Frequently Asked Questions & Resources

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  • Q)What is Schizophrenia?
  • A)Schizophrenia is considered to be a severe, lifelong brain disorder. It includes psychosis, which means delusional thinking (such as believing the CIA and the FBI are after you or that you can read people's minds, or that people on TV are talking directly to you), auditory hallucinations (hearing voices), and visual hallucinations (seeing things that are not there). In women, it usually hits during the mid 20's or early 30's. In men, it usually hits in their teen years or early 20's. There is no known cure for this disorder. There are treatments available.

  • Q)What is Schizoaffective Disorder?
  • A)This brain disorder occurs when a person has symptoms of Schizophrenia as well as symptoms of Bipolar Disorder. This is a disorder that is difficult to diagnose, as discussed here by the National Alliance on Mental Illness (NAMI). Some experts, like Dr. E. Fuller Torrey, in Surviving Schizophrenia, call Schizoaffective Disorder a form of Schizophrenia. On this blog, I have used both terms interchangebly, because I have been diagnosed with both, at different times. A person may have Schizoaffective Disorder, and go for a long time with only symptoms of Schizophrenia without a mood disorder, or go for a long time with symptoms of a mood disorder without psychosis. WebMD lists symptoms - here, as you can see below, they are divided by the categories of Depression, Mania, and Schizophrenia:

-Poor appetite
-Weight loss or gain
-Changes in sleeping patterns (sleeping very little or a lot)
-Agitation (excessive restlessness)
-Lack of energy
-Loss of interest in usual activities
-Feelings of worthlessness or hopelessness
-Guilt or self-blame
-Inability to think or concentrate
-Thoughts of death or suicide

-Increased activity, including work, social, and sexual activity
-Increased and/or rapid talking
-Rapid or racing thoughts
-Little need for sleep
-Inflated self-esteem
-Self-destructive or dangerous behavior (such as going on spending sprees, driving recklessly, or having unsafe sex)

-Delusions (strange beliefs that are not based in reality and that the person refuses to give up, even when presented with factual information)
-Hallucinations (the perception of sensations that aren't real, such as hearing voices)
-Disorganized thinking
-Odd or unusual behavior
-Slow movements or total immobility
-Lack of emotion in facial expression and speech
-Poor motivation
-Problems with speech and communication

Q)How can I tell if my friend or family member has Schizophrenia, or Schizoaffective Disorder?

  • A)Schizophrenia.Com has a page on diagnosis of Schizophrenia including the DSM-IV (Diagnostic and Statistical Manual) criteria used by doctors around the world. The Mayo Clinic has a page on how a diagnosis of Schizoaffective Disorder can be made, and MedicineNet describes diagnosis here.

  • Some common signs of Schizophrenia are:
    -talking to one's self (when someone is talking to the voices in their head they may talk out loud to themselves)
    -laughing at strange times (because of the voices they are hearing)
    -talking about being followed by the C.I.A., the F.B.I., the police, the N.S.A., the Secret Service or other law enforcement agency when there is no reason to believe this person would really be followed by such an agency
    -believing you can read others' minds, or that they can read your mind, or believing you are under mind control
    -thinking people on the radio or on TV or in movies are talking directly to you or about you and specifics of your life
    -believing bizarre things that make no sense to others, which may or may not ever be expressed to other people
    -seeing things that aren't there (visual hallucinations)
    -hearing things that aren't there (auditory hallucinations)
    -smelling things that aren't there (olfactory hallucinations)
    -feeling things that aren't there (tactile hallucinations)

    People with schizophrenia usually experience a combination of positive (i.e. hallucinations, delusions, racing thoughts), negative (i.e. apathy, lack of emotion, poor or nonexistent social functioning), and cognitive (disorganized thoughts, difficulty concentrating and/or following instructions, difficulty completing tasks, memory problems).

    As a friend or family member, you obviously cannot make the diagnosis unless you are a doctor, so it is recommended that you try to get your sick friend/family member to see a physician for help. If she/he is not comfortable talking to a psychiatrist, she/he might be more comfortable talking with a therapist who could assess the problems she/he is having. If the therapist suspects psychosis is present, the therapist will generally refer the client to a psychiatrist to be evaluated further and to get treatment with medications.

