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Evidence-Based Practices: Shaping Mental Health Services Toward Recovery

Illness Management and Recovery Workbook

Handout 2a:
Practical Facts about Schizophrenia

“Before I knew about my illness, I was confused and scared by what was happening to me. Nothing made sense. When I heard voices, I used to blame other people or even myself. Now I understand that hearing voices is part of my illness and that there are things that I can do about it.”

James, musician, choir director, parent, in recovery from schizophrenia

Introduction

This handout provides information about the psychiatric disorder of schizophrenia. Facts are given about how a diagnosis is made, the symptoms, how common it is, and the possible courses of the disorder. Several examples are included of famous people who have experienced the symptoms of schizophrenia and have made positive contributions to society.

What is schizophrenia?

Schizophrenia is a major mental disorder that affects many people. About one in every one hundred people (1%) develops the disorder at some time in his or her life. It occurs in every country, every culture, every racial group and at every income level.

Schizophrenia causes symptoms that can interfere with many aspects of people’s lives, especially their work and social life. Some symptoms make it difficult to know what’s real and what’s not real. These symptoms have been described as being similar to “dreaming when you are wide awake.” Other symptoms can cause problems with motivation, concentration, and experiencing enjoyment.

It is important to know that there are many reasons to be optimistic about the future:

• There is effective treatment for schizophrenia.
• People with schizophrenia can learn to manage their illness.
• People with schizophrenia can lead productive lives.

The more you understand about the illness and take an active role in your treatment, the better you will feel and the more you can accomplish toward your life goals.

Question: What did you know about schizophrenia before you had personal experience with it?

How is schizophrenia diagnosed?

Schizophrenia is diagnosed based on a clinical interview conducted by a specially trained professional, usually a doctor, but sometimes a nurse, psychologist, social worker or other mental health practitioner. In the interview, there are questions about symptoms you have experienced and how you are functioning in different areas of your life, such as relationships and work.

There is currently no blood test, X-ray, or brain scan that can be used to diagnose schizophrenia. To make an accurate diagnosis, however, the doctor may also request a physical exam and certain lab tests or blood tests in order to rule out other causes of symptoms, such as a brain tumor or an injury to the brain.

Question: How long did it take for a mental health professional to accurately diagnose the symptoms you experienced?

What are the symptoms of schizophrenia?

It is important to keep in mind that the symptoms of schizophrenia can be found in other mental disorders. Specifying a diagnosis of schizophrenia is based on a combination of different symptoms, how long they have been present, and their severity. Symptoms that occur only when a person has used alcohol or drugs are not included.

No one has the exact same symptoms or is bothered to the same degree. You may, however, recognize having experienced some of the following symptoms

“Hallucinations” are false perceptions

This means that people hear, see, feel or smell something that is not actually there. Hearing voices is the most common type of hallucination.

Some voices might be pleasant, but many times they are unpleasant, saying insulting things or calling people names. When people hear voices, it seems like the sound is coming in through their ears and the voices sound like other human voices. It sounds extremely real.

Some examples:

• “A voice kept criticizing me and telling me that I was a bad person.”
• “Sometimes I heard two voices talking about me and commenting on what I was doing.”

Many people also experience visual hallucinations, which involves seeing things which are not there.

Some examples:

• “Once I saw a lion standing in the doorway to my bedroom. It looked so real.”
• “I thought I saw fire coming in the window. No one else saw it.”

“Delusions” are false beliefs

This means that people have strong beliefs that are firmly held and unshakeable, even when there is evidence that contradicts them. These beliefs are very individual, and not shared by others in their culture or religion. Delusions seem very real to the person experiencing them, but they seem impossible and untrue to others.

One common delusion is when people believe that others want to hurt them, when they don’t (paranoid delusion). Another common delusion is people believing that they have special powers, talents or wealth. Other delusions include people believing that another person or force can control their thoughts or actions, or believing that others are referring to them or talking about them.

Some examples:

• “I believed that someone was trying to poison me.”
• “I was convinced that the TV was talking about me.”
• “I believed that I was fantastically wealthy, in spite of the balance in my bank account.”
• “I thought that people were reading my thoughts.”
• “No matter what the doctor said, I was convinced that I had parasites.”

A “thought disorder” is confused thinking

This symptom makes it difficult to stay on the topic, use the correct words, form complete sentences, or talk in an organized way that other people can understand.

Some examples:

• “People told me I jumped from topic to topic. They said I wasn’t making sense.”
• “I used to make up words when describing things to my brother, but he said he didn’t understand what I was saying.”
• “I’d be talking and suddenly I would stop in the middle of a thought and couldn’t continue. It was like something was blocking my thought.”

