For Ashley, a young African-American woman living with schizophrenia, her experience with the chronic, severe and disabling brain disorder began when she started hearing voices. “The voices told me I was a dishonor to my family,” Ashley says. Her symptoms got progressively worse while she was in college. Ashley began experiencing hallucinations and delusions. She became paranoid and suspicious of people because she thought they planned to harm her. “I didn’t understand what was happening to me,” Ashley says.
What was happening to Ashley was that she’d descended into psychosis, the inability to distinguish fact from fantasy. She remained in this state—unaware something was wrong and that she needed help—until a personal crisis forced her to face the reality of her condition.
While in a psychotic state, Ashley stole a military truck from an airport and was arrested. At the time, the police didn’t know about her mental state, and her condition continued to deteriorate. Eventually, Ashley shut down. She also stopped cooperating with her lawyer. “While in jail, I stopped eating, drinking, speaking and living,” she says. Law enforcement officials thought her behavior was strange, but it wasn’t until her family pressed her attorney and the law enforcement officials to give her a competency exam that the nature of her problem became clear. Ashley failed the competency test, and doctors diagnosed her with schizophrenia.
Still gripped by symptoms brought on by her condition—paranoia and suspicion that people were trying to harm her—Ashley remained in denial about her illness. For a while, she refused to take her medication. But under the care of a team of doctors, Ashley eventually responded to preliminary treatment that helped establish trust between her and her caretakers. At this point, Ashley committed to getting educated about her schizophrenia. She gained a better understanding of the illness and learned how to cope with her condition.
Today, Ashley continues working hard at her recovery. As part of her treatment she became an advocate for schizophrenia awareness; it’s a way to help others become educated about the illness—and to keep herself on track. “I wanted to give back to the community because they contributed to my recovery,” Ashley says. “I consider the treatment I received a blessing, and I want to do what I can to also help other people as they go through recovery.”
One of the biggest challenges to recovering from schizophrenia, however, and what bothers Ashley most about the illness is that the condition is largely still misunderstood and stigmatized. Many view people with schizophrenia as being violent and dangerous. But while the paranoia and delusions triggered by the illness do create a higher risk of aggressive behavior in people who aren’t in treatment, that is still the exception, explains Xavier Amador, PhD, a clinical psychologist from New York University.
In actuality, the research is clear that the risk of violence among people with schizophrenia is small, according to the National Institute of Mental Health. However, people with the illness do attempt suicide much more often than others.
Another major misconception about schizophrenia is that the disorder means someone has split personality or suffers from multiple personality disorder. The confusion may be because the word “schizophrenia” means “split mind.” But this literal translation doesn’t describe the condition.
“Schizophrenia is not having a split personality,” Amador confirms. “And it’s not caused by bad mothering. That may sound silly to some, but a lot of people still hold onto this old notion because that’s what 1950s and ’60s American psychiatrists thought at that time.”
But what exactly causes schizophrenia? The simple answer to this question is that, currently, doctors don’t know. Theories about what causes the condition include those who say it’s caused by traumatic experiences, poverty or genetics. But the truth is there are multiple factors that may contribute to someone developing schizophrenia. “It’s a complex illness that can develop from a combination of factors,” says Annelle Primm, MD, MPH, the deputy medical director of the American Psychiatric Association (APA) and director of APA’s Office of Minority and National Affairs.
In addition, another theory proposes that schizophrenia may be drug-induced. But this is a myth, Amador says. “People may develop some schizophrenia symptoms when they use certain drugs, such as amphetamines or cocaine, but the symptoms only last for as long as the drug is in someone’s system,” he explains. “And that’s not schizophrenia; that’s psychosis. Schizophrenia is not caused by drugs.”
Still another myth is that people with schizophrenia can’t function normally. But this also is untrue. With prolonged treatment and proper management, those affected by the condition can lead productive lives with their families and in the community.
“There are effective treatments available to manage schizophrenia symptoms,” Amador says. “And while there’s no cure for the condition, besides managing the symptoms, you can also eliminate or reduce them. You can work and have relationships and relief.”
Nonetheless, many people are terrified of the condition. Making matters worse, stigma often remains a barrier to people’s better understanding and acceptance of mental illness. For schizophrenia, that stigma is well documented.
