How stigma about schizophrenia impacts caregivers

Schizophrenia is a severe mental illness that affects how a person interprets reality. People with schizophrenia experience symptoms such as hallucinations and delusions, as well as disorganized speech, behavior, and thinking.

While these symptoms can be controlled with medications and other therapies, there is no cure for schizophrenia, and the condition can make it difficult for a person to live independently. As a result, many people with schizophrenia rely on the help of a caregiver—a partner, parent, sibling, relative, or even a friend that helps them navigate the challenges of living with the condition, including treatment.

Schizophrenia and stigma

Like many people living with a mental health disorder, people with schizophrenia often experience stigma. Stigma is a negative attitude directed at a person because of a quality that makes that person different. Stigma toward people with schizophrenia is often fueled by fear, lack of understanding, and the way the condition is portrayed in media and pop culture.

Experiencing stigma does not stop with the person who is diagnosed with schizophrenia. As a caregiver, loved one, or friend of someone living with schizophrenia, you may also find yourself stigmatized by association.

Consequences of stigma

Stigma is not something that should be taken lightly by caregivers. Being on the receiving end of stigma can affect how you feel about yourself, how you feel about your loved one, how well you function as a caregiver, and your own mental health. For example:

• Stigma can lead to feelings of shame, loneliness, and lower self-esteem.
• It can cause people to withdraw from social situations and relationships.
• It can contribute to feelings of resentment or bitterness toward the loved one you are caring for (normal feelings that many caregivers struggle with at times).
• It can contribute to “caregiver burnout,” when a person becomes mentally, physically, and emotionally exhausted as a result of the demands of being a caregiver piled on top of the demands of everyday life.
• It can make it harder to ask for help from others and seek care for yourself and your loved one.

In other words, stigma can make life a lot harder for people with schizophrenia and their caregivers.

Mental illness stigma in BIPOC communities

The experience of living with a mental health disorder or caring for someone with a mental health disorder can vary from one community to another. Many BIPOC (Black Indigenous People of Color) Americans encounter greater levels of stigma—and different types of stigmas—associated with mental illness and treatment for mental illness.

When seeking care for a mental health disorder, it can help to seek out what is called culturally competent care—healthcare providers with similar cultural backgrounds to your own, or experience treating people with similar cultural backgrounds to your own.

What can you do about stigma?

Like many of life’s challenges, dealing with stigma is often a matter of focusing on what you can control and finding healthy ways to cope with what you cannot control:

• Prepare to talk about schizophrenia. One of the biggest contributors to stigma is a lack of understanding about the condition. Learning as much as you can about schizophrenia can put you in a position to spread the right kind of information—and maybe even change how someone thinks and speaks about the condition.
• Practice talking about schizophrenia. Responding to negative comments, stereotyping, and discriminatory attitudes can be challenging—and you’ll need to decide how and when to address these topics. But you may want to start by practicing talking about schizophrenia with friends and loved ones who are open minded and receptive.
• Connect with other caregivers. There are support groups that meet online and in person where you can connect with others who are also caring for people with mental health disorders.
• Take care of yourself. Make time for hobbies, relationships, exercise, eating well, and getting enough sleep. Caregiver burnout is real.
• Consider talking to a mental health professional. People who care for someone with a severe mental illness are often under a lot of stress. They are also at an increased risk for depression and anxiety. Counseling and therapy can help you prioritize your mental and emotional health.
• Focus on the positive aspects of caregiving. We talk a lot about the stress of caregiving. But caregiving can also be a rewarding experience. It can increase your confidence and help you learn new skills. It may offer a sense of fulfillment and strengthen your relationship with your loved one.

It’s also important to talk to your loved one with schizophrenia about stigma—where they experience it, how it makes them feel, ways they can prepare to deal with it. Because schizophrenia interferes with the way a person interprets reality, it’s important that they have a good understanding of what stigma is and why it occurs. This is also a topic they should be discussing with their healthcare providers.