“Cognitive difficulties” are problems with concentration, memory and abstract reasoning

This means that people might have problems with paying attention, remembering things, and understanding concepts.

Some examples:

• “I had trouble concentrating on reading or watching TV.”
• “I couldn’t remember plans or appointments.”
• “I had problems understanding abstract ideas.”

A “decline in social or occupational functioning” means spending much less time socializing with other people or being unable to work or go to school

This symptom is especially important, because it must be present for at least 6 months in order to diagnose schizophrenia. It is also important because it has a big impact on people being able to carry out their roles in a wide variety of areas, such as taking care of themselves or their children or their household responsibilities.

Some examples:

• “It became very uncomfortable to spend time with people. I went from loving to go out with friends to dreading it and avoiding it whenever I could.”
• “I couldn’t do the cooking and cleaning any more. Everyday household tasks became absolutely overwhelming to me.”
• “My job was very important to me, but it became increasingly impossible to do it. I tried very hard, but I had trouble with even the most basic tasks. It was very hard to explain to anyone.”

“Disorganized or catatonic behavior” refers to two different extremes of behaviour

Both are relatively rare. “Disorganized behavior” is behavior that appears random or purposeless to others. “Catatonic behavior” refers to when a person stops almost all movement and is immobile (or almost completely immobile) for long periods of time.

An example of disorganized behavior:

“I used to spend whole days moving all the pots and pans from the kitchen to the basement to the bathroom then back to the kitchen. Then I’d start all over again.”

An example of catatonic behavior:

“I don’t remember this, but my brother told me that before I started getting help, I used to sit in the same chair for hours and hours. I wouldn’t move a muscle, not even to take a drink of water.”

“Negative symptoms” are the lack of energy, motivation, pleasure and expressiveness.

Negative symptoms lead to people having problems with initiating and following through with plans, being interested in and enjoying things they used to like, and expressing their emotions to others with their facial expression and voice tone. While these symptoms may be accompanied by feelings of sadness, often they are not.

While others may call these symptoms a sign of laziness, it is NOT laziness.

Some examples:

• “I stopped caring about how I looked. I even stopped taking a shower.”
• “It was so hard to start a conversation with people, even when I liked them.”
• “I didn’t have the energy to go to work or go out with friends or follow through with plans.”
• “Things that used to be fun, like bowling, didn’t seem fun anymore.”
• “People told me they couldn’t tell what I was feeling. They said they couldn’t read my expression. Even when I was interested in what they were saying, they thought I was bored or uninteresteD

The major symptoms of schizophrenia are:

• hallucinations
• delusions
• thought disorders
• cognitive difficulties
• decline in social or occupational functioning
• disorganized or catatonic behavior
• negative symptoms (lack of energy, motivation, pleasure or emotional expression)

Question: Which of the symptoms have you experienced? You can use the following checklist to record your answer.

Experiences of symptoms of schizophrenia

What causes schizophrenia?

Schizophrenia is nobody’s fault. This means that you did not cause the disorder, and neither did your family members or anyone else. Scientists believe that the symptoms of schizophrenia are caused by a chemical imbalance in the brain. Chemicals called “neurotransmitters” send messages in the brain. When they are out of balance, they can cause the brain to send messages that contain wrong information.

Scientists do not know what causes this chemical imbalance, but they believe that whatever causes it happens before birth. This means that some people have a “biological vulnerability” to develop schizophrenia, which then develops at a later age.

In addition to biological vulnerability, stress is also believed to play a role in the onset of schizophrenia and the course of the disorder. The theory of how vulnerability and stress interact with each other is called the “stress-vulnerability model” and is covered in more detail in the handout “The Stress-Vulnerability Model and Treatment Strategies.”

Many questions about schizophrenia remain unanswered. There are many research projects underway to try to learn more about the disorder.

Question: What other explanations have you heard about what causes schizophrenia?

What is the course of schizophrenia? What happens after you first develop symptoms?

Most people develop schizophrenia as teenagers or young adults, approximately age 16 to age 30. People vary in how often they have symptoms, the severity of their symptoms and how much the disorder interferes with their lives.

Schizophrenia affects people in very different ways. Some people have a milder form of the disorder and only have symptoms a few times in their lives. Other people have a stronger form and have several episodes, some of which require hospitalization. Some people experience symptoms almost constantly, but do not have severe episodes that require hospitalization.