In study findings about African-American attitudes and perceptions of schizophrenia, published in a 2006 issue of the Journal of the National Medical Association, researchers found that, in general, even among groups of black people from different generations, confusion reigned about mental disorders. And when it came to schizophrenia each group thought people with the condition were “crazy,” inherently dangerous and violence-prone. Even so, everyone believed those with the illness could manage their symptoms and function normally if they stayed on prescribed medication.
As previously mentioned, drug therapy does help relieve many schizophrenia symptoms. The key is to get an accurate diagnosis. For African Americans—a population that’s overdiagnosed with the condition—this is often a difficult task.
Misdiagnosis is more common, Primm says, when mental health professionals don’t use standardized diagnostic techniques, and instead rely on an assessments and interpretations of what the patient says.
African Americans are also sometimes incorrectly diagnosed with schizophrenia because some clinicians aren’t familiar or comfortable working with African-American patients, Primm suggests. And so, because they’re not culturally competent, they may misunderstand some black people’s seeming paranoia.
For example, over the centuries African Americans have developed a survival skill called healthy paranoia. As Primm explains, “Black people had to learn to be suspicious and very careful to protect themselves in adverse environments, and so this level of suspiciousness of others or feeling that others may be against you is actually an adaptive kind of approach to life as opposed to something that should [always] be seen as [being] pathological.”
What’s more, studies show that African Americans more commonly experience hallucinations and delusions [common schizophrenia symptoms] even when they don’t have schizophrenia, Primm explains. That’s because schizophrenia is not the only mental illness in which delusions and hallucinations occur. These symptoms can also occur in mental illnesses such as depression and bipolar disorder.
“Major depression in particular is probably seven times more common than schizophrenia is,” Primm says. “And so we try to educate mental health professionals that a schizophrenia diagnosis should only be made after other more common illnesses have been ruled out. We stress this because schizophrenia tends to be thought of as more severe and much less common than some of the anxiety and mood disorders.”
Clinicians base a schizophrenia diagnosis on several groups of symptoms: positive, negative and cognitive. Positive symptoms derive their name from the fact they are an excess or distortion of normal functions. Some positive symptoms include delusions and hallucinations, such as the voices Ashley thought she heard. Negative symptoms are an absence or decrease of normal functions. Some negative symptoms include a lack of expression, the inability to start and complete activities, a habit of engaging in pointless conversations and a loss of interest in life—all signs Ashley experienced.
“Negative symptoms can be some of the most disabling aspects of the illness because people have such apathy and lack of motivation they don’t feel like doing anything, including taking care of themselves,” Primm says.
Cognitive symptoms are those that involve difficulty engaging in thought processes, such as understanding information, paying attention and remembering things, all of which Ashley experienced.
Currently, to treat schizophrenia doctors double-team the condition with a two-part defense: antipsychotic medications and psychosocial therapy. “Drug treatment for schizophrenia is the foundation for at least 85 percent of people with the illness,” Amador says. “You need the medication to diminish and extinguish schizophrenia symptoms and the delusions. But, as with treating other illnesses, medication is not enough. Patients must change their lifestyle, understand their symptoms and include their family, community and close friends and then participate in support groups.”
Once doctors get schizophrenia symptoms under control with meds, they steer patients to nondrug treatments. Specifically, these include social skills training to improve the patient’s communication and social interactions; family therapy to support and educate the patient’s loved ones about schizophrenia; job support to help people living with the condition find work and remain employed; and individual therapy to help patients manage their illness by learning how to cope with stress and identify early signs of relapse.
But there’s also another important aspect of schizophrenia treatment that mental health organizations such as the Substance Abuse and Mental Health Services Administration stress: recovery. Currently, health professionals apply this concept to mental illness treatment in general and work to make sure the public understands that individuals with mental disorders such as schizophrenia can hope to lead productive and meaningful lives.
As Primm explains, “The whole concept of recovery is about injecting hope because some people with illnesses like schizophrenia felt like they were being written off by society. People with mental illnesses have rights, and the goal for mental health professionals is to work in partnership with them to ensure they get the opportunity to improve the quality of their lives.”
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