    • Q)What do I do to help my friend or family member if I think they have Schizoaffective Disorder or Schizophrenia?
    • A) First of all, let them know that you care. If the person knows someone cares about her well-being this is always beneficial. If the person does not know that she/he is ill, you may not be able to convince her/him that they are ill. When people are psychotic, they often do not have "insight" into the problem, meaning that they are too sick to know they're sick. In this case, you can generally not reason with the person well enough to convince them they are sick, so convincing them to see a psychiatrist is a difficult task many times.

    Still, if you cannot convince them to see a therapist or psychiatrist, you can listen to them talk to you if they feel distressed, provide them with housing if they are unable to keep a roof over their head, provide them with financial support if you can, and remind them consistently that you are available to take them to a psychiatrist or therapist if they are ever willing to go to one.

    You can also provide them with literature on Schizophrenia, such as:
    •  Surviving Schizophrenia: A Manual for Patients, Families, and Survivors (a very informative book by Dr. E. Fuller Torrey)
    •  Diagnosis: Schizophrenia (stories of young people diagnosed with the disease edited by Rachel Miller)
    • Divided Minds: Twin Sisters and Their Journey Through Schizophrenia (a biography by Pamela and Dr. Carolyn Spiro)
    •  The Center Cannot Hold (a biography by Elyn Saks who has Schizophrenia)
    •  The Day the Voices Stopped: A Schizophrenic's Journey from Madness to Hope (an autobiography by Ken Steele)
    • A Beautiful Mind (an unauthorized biography of Nobel Prize winner John Nash who lives with Schizophrenia, by Sylvia Nasar)
    • Crazy: A Father's Search through America's Mental Health Madness (an informative book on the mental health system in the U.S. by Pete Earley who is the father of someone with Schizophrenia)
    • The Quiet Room: A Journey Out of the Torment of Madness (an autobiography by Lori Schiller)
    And Books on Related Topics:
    • An Unquiet Mind (a biography by Dr. Kay Redfield Jamison who has Bipolar Disorder, and relevant to those with Schizoaffective Disorder)
    • Madness: A Bipolar Life (an autobiography written very well by Marya Hornbacher, relevant to anyone with Bipolar Disorder or Schizoaffective
    • Girl, Interrupted (an autobiography by Susanna Kaysen about being hospitalized in a psychiatric institution after a suicide attempt)
    • Bodily Harm: The  Breakthrough Healing Program for Self Injurers (a self-help book for people who self  mutilate by Karen Contario and Wendy Lader)
    • A Bright Red Scream (book on self injury by M. Strong)
    • Darkness Visible: A Memoir of Madness (autobiography by William Styron about depression)
    • The Noonday Demon: An Atlas of Depression (book covering depression by Andrew Solomon)
    • Prozac Nation (autobiography on Bipolar Disorder and depression, by Elizabeth Wurtzel)
    There are also educational documentaries about these illnesses that might be helpful, such as:
    And featured films such as:
    The Soloist
    A Beautiful Mind

    You may also want to refer your loved one to one of the many educational sites online about Schizophrenia and/or Schizoaffective Disorder.

    • Q) But what do I do if my friend/ family member cannot take care of herself, is a danger to himself, may hurt someone else, is psychotic or is basically incapable of functioning and really needs help, and won't go to get help?
    • A) This is a tough conundrum which many families find themselves in. If your friend/family member is a threat to herself or anybody else, you call the police. Just dial 911. It is always a good idea to ask if the police department has a Crisis Intervention Team and request one of the C.I.T. trained officers to come, because these officers are specially trained in mental illness and crisis situations. Alternatively, you can contact your local mental health crisis line, which you can reach by dialing 1-800-273-TALK or 1-800-SUICIDE.

    However, if they are not a threat to themselves when the police speak to them, they will generally not be eligible to be involuntarily hospitalized, in many states. The laws vary on this from state and certainly vary around the world. There are laws to protect people who have mental illnesses from unnecessary involuntary hospitalizations, and these laws were created out of necessity to avoid abuse and terrible mistreatment of those of us who have these illnesses. However, at times, they do more harm than good when a person is very sick and yet is not presenting in the proper fashion to prove how sick she/he is.

    Some public family members, such as Pete Earley author of Crazy: A Father's Search Through America's Mental Health Madness, have stated that they lied to the police in order to have their family member committed, because they thought it would save the family member's life. For example, they will say that their family member hit them or threatened them in order to meet the qualifications for the family member to be hospitalized. I am not recommending that approach, but simply stating that it is what some people do as a last resort. Personally, I would not want someone lying about me and saying that I did something I did not do, and I don't think that is a practice that is fair to those of us who have mental illnesses. At the same time, having lived through torment-filled years of psychosis, I know there are times when a person needs help and is unable to ask for it.