Schizophrenia tends to be episodic, with symptoms varying in intensity over time. When symptoms reappear or get worse, this is usually referred to as a “symptom exacerbation” or an “acute episode” or a “relapse.” (More information on this subject is provided in the handout “Reducing Relapses.”) Some relapses can be managed at home, but other relapses may require hospitalization to protect the person or others.

With effective treatment most people with schizophrenia can reduce their symptoms and live productive, meaningful lives.

Question: What has been your experience with symptom relapses?

Examples of people who have schizophrenia

Some famous people have developed schizophrenia:

John Nash (1928 to present) is an American mathematician who made discoveries in math that had very important applications in the field of Economics. He won the Nobel Prize for Economics in 1994. His story is told in A Beautiful Mind, a book that has also been made into a movie.

William Chester Minor (1834 to 1920) was an American Army surgeon who also had vast knowledge of the English language and literature. He made major contributions to the Oxford English Dictionary, the most comprehensive dictionary in the world.

Vaslav Nijinski (1890 to 1950) was a Russian dancer who is legendary because of his physical strength, light movements and expressive body language. He is especially remembered for a dance piece called “Afternoon of a Faun.”

Other people who have developed schizophrenia are not famous, but are quietly leading productive, creative, meaningful lives:

Mr. X: works in an art supply store. He has a close relationship with his two brothers and goes bowling with them regularly. He likes to draw and plans to take an evening art class in the coming year.

Ms. Y: is married and has two children in elementary school. She participates in the home and school association and enjoys gardening.

Mr. Z: lives in a group home and volunteers at the zoo. He used to need frequent hospitalizations, but has successfully stayed out of the hospital for 2 years. He is looking for paid employment.

Questions:

Do you know other people with schizophrenia?

If so, what are some examples of their personal strengths?

What is stigma?

When referring to mental illness, the word “stigma” means the negative opinions and attitudes that some people have about mental illness. Not everyone with mental illness has experienced stigma, although unfortunately, many have.

It is important to know that there are two major laws that protect against discrimination against people with physical or psychiatric disabilities. The Americans with Disabilities Act (ADA) makes it illegal to discriminate in the areas of employment, transportation, communication or recreation. The Fair Housing Act (FHA) prohibits housing discrimination.
Stigma is a complicated problem, and there are no easy solutions. Research has shown that as the general public gets to know more about mental disorders and as they get to know people who have experienced psychiatric symptoms, their negative beliefs go down.

Many organizations, including the National Institute of Mental Health, the Center for Mental Health Services, The National Alliance on Mental Illness, the National Mental Health Association, and the National Empowerment Center, are working on national campaigns to educate the public and create more laws that protect against discrimination. Contact information for these organizations is listed in the Appendix of the “Recovery Strategies” handout.

If you have experienced stigma and/or would like to know more about strategies for responding to stigma, refer to the Appendix to this handout.

Question: Have you ever experienced stigma because of psychiatric symptoms?

What are some of the steps you can take to manage your symptoms?

By reading this handout, you are already taking an important step, which is to learn some practical facts about your disorder.

• Other important steps include:
• Learning how to cope with stress
• Building social support
• Developing a relapse prevention plan
• Using medication effectively
• Learning how to cope with symptoms
• Getting your needs met in the mental health system

These steps will be covered in the other educational handouts in the Illness Management and Recovery Program.

Summary of the main points about schizophrenia

• Schizophrenia is a major psychiatric disorder that affects many aspects of a person’s life.
• 1 in every 100 people develops schizophrenia at some point in his or her life.
• People can learn to manage the symptoms of schizophrenia and lead productive lives.
• Schizophrenia is diagnosed by a clinical interview with a mental health professional.
• The major symptoms of schizophrenia are:
  • Hallucinations
  • Delusions
  • Thought disorders
  • Cognitive difficulties
  • Decline in social or occupational functioning
  • Disorganized or catatonic behavior
  • Negative symptoms (lack of energy, motivation, pleasure or emotional expression)
• No one has exactly the same symptoms or experiences them to the same degree.
• Schizophrenia is nobody’s fault.
• Scientists believe that schizophrenia is caused by a chemical imbalance in the brain.
• Schizophrenia tends to be episodic, with symptoms coming and going at varying levels of intensity.
• There are countless positive examples of people with schizophrenia who have contributed to society.
• Stigma refers to negative opinions and attitudes about mental illness.
• What you do makes a difference in your recovery.
• There are steps you can take to manage psychiatric symptoms effectively.

Appendix: Strategies and Resources for Responding to Stigma

What are some strategies for responding to stigma?

It may be helpful for you to develop some personal strategies for responding to stigma. There are advantages and disadvantages to each strategy. What you decide to do depends on the specific situation.

