagnosis didn’t alter much in her life (besides taking daily medication and adding small lights in her bedroom to minimize nighttime hallucination scares), people around her began to change. Members of her church told her she was possessed by a demon, and close friends started to treat her differently.
“How can people know me for years and then just assume I’m crazy because I went through trauma and my brain didn’t know how to process it?” Culpepper said. “I work 40 hours a week. I own a house. I own a car. I’m fully capable of living life just like everybody else, even though I’m diagnosed with something that sounds horrible to the world.”
The more comments people made, the more Culpepper realized how little everyone knew about schizophrenia.
“Anytime I tell people I have schizophrenia, they’re always like, ‘I would have thought that you would be banging your head up against the wall in a psych ward.’”
But maybe it’s not their fault. Most people learn about the disease via movies that almost always depict people with it as violent, unpredictable, incompetent, and untreatable. Despite great strides being made in mental health awareness in general, schizophrenia still isn’t discussed nearly as often as other mental illnesses.
So Culpepper opened a TikTok account and decided to do what many others with the disease don’t want to or can’t: talk about it. Now, more than 690,000 people follow her journey.
“It took me a long time to understand that I have schizophrenia for a purpose,” Culpepper said, “so I can ensure nobody feels alone and like their only option is to kill themselves.”
People who feel their schizophrenia is stigmatized, research shows, can have worse depression, social anxiety, and quality of life, as well as lower self-esteem, social functioning, and support from loved ones. Stigma can also lead to social exclusion, fewer education and employment opportunities, and worse housing conditions.
Ultimately, about 5% of people with schizophrenia die by suicide; the risk is highest when a person is just beginning to have symptoms and hasn't yet been diagnosed and treated.
“Some days I fake it till I make it,” Culpepper said, “but I try to remind myself that whatever is happening is temporary and I’ll get through it.”
Schizophrenia has yet to enter mainstream mental health talk
We’ve never talked more about mental health than we do now, thanks to decades of awareness campaigns and research that have taught us that it’s OK to not be OK. Despite all that work, conditions like schizophrenia, as well as bipolar and obsessive compulsive disorder, can often be as taboo as ever.
About 1.5 million people in the US have schizophrenia, as do 24 million people worldwide. The disease affects men and women equally, although it emerges earlier for men (late teens or early 20s) and later for women (late 20s or early 30s). According to the National Institute of Mental Health, the disease is one of the top 15 leading causes of disability globally, although not everyone considers it disabling.
The reality is that “everybody knows somebody with schizophrenia, they just don’t know that they do because people hide it,” said Philip Yanos, a psychology professor at the John Jay College of Criminal Justice who studies stigmas related to mental illness.
When people avoid talking about schizophrenia and other disorders when discussing mental health, it mystifies rather than normalizes them.
“If we could change the way that people feel about having it, the way that feelings about sexual identity and orientation have changed, which used to be something that people took great pain to hide,” Yanos said, “then people would realize how much more a part of life this is and how much they know and like people who have it.”
One study found that from 1996 to 2018, the stigmas associated with depression decreased while those for schizophrenia increased. In another study, researchers analyzed tweets posted in 2015 and 2016 and found schizophrenia to be the most stigmatized mental health condition. A study published last year found that nearly half of more than 13,000 tweets about schizophrenia posted in 2018 were considered stigmatizing.
The fear and misunderstanding around schizophrenia were so bad 30 years ago that when clinical psychologist Dr. Xavier Amador was working at the Schizophrenia Research Center at Columbia University, it took him three years to tell his colleagues that he has a brother with the disease.
“I was a professor of psychiatry working with other psychiatrists and psychologists, and I was scared and ashamed that my colleagues would see me as somebody at genetic risk for schizophrenia,” said Amador, former deputy executive director of the National Alliance on Mental Illness. “I knew a lot better, but I was as vulnerable to the cultural stigma as anybody.”
Even in 2023, stigma in the healthcare system persists. People with schizophrenia frequently report feeling dismissed, excluded from important decisions, threatened to take treatments, and dehumanized in healthcare settings. Patients are often told they will never recover, are forced to wait excessive amounts of time when seeking help, and aren’t given enough information about their condition or treatment options.
Amador blames the entertainment industry for “reducing people with brain differences into negative caricatures.” Think of the 1960 film Psycho, Amador said, in which the main character experiences delusions and ends up a murderer. The media’s “reactive response to intensive violence” also contributes to the misleading ideas about schizophrenia, according to Yanos, who said that a person’s mental health history is often made public even when it has nothing to do with a crime they’ve committed.