    A good organization to contact about the laws in your state, and about family support groups in your area is the National Alliance on Mental Illness (NAMI), if you live in the U.S.

    • Q) Why won't my family member's psychiatrist tell me anything that is going on?
    • A) There are privacy laws that prevent doctors from being able to release any information about their patients without a written consent form. If your family member or friend is willing to sign some type of release of information form, giving the doctor permission to speak to you about her/his care, then you would be able to speak to the doctor. If the person is above 18 years old, then you will otherwise not be legally able to speak to their doctor unless you took legal measures such as becoming their Power of Attorney.

    • Q) Where can my friend or family member go to get help such as a diagnosis or treatment or both?
    • A) In the United States, there are community mental health centers where people can go with mental health problems. If you do not know where one of these centers is, you can call the local department of social services, or a mental health organization in your area such as NAMI or Mental Health America or go to this website of the Substance Abuse and Mental Health Services Association (SAMHSA). Sometimes these centers have long waiting lists, so it could be months before you get an appointment, but this is not always the case. At these centers psychiatrists, and A.R.N.P.'s (nurse practitioners) can evaluate a person and give a diagnosis.
    Alternatively, if you have the funds or health insurance to see a psychiatrist, you can get evaluated for these diseases by any psychiatrist. If someone has the resources to go to a special center that deals with Schizophrenia, there are some of those clinics listed here. If  someone is psychotic and must be hospitalized, a psychiatrist at a hospital can do an evaluation and make a diagnosis there.

    • Q) I have a mental illness. Where can I go for help that is affordable on my low income?
    • A) Community Mental Health centers in the U.S. are generally the most affordable place to go if you have a limited income. Outside the U.S. you may wish to contact Befrienders International to ask for assistance.

    • Q) Where can I get help finding a place to live that I can afford on disability?
    • A)If you live in the U.S., you can contact the local department of social services, or the local housing department to ask about affordable housing such as Section 8, HUD housing, and other options. The National Housing Database for Homeless and Low Income can help you find housing too. This HUD website may help you. If you are homeless, the Homeless Shelter Directory may be of use to you.

    • Q) What can I do to help the homeless mentally ill people I see on the streets?
    • A) One idea I got from someone I know is to carry with you a card with locations and/or phone numbers of local homeless shelters, enough money for bus fare (usually about $1), and perhaps some small food items, in a small bag, and give these out to homeless people you come across. Volunteering for your local homeless shelter, soup kitchen or homelessness coalition is a great way to make a significant impact. If you meet someone who is homeless and you suspect they have a mental illness, you can always tell them about the local community mental health center.
    However, it is important to note that not all homeless people have mental illnesses. Additionally, not everyone with a mental illness is interested in your informing them about a mental health center. Some people who do have mental illnesses would find your suggestions intrusive, and others may be too sick to know that they are sick.

    When you come across a homeless person who appears to be psychotic, your heart will likely go out to them and you may want to do something to provide assistance. This is a normal reaction, but aside from talking to them and trying to give them information, there is a limit as to how much you can really do. Police, in some states, may be able to take the person to a hospital for an evaluation whether the person wants to go or not.

     If a person is willing to go to a hospital to be evaluated, and they are a danger to themselves or others, the hospital generally has to evaluate them and admit them if they are thought to be at risk for harming themselves or someone else.

    • Q) My friend or family member will not take her medication. How can I force her to take it?
    • A) If a person does not wish to take medication, in some states, if they are psychotic, there are legal measures that can be taken where a judge will put the person into a hospital or day treatment program where medication is administered. However, in most cases, you cannot legally force someone to take medication unless she is a danger to herself or others. Without proof of such danger, there is not much you can do to make a person take medication, because those of us with mental illnesses still have legal rights to make choices about what we will or will not do with our health. Sometimes people make decisions that lead to problems, but it is difficult to make a hard and fast rule about when someone should be forcibly medicated, since there are civil rights advocates on the one hand who will say that a person should never be forced to take medication, and advocates for forced mental health treatment on the other hand.

    Personally, I am not sure I would want to live in a society that would say I have to take medication, but for myself I have made the choice that I will take it because I know I am better when I am on it, whereas without it I would likely not keep myself alive very long and would definitely have difficulty functioning. Sometimes people need to learn this from experience, as I did, before they realize they need medication. Some people never realize it, and live a very difficult life because of that, however others choose not to take medication and are able to live a decent life without it. Not everyone improves with medications, though for the most part, research indicates the only effective treatment for psychosis is antipsychotic medication.

