“Whenever I tell people I have schizophrenia, they always say, 'I thought you'd be banging your head against the wall in the psych ward.'
But maybe it's not their fault. Most people learn about this disease from movies, which almost always portray people as cruel, unpredictable, incompetent, and incurable. Despite great strides made in mental health awareness in general, schizophrenia is still not discussed as often as other mental illnesses.
So Culpepper opened an account on TikTok and decided to do what many others with the disease are unwilling or unable to do: talk about it. More than 690,000 people are now following her journey.
“It took me a long time to realize that I have schizophrenia for a reason,” Culpepper said, “so that I could make sure that no one felt alone and that their only option was to kill themselves.”
People who feel their schizophrenia is stigmatizedResearch shows they may experience worsening depression, social anxiety, and quality of life, as well as decreased self-esteem, social functioning, and support from loved ones. Stigma can also lead to social isolation, limited educational and employment opportunities, and poor living conditions.
Ultimately about 5% of people with schizophrenia die by suicide; The risk is highest when a person is just starting to show symptoms and has not yet been diagnosed or treated.
“Sometimes I fake it until I make it,” Culpepper said, “but I try to remind myself that whatever happens is temporary and I will get through it.”
Schizophrenia has not yet become a mainstream topic of mental health conversation
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 okay to not be okay. Despite all this effectiveness, conditions such as schizophrenia, as well as bipolar and obsessive-compulsive disordercan often be as taboo as ever.
ABOUT 1.5 million people in the US I have schizophrenia, like 24 million people all over the world. The disease affects men and women equally, although it occurs earlier in men (late teens or early 20s) and later in women (late 20s or early 30s). The condition is one of the 15 leading causes of disability worldwide, according to the National Institute of Mental Health, although not everyone considers it disabling.
The reality is that “everyone knows someone with schizophrenia, but they just don't know it because people hide it,” said Philip Janos, a psychology professor at John Jay College of Criminal Justice who studies the stigmas associated with mental illness.
When people avoid talking about schizophrenia and other disorders when discussing mental health, it confuses rather than normalizes.
“If we could change the way people feel about it, change the way people feel about sexual identity and orientation that people used to have a hard time hiding,” Janos said, “then people would realize how much more a part of life it is, and how much they know and love people who have it.”
One study found that from 1996 to 2018, stigmas associated with depression decreased, while Rates of schizophrenia have increased. In another study, researchers analyzed tweets posted in 2015 and 2016 and found that schizophrenia is most stigmatized mental illness. A study published last year found that nearly half of more than 13,000 tweets about schizophrenia published in 2018, were found to be stigmatizing.
The fear and misunderstanding around schizophrenia was so great 30 years ago that when clinical psychologist Dr. Xavier Amador worked at Columbia University's Schizophrenia Research Center, it took him three years to tell his colleagues that he had a brother with the disease.
“I was a professor of psychiatry and worked with other psychiatrists and psychologists, and I was afraid and ashamed that my colleagues would consider me to be 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 just as vulnerable to cultural stigma as anyone else.”
Even in 2023, stigma in the healthcare system will continue. People with schizophrenia often report feeling fired, removed from important decisionsthreatened to undergo treatment and dehumanized in medical institutions. Patients are often told they will never recover, are made to wait too long when seeking help, and are not given enough information about their condition or treatment options.
Amador accuses the entertainment industry of “turning people with brain differences into negative caricatures.” Remember the 1960 film. Psychosaid Amador, in which the protagonist experiences delusions and ends up becoming a murderer.. “The media's response to intense violence” also contributes to the spread of misconceptions about schizophrenia, according to Janos, who said a person's mental health history is often made public even if it has nothing to do with the crime they committed.
“The fact is that people with schizophrenia are no more violent or aggressive than anyone else in the general population, that much is clear,” Amador said. “There's nothing wrong with a person suffering from this disease, except that it may cause you a little discomfort because he talks about things that don't make sense to you. Well, welcome to politics in the United States.”
Living with schizophrenia is more than that
When scrolling through Culpepper's TikTok, you'll mostly find her laughing at all the times her hallucinations have gotten her into awkward positions.
Sometimes she accidentally grabs a real person, thinking it is a hallucination. “I would be upset,” Culpepper said. She works in a bakery and one day she handed over cookies to hallucinations; She later found the cookies on the floor, still in their wrappers.
Schizophrenia brought her closer to her husband, who also has this disease. He lived across the street and asked her to cut the grass one afternoon. A couple of dates later, Culpepper realized that Jonathan was still talking to himself.
“It didn’t take long before we both realized we had schizophrenia,” Culpepper said. “My husband hears everything and I see everything, so we help each other distinguish between what is real and what is not.”
Now they both work in the same place and can be close during difficult times. When she's worried, Jonathan helps her calm down; when he talks to people who aren't there, she lets clients know that he does that sometimes.