Some possible strategies include:

Educate yourself about mental disorders

Sometimes people who experience psychiatric symptoms do not know the facts themselves. They may blame themselves for their symptoms or think they cannot take care of themselves or that they can’t be part of the community. You may have had these negative thoughts or feelings. This is called “self-stigma.”

It is important to fight self-stigma, because it can make you feel discouraged and cause you to lose hope in your recovery. One way to fight self-stigma is to educate yourself about psychiatric symptoms and mental disorders, and to be able to separate myths from facts. For example, knowing that no one causes schizophrenia can help you to stop blaming yourself or others.

Another way to fight self-stigma is to belong to a support group or another group where you get to know different people who have experienced psychiatric symptoms. You can locate support groups through organizations such as the Consumer Organization and Networking Technical Assistance Center (CONTAC) and the National Empowerment Center. Contact information is provided for these and other helpful organizations in the Appendix to the “Recovery Strategies” handout.

Correct misinformation in others without disclosing anything about your own experience

A co-worker might say, “People with mental illness are all dangerous.” You might decide to reply, “Actually, I read a long article in the paper that said that the majority of people with mental illness are not violent. The media just sensationalizes certain cases.”

Selectively disclose your experience with psychiatric symptoms

Disclosing information about your own experience with psychiatric symptoms is a personal decision. It’s important to think about how the other person might respond. It’s also important to weigh the risks and benefits to yourself, both in the short term and in the long term. Talking this over with someone in your support system might be helpful.

People vary widely in whether they choose to disclose information about themselves, and if so, how much. You may decide to disclose personal information only to family members or close friends. Or you may disclose information to people only when it becomes necessary. For example, you might need a specific accommodation in order to perform your job.

You may feel comfortable disclosing information in a wide variety of settings. You may even be willing to speak publicly about mental illness for educational or advocacy purposes.

Become aware of your legal rights

It’s important to educate yourself about the laws against discrimination. Two major laws that protect against unfair treatment are the Americans with Disabilities Act (ADA) and the Fair Housing Act (FHA).

The Americans with Disabilities Act makes it illegal to discriminate against people with physical or psychiatric disabilities in employment, transportation, communication, or recreation. The Fair Housing Act prohibits housing discrimination because of race, color, national origin, religion, sex, family status, or disability (physical or psychiatric).

It is worthwhile to take some time to understand the basic principles of these laws and how they might apply to you. If you feel that your legal rights have been violated, there is a range of possible actions you might take, depending on the situation.

Sometimes it is most effective to speak directly to the person involved. For example, it is usually preferable to approach your employer about the need to provide a reasonable accommodation on the job. An example of a reasonable accommodation would be asking to move your desk to a more quiet area in the office to improve your concentration.

Sometimes it may be more effective to talk to an expert to get advice, support, advocacy, mediation, and even legal help. For example, if a landlord refused to rent you an apartment because of psychiatric symptoms you may need to contact the Office of Fair Housing and Equal Opportunity

(FHEO) in the Department of Housing and Urban Development (HUD) for advice and assistance. If an employer was unresponsive to your request for accommodation on the job, you might want to contact the Equal Employment Opportunity Commission (EEOC).

Contact information for the Office of Fair Housing and Equal Opportunity, the Equal Employment Opportunity Commission and other helpful organizations is provided at the end of this Appendix.

Question:

What strategies have you used to combat stigma?

You can use the following checklist to answer this question.

Strategies for Combating Stigma

Resources

Anti-Stigma organizations and websites

Chicago Consortium for Stigma Research
7230 arbor Drive
Tinley Park, IL 60477
Phone: 708-614-2490

Otto Wahl’s Homepage and Guide for Stigmabusters
Dept. of Psychology
George Mason University
Fairfax, VA 22030
website: iso.gmu.edu/-owahl.INDEX.HTM

National Stigma Clearinghouse
245 Eighth Avenue
Suite 213
New York, NY 10011
Phone: 212-255-4411
website: community2.webtv.net/stigmanet/HOMEPAGE

Resource Center to Address Discrimination and Stigma
1-800-540-0320
website: www.adscenter.org

Federal agencies

Equal Employment Opportunity Commission (EEOC)
1801 L Street, NW
Washington, D.C. 20507
Phone: 202-663-4900
To locate the nearest office: 1-800-669-4000
website: eeoc.gov

Office of Fair Housing and Equal Opportunity (FHEO)
Department of Housing and Urban Development
451 7th Street SW
Washington, D.C. 20410
Phone: 202-708-1112
website: hud.gov

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