Schizophrenia and the people living with it are highly misunderstood. The name itself is misleading: Schizophrenia means “split mind” in Latin, but the illness doesn’t cause “split,” or multiple, personalities.

One in every 100 people — approximately 2 million individuals in the United States alone — is living with schizophrenia, a condition that can significantly impact daily life and well-being.

Here’s what you should know about schizophrenia.

What is schizophrenia?

Schizophrenia is a mental disorder that can cause hallucinations, delusions and disorganized movement and speech. It interferes with thinking and motivation to a degree that can be disabling. These symptoms, which are features of psychosis (losing touch with reality), differ among people in severity and frequency. People are usually diagnosed between the ages of 16 and 30, and women tend to have a later onset than men. Early, consistent treatment eases symptoms, while stress, alcohol and illegal drugs tend to bring on or increase the intensity of symptoms.

Despite often being portrayed as violent, people with this illness aren’t any more violent than other people — in fact, they may be more vulnerable to being targets of violence.

What causes schizophrenia?

While schizophrenia has no known cause, studies have linked genetics, substance use, brain injury and stress with the appearance of symptoms.

Who does schizophrenia affect?

Rates of schizophrenia don’t vary greatly across the world. About 1% of the population live with the mental illness, and women and men are equally affected. In the U.S., around 2 million people, or 1 in 100, are believed to have schizophrenia .

What are signs of schizophrenia?

Schizophrenia is often misdiagnosed and tough to detect early. Its first warning signs are also symptoms of other mental illnesses, such as depression, substance use or bipolar disorder. The Schizophrenia & Psychosis Action Alliance recommends consulting a mental health professional if you notice drastic behavioral changes in a loved one. Early diagnosis and prompt treatment can improve outcomes.

Early signs of schizophrenia can include:

• Dramatic weight losses or gains
• Inattention to hygiene
• Problems understanding others
• Troubled relationships
• Poor school performance
• Reduced motivation
• Social withdrawal
• Extreme emotional reactions, such as outbursts, yelling or uncontrolled crying

Later-stage symptoms of schizophrenia fall into three categories:

• Psychotic symptoms are sometimes called “positive” symptoms because they’re abnormally present. Psychotic symptoms change the way a person understands and interacts with the world. They include hallucinations — sensing things that aren’t there — or delusions — strong beliefs that seem irrational to others. Psychotic symptoms can include hearing voices, believing you are being followed or believing you’re a famous or historical figure. These symptoms seem very real to the person experiencing them.
• Negative symptoms refer to abnormally absent traits, such as flat emotional expressions, withdrawal from social contact, reduced motivation, decreased speech and a lowered experience of pleasure. People with negative symptoms use a monotone voice, make few facial expressions or could even stop moving and talking at all — a condition known as catatonia. Negative symptoms can sometimes be confused with symptoms of depression.
• Disorganized and cognitive symptoms refer to confused and disordered speech and thinking, impaired decision-making and the inability to plan and carry out everyday activities like grocery shopping. Managing cognitive symptoms through treatment can vastly improve everyday functioning and the ability to live independently.

How is schizophrenia different for women vs. men?

The age of diagnosis and symptoms of schizophrenia can differ for men and women. Schizophrenia tends to present at an earlier age in men — in their late teens to mid-20s — while symptoms in women usually show up in their late 20s and early 30s.

Late-onset schizophrenia, which presents after age 45, is more common in women. Some studies suggest that this is explained by the declining levels of estrogen during perimenopause and menopause. Symptoms of late-onset schizophrenia can include severe paranoid delusions, visual and olfactory (smell) hallucinations, and tactile hallucinations that can feel like bugs crawling on the skin.

Overall, women are more likely to experience the emotional instability that can come with any type of schizophrenia. Symptoms can include:

• Depression
• Impulsivity
• Emotional instability
• Sexual delusions

How to get a diagnosis for schizophrenia and seek care

Family and friends can play a critical role in the diagnosis of schizophrenia because people with this mental illness are often unable to recognize they have it. Identifying the disease and starting treatment greatly improves a person’s odds of reducing psychotic episodes and successfully managing the illness.