“The fact is that people with schizophrenia are no more violent or aggressive than anybody else in the general population, the research is abundantly clear,” Amador said. “There’s nothing scary about someone who has this illness other than it may make you a little uncomfortable because they’re talking about things that aren’t making sense to you. Well, welcome to politics in the US.”
There’s more to life with schizophrenia
Browsing through Culpepper’s TikTok, you’ll mostly find her laughing about all the times her hallucinations have put her in awkward positions.
Sometimes, she accidentally grabs onto a real person thinking they're a hallucination. “I would be mortified,” Culpepper said. She works at a bakery, and one time she handed a cookie to a hallucination; she later found the cookie on the floor, still in its wrapper.
Her schizophrenia has brought her closer to her husband, who also has the condition. He lived across the street and offered to cut her grass one afternoon. A couple dates later, Culpepper realized Jonathan kept talking to himself.
“It didn’t last very long before we both realized we had schizophrenia,” Culpepper said. “My husband hears things and I see things, so we help each other distinguish what’s reality and what’s not.”
Now they both work at the same place and are able to be there for each other during stressful times. When she gets anxious, Jonathan helps calm her down; when he talks to people who aren’t there, she lets customers know he just does that sometimes.
“We actually make quite the pair,” said Culpepper, who plans on having children some day, even though people online beg her not to.
“Even if my child has schizophrenia, it’s not going to change anything about who they are, because I would obviously encourage medication, therapy, all those things,” Culpepper said. “I’ll just try to be a light for them and help them to see that they’re not crazy. It’s who they are and that’s OK.”
When asked how she maintains a positive attitude despite the misunderstandings and stigma, Culpepper said faith has kept her grounded.
“The only way I have been able to find joy in the midst of all the trauma has been through Jesus,” Culpepper said. “I had to leave the church I was going to when I was diagnosed because of how I was spoken to, but I recognized it wasn’t God that hurt me, it was the church.”
Without treatment, however, Culpepper wouldn’t be where she is today, as is the case with many people who have schizophrenia.
A cocktail of antipsychotic medications, educational programs, cognitive behavioral therapy, and other necessary programs to treat potential issues with substance use, for example, can help people with schizophrenia manage their symptoms and achieve their goals like everyone else.
How you can help loved ones with schizophrenia
When Culpepper first shared her experiences with hallucinations online, some people tried to convince her she was a medium who saw dead people and that she needed to “embrace” her gift.
The comments made Culpepper so delusional, she told us, that she stopped taking her medication. What followed was the scariest hallucination she’s had to date: She saw an unrecognizable man open her front door and charge at her with a knife in hand. The glass Culpepper was holding fell and shattered on the ground as she prepared to defend herself.
That leads us to suggestion number one: Don’t try to convince people with schizophrenia that they don’t have the disease or discredit any of their experiences.
“It can be dangerous to say things like that to people with schizophrenia because they could believe it and go off their medicine like I did,” Culpepper said.
In the event you’re with someone experiencing a psychotic episode, try to avoid jumping to statements like “you’re safe” without first listening to the person’s concerns, Amador said. Instead, ask them to explain what they’re hearing, seeing, or feeling, then reflect it back to them “so they feel heard and understood, which will help dissipate anxiety.”
If someone with schizophrenia is talking about killing themself, you should contact the most appropriate crisis team, whether that’s via 911 or the 988 suicide hotline. Rarer are scenarios involving planned violence against others, Amador said, because the majority of people with the disease never act on hallucinations telling them to commit harm. Still, you should “take those threats seriously and get the person hospitalized” if needed, he said.
Otherwise, you’ll want to remember to be respectful and supportive. Helping friends or family with schizophrenia seek and stay in treatment is another way to be positively involved.
If you have schizophrenia and you’re planning on telling others about it, begin by asking them what they know about the disease to better understand any preconceived notions they might have about it. Then explain how the disease affects you while assuring them that your diagnosis doesn’t mean you’re any more violent or impulsive than the next person.
Yanos also recommends seeking out your local National Alliance on Mental Illness organization to take advantage of the programs and other support they provide, like the “In Our Own Voice” presentations that offer personal perspectives of different mental health conditions. The Hearing Voices Network is another resource for people to openly discuss their auditory and visual hallucinations, free of judgment.
“Find other people with schizophrenia who are in recovery. See people who are doing well,” Amador said. “You can have a realistic hope about your future, or if it’s a loved one, a realistic hope for their future. People do get better.” ●
Dial 988 in the US to reach the National Suicide Prevention Lifeline. The Trevor Project, which provides help and suicide-prevention resources for LGBTQ youth, is 1-866-488-7386. Find other international suicide helplines at Befrienders Worldwide (befrienders.org).