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A Special Message for Families and Friends of
Someone Diagnosed as Having Schizophrenia
by Al Siebert, PhD
The fact that you are reading this web article means that someone you care about has been diagnosed as having schizophrenia, and your search for information is probably motivated by a feeling that the psychiatric treatments and medications are not getting the results you want and hope for. You may also feel upset about psychiatrists trying to frighten you into making your loved one continue to take medications they don't want and don't like. You have the feeling that somehow there must be a better way and that recovery without medications is possible.
Perhaps your experience is like this e-mail sent to me recently:
"Dear Dr. Siebert,Here is what I wrote back to her:
My brother (aged 27 years) has suffered from schizophrenia since 1997. He got this dreadful disease when he was pursuing his master's degree. He is under medical treatment for this disease, but we are not finding a cure. He received his degree, but cannot find placement because of the effects of the medication. Please help me in the treatment of my brother. I can see some ray of hope after visiting your website. I will be highly obliged if you can bring my brother's life back to normalcy. He was a very intelligent guy beforehand and was free from all mental diseases earlier. Lord knows what happened to him all of a sudden. We all want to see him as he was before and are waiting for some miracle to happen. Sometimes even we feel that it's not a disease but something which is beyond our comprehension. But we are scared to stop his medication as we fear that it will further deteriorate his condition. Waiting very anxiously for your prompt reply..."
"Your brother is fortunate to have such a caring sister. I cannot give medical advice or tell you what will help your brother by e-mail. I can say that it does not help your brother for you to be overly upset about what is happening or if you think some expert can give you a magic formula to cure your brother.
"My Successful Schizophrenia website has information showing that most psychiatrists misrepresent what is known about schizophrenia, and why their efforts are ineffective. So-called 'schizophrenia' is not as 'dreadful' as you think. Long-term research studies show that over one third of the people diagnosed as having a schizophrenic condition fully recover without medications and another third achieve very good social recovery. Poor outcomes are primarily attributed to the effects of hospitalization and medications. That your brother was over 21 when he had his first episode is a positive, hopeful sign.
"It is up to him to find a way to develop good relationships with other people. You may find that teasing him about what he does may reestablish the connection you had when you were children. It is better to see your brother on a heroic inner journey being made difficult by people who mistakenly think he has a dreadful disease.
"With best wishes to you all...."
As I said to the woman who wrote the letter, my website has no information on how to treat or cure anyone diagnosed as having so-called schizophrenia. It has no information about effective medications to take. Why so? Because you probably have mistaken ideas about "schizophrenia" and how people recover from it.
Guidelines For You
Useful Facts
This website was created to provide helpful facts and information you probably haven't been told. This article provides guidelines on how to be helpful to the person and how to avoid adding to their difficulties. The focus is on you, not on the person with the diagnosis. The more you learn what to do, say, and think that is useful, the better the person's chance of regaining a good life for themselves.
I'll explain later why I said to the man's sister, "It is better to see your brother on a heroic inner journey being made difficult by people who mistakenly think he has a dreadful disease." First, here are some facts you'll find throughtout our site:
- After 100 years of research since "schizophrenia" was first observed, the leading psychiatric researchers confess to each other that they still don't know what "schizophrenia" is, who will get it, how to cure it, or why some people recover from it.
- Most cases of so-called "schizophrenia" occur in physically healthy young adults (ages 16 to 25) who usually have a life history of being bright and capable. That is why it was originally called "dementia praecox-the loss of mental capacities in youths." The older they are when first diagnosed, the better the chances of recovery because they have memories of how well life can be for them.
- Psychiatrists who say that so-called schizophrenia is a brain disease like Parkinson's, Alzheimer's, and multiple sclerosis, are distorting medical facts. They are making the so-called "schizophrenic" condition seem much worse than it is. What these psychiatrists do not tell the public is that while neurologists can determine with laboratory testing who has Parkinson's, Alzheimer's, and multiple sclerosis, no neurologist can determine with laboratory tests who has schizophrenia and who does not. No one dies from schizophrenia, even when untreated, and people diagnosed with "schizophrenia" can recover on their own without treatment-something no person with Parkinson's, Alzheimer's, or multiple sclerosis has ever done.
- "Schizophrenia" is not a condition of slow, progressive deterioration. In general, the condition does not progress more after five years from its outbreak, but rather, improves. A small percentage of people fully recover and go on to become even better than before the episode. Many long-term research studies show that over one-third of the people who have an episode fully recover without medications (as did John Forbes Nash, Jr., subject of the motion picture and book, A Beautiful Mind) and another third achieve very good social recovery. Poor outcomes are usually attributed to the effects of hospitalization and medications.
- Some people are helped by medications. If medications are helping, then continue with what is working. Many people, however, experience the neuroleptic and psychotropic medications given to them as more harmful than helpful. They put on weight, become heavy smokers, feel lethargic, and have difficulty doing detailed work. Listen to them. Become their advocate with the psychiatrists. Insist that the psychiatrists provide you with written evidence that the medications being prescribed are safe and will be effective. Emphasize that you "want proof that the medications are safe, will be effective, and will not cause harm."
- Many psychiatrists try to frighten families into keeping the person on medications by saying 10% of people with schizophrenia commit suicide. If you are told that, ask to see evidence proving that the statistic is accurate. The truth is, national statistics on suicide disprove that statement. There is no documented evidence supporting the assertion that 10% of people with schizophrenia commit suicide. If that was true, there would be over 250,000 suicides recorded in the United States every year instead of the 30,000 reported for all causes. If any mental health professional says that a person with schizophrenia is a suicide risk, ask to see published evidence that their statement is accurate.
- Many psychiatrists try to frighten families into keeping the person on medications by saying a person with schizophrenia might harm children or become violent. If you are told that, ask to see evidence proving the assertion is accurate. The truth is that people said to have schizophrenia are not more violent or physically harmful than is found in the general population. If any mental health professional says that a person with schizophrenia is likely to cause harm to others, ask to see published evidence that their statement is accurate.
Don't think of anyone as being "a schizophrenic."
Be cautious if any mental health professional says your loved one is "a schizophrenic," and do not allow yourself to use that phrase or even think it. It is a form of labeling that is demeaning, abusive, and stigmatizing to the person. One mother sent an e-mail to me that she signed "mother of a schizophrenic." Here is what I wrote back to her:
"Calling your son 'a schizophrenic' is similar to swearing. How would you feel if people claiming to be your friends went around telling others that you are 'a loser' or 'a pervert'? When a person is given a stigmatizing label, it is very hard for them to ever change people from having that perception about them. Don't lock your son into that stigmatizing