Unfortunately, there is no single test that can diagnose schizophrenia, but a mental health professional can diagnose the condition by watching and evaluating a person’s symptoms over the course of six months. During this time, the medical team will rule out other possibilities, such as other mental illnesses, substance misuse and brain tumors.

A primary care physician can help refer you to a mental health specialist. For the first appointment for you or a loved one, it will help to prepare:

• A list of observed symptoms, even those that don’t seem to be related to schizophrenia or mental illness
• A family health history, including mental illnesses
• Key information about stressors or life changes
• A list of any medications or supplements currently taken
• A list of questions you or your loved one might have

How is schizophrenia managed?

There’s no cure for schizophrenia, but there are treatment options that can reduce or control symptoms, prevent future psychotic episodes and improve a person’s daily functioning. There are several antipsychotic medications available as well as newer treatments. One of these newer treatments is a recently approved muscarinic agonist, which means that it stimulates certain types of receptors in your body. This is the first medicine of its kind, and it takes a new approach to treating schizophrenia symptoms while avoiding burdensome side effects associated with other antipsychotics. Some medications are taken by pill daily, while others can be given by injection once or twice a month. The prescribing doctor’s goal is to find the medication that controls a person’s symptoms best at the lowest possible dose.

Medication should be taken as part of a comprehensive plan that includes social support and therapy. Examples of these include talk therapy, vocational and social skills training, and employment and education services. People who coordinate their medical care with these supports are known to have fewer acute episodes and hospitalizations.

Other factors that contribute to better quality of life for people living with schizophrenia include proactively managing triggers and stress, maintaining good sleep habits, avoiding alcohol and drugs, and prioritizing social connections.

What are common barriers to treatment and wellness for those with schizophrenia?

One of the challenges in treating schizophrenia is ensuring continuity of care. This includes supporting people in consistently taking their medications and accessing vital services. A key factor is that psychosis can alter perceptions of reality, making it difficult for individuals to recognize their condition or the need for treatment. This, and other factors, result in around 1 in 2 people with schizophrenia discontinuing their treatment — a statistic that illustrates why the average schizophrenia patient’s life expectancy is shortened by an average of 28.5 years.

Another barrier to treatment is that there is a significant stigma surrounding schizophrenia because it’s often misunderstood, which may be partially due to how it has been portrayed in mainstream media. The stigma can come from outside but also from within, and any stigma — regardless of the source — can prevent people from seeking medical help and continuing with treatment.

The financial toll of schizophrenia can also be steep. Direct healthcare costs represent part of the financial burden, while factors such as being unable to work and having complex social service needs make schizophrenia more expensive than other chronic medical conditions.

Insurance can also create barriers to accessing treatment. Antipsychotic medications are covered under Medicare Part D, Medicaid and most private health insurance policies, however, even with coverage, the specific drug you need may not be covered by your plan — or even if it is, depending on what tier level it is, it could still be expensive.

Also, many insurance companies use utilization management programs, which apply cost management tools such as step therapy and prior authorization for complex conditions such as schizophrenia. Step therapy requires that you try and fail certain treatments before others are covered by your insurance. And prior authorization requires that you get permission from your insurance company before it will pay for it. This can lead to people being forced to try a number of treatments that don’t work for them or being stuck with older medications because newer ones are more likely to require step therapy and prior authorization. These extra requirements can keep people from getting the medication or treatment they need in a timely manner — or even at all.

Lack of access to treatment can lead to increased rates of emergency room visits, hospitalizations, imprisonment and experiencing homelessness among people with schizophrenia.

Still, the vast majority of people with the illness are not homeless, and live with family, in group homes or independently.

Living with hope and dignity

Although schizophrenia is an incurable mental illness, it can be managed successfully with a combination of medication, therapy and social support, enabling people living with schizophrenia to lead lives full of hope and dignity.

Resources

American Psychiatric Association

Current Clinical Trials for Schizophrenia

National Alliance on Mental Illness

National Institutes of Mental Health

SAMHSA Treatment Finder

Schizophrenia & Psychosis Action Alliance

This educational resource was created with support from BMS, a HealthyWomen Corporate Advisory Council member.