“Whenever I tell people I have schizophrenia, they always say, ‘I thought you’d bang your head against the wall in a mental ward.'”
But it might not be their fault. Most people learn about the disease through movies, which almost always portray sufferers as violent, unpredictable, incompetent, and incurable. Despite great strides in mental health awareness in general, schizophrenia is still not discussed as often as other mental illnesses.
So Culpepper opened a TikTok account and decided to do what many other people with the disease won’t or can’t: talk about it. Today, more than 690,000 people follow his journey.
“It took me a long time to figure out that I have schizophrenia for a purpose,” Culpepper said, “so that I can make sure no one feels alone and their only option is to kill themselves. “
People who feel their schizophrenia is stigmatized, research shows, may have worse depression, social anxiety, and quality of life, as well as low self-esteem, social functioning, and support from loved ones. Stigma can also lead to social exclusion, fewer education and employment opportunities and poorer housing conditions.
Ultimately, approximately 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.
“Some days I fake it until I make it,” Culpepper said, “but I try to remember that whatever is happening is temporary and I’ll get through it.”
Schizophrenia has yet to enter mainstream mental health discourse
We’ve never talked about mental health so much as we do today, thanks to decades of awareness campaigns and research that have taught us that it’s okay to be unwell. Despite all this work, conditions like schizophrenia, as well as bipolar and obsessive-compulsive disorders, can often be as taboo as ever.
In regards to 1.5 million people in the United States suffer from schizophrenia, as do 24 million people global. The disease affects men and women equally, although it appears earlier in men (late teens or early 20s) and later in women (late 20s or early 30s ). According to the National Institute of Mental Health, the disease is one of the top 15 causes of disability worldwide, although not everyone considers it debilitating.
The reality is that “everyone knows someone with schizophrenia, but they don’t know it because people hide it,” said Philip Yanos, a psychology professor at the John Jay College of Criminal Justice who studies the stigma associated with it. to mental illness.
When people avoid talking about schizophrenia and other disorders when discussing mental health, it mystifies them rather than normalizing them.
“If we could change the way people feel about having it, the way feelings about gender identity and sexual orientation have changed, which was once something that people had a hard time hiding,” Yanos said, “then people would realize how much more of a part of life it is and how much they know and love people who have it.
A study found that from 1996 to 2018, the stigma associated with depression decreased while those for schizophrenia have increased. In another study, researchers analyzed tweets posted in 2015 and 2016 and found that schizophrenia was the most stigmatized mental health condition. A study published last year found that nearly half of more 13,000 tweets about schizophrenia posted in 2018 were considered stigmatizing.
Fear and misunderstanding around schizophrenia was so strong 30 years ago that when clinical psychologist Dr Xavier Amador was working at Columbia University’s Center for Schizophrenia Research, it took him three years to tell his colleagues that he had a brother with the disease.
“I was a professor of psychiatry working with other psychiatrists and psychologists, and I was afraid and ashamed that my colleagues saw me as someone at genetic risk for schizophrenia,” said Amador, a former deputy executive director of the National Alliance on Mental Illness. “I knew a lot better, but I was as vulnerable to cultural stigma as anyone.”
Even in 2023, stigma in the healthcare system persists. People with schizophrenia frequently report feeling dismissed, excluded from important decisions, threatened with treatment and dehumanized in health facilities. Patients are often told they will never recover, are forced to wait too long when seeking help, and are not given enough information about their condition or treatment options.
Amador criticizes the entertainment industry for “reducing people with brain differences into negative caricatures”. Think of the 1960 movie psychologysaid Amador, in which the main character experiences delusions and ends up being a murderer. The media’s “reactive response to intensive violence” also contributes to misleading ideas about schizophrenia, according to Yanos, who said a person’s mental health history is often made public even when it has nothing to do with it. with a crime they committed.
“The fact is that people with schizophrenia are no more violent or aggressive than anyone else in the general population, the research is very clear,” Amador said. “There’s nothing scary about someone who has this disease other than it can make you a little uncomfortable because they talk about things that don’t make sense to you. Well , welcome to politics in the United States.
There is more to living with schizophrenia
Scrolling through Culpepper’s TikTok, you’ll mostly find her laughing at all the times her hallucinations have put her in awkward positions.
Sometimes she accidentally catches a real person thinking they are a hallucination. “I would be mortified,” Culpepper said. She works in a bakery, and once she handed a cookie to a hallucination; later, she found the cookie on the floor, still in its wrapper.
Her schizophrenia brought her closer to her husband, who also has the disease. He lived across the street and offered to cut her grass one afternoon. A few dates later, Culpepper realized that Jonathan kept talking to himself.
“It didn’t last very long before we both realized we were schizophrenic,” Culpepper said. “My husband hears things and I see things, so we help each other tell what’s real and what’s not.”
Now they both work in the same place and can be there for each other during times of stress. When she becomes anxious, Jonathan helps her calm down; when he talks to people who aren’t there, she lets customers know that he sometimes does.