    • Q) Are there any antipsychotic meds that won't make me get fat? Why do all these medications cause weight gain?
    • A) Many antipsychotic medications tend to cause weight gain. Sometimes this is because of the Metabolic Syndrome which is more likely to happen when people take certain antipsychotics. Research has shown that antipsychotics can change a person's metabolism, leading to this syndrome. Metabolic Syndrome is a serious matter. It can lead to heart disease, stroke, and Type II Diabetes.
    Some of the antipsychotics, such as Seroquel, Risperdal, Zyprexa, and Clozapine, are commonly known to lead to weight gain, while others such as Abilify and Geodon are known to be less likely to lead to weight gain. Everybody is different, however, and just because I gained a ton of weight on the antipsychotic drugs that work for me, that does not mean you would gain the same amount of weight if you took those drugs, or even that you would gain any weight. If you ask a drug company representative, they will probably stress this fact and advise that you change your diet and exercise, so you will not gain weight.

    I think it is a significant problem that people with mental illnesses can find that a treatment works, only to end up physically sick as a result of that treatment leading them into obesity. I don't work for a drug company; I take the medications, so I have reason to care about this. I have spoken to a researcher in the past few months about this topic who assured me it is a major area of research by psychiatrists right now, and hopefully, in the future, there will be better options for medications. I wish that future was coming a lot faster than it is.

    Sometimes a doctor will prescribe a person who is obese a medication to help them lose weight, though there are possible side effects - and sometimes dangerous ones - with all of these medications too. I learned from experience that a diet drug which worked well helping me to lose weight brought to me a whole new problem with cardiac trouble, and I had to stop taking that medication.

    There are no easy answers right now to the weight gain problem with antipsychotics.

    • Q) Aren't most people with Schizophrenia murderers? You seem so different from the people on TV who are Schizo. On the crime shows, people with Schizophrenia are usually the murderer.
    • A) About 1-2% of the population has Schizophrenia, and this may not include everybody with Schizoaffective Disorder. Hardly any of these people become murderers. The vast majority of people with mental illnesses never commit a single violent crime. In fact, a person with a mental illness is statistically more likely to become a victim of a crime than to be a criminal. A person with a mental illness is generally not more likely to commit a violent crime than a person without a mental illness. Real life does not reflect the reality you see on most television shows. Being a psychopath or a sociopath is not the same thing as having Schizophrenia. Psychopaths and sociopaths are more likely to commit violent acts than people with Schizophrenia or Schizoaffective Disorder.

    • Q) Is Schizophrenia when you have multiple personalities?
    • A) Schizophrenia has nothing to do with multiple personalities. The condition formerly known as Multiple Personality Disorder is now called Dissociative Identity Disorder and is in no way connected to Schizophrenia or Schizoaffective Disorder. Dissociative Disorders are usually related to having a history of abuse in your childhood. Schizophrenia and Schizoaffective Disorder are biologically based brain disorders that are not caused by abuse.
    Further, when people with D.I.D. say they are hearing things, they mean that they are hearing voices inside their head, which is the voice of their own self. People who are actually psychotic hear voices coming from outside their heads, as in voices of other people, or voices on TV or the radio.

    • Q) How did you get better to the point that you can function, go to college, work part time, and live your life?
    • A) First, I spent five months hospitalized, which was when I was finally on medication long enough for it to have a chance to work, and for the medications that worked to be found. Medication that works is often found by trial and error, and it won't work if you don't take it long enough for it to work. Next, I spent ten months in a group home where I stayed on the medication, and it was during this period that I worked part-time again for the first time in years. After that, I moved into an apartment. After that, I went back to college part-time. During this period I also began attending therapy regularly with a skilled therapist who knew a lot about "perceptual problems" (i.e., psychosis). I say this all to point out that progress is made in steps; it doesn't happen all at once.
    Finally, I never got completely better, and probably never will unless they find a cure in my lifetime to Schizoaffective Disorder, and I'm lucky enough to get it. I still go to therapy, I still only work part-time, and I still only go to college part-time. But I did get an Associate's Degree and am working on a Bachelor's Degree. I have lived where I currently live longer than any other place I have lived as an adult, so things have definitely improved.

    Here are some 2016 Resources for College Students with Disabilities on another site.