This Woman Hallucinated That Her Dead Father Was Still Alive. Now She Uses TikTok To Counter Schizophrenia’s Stigma.

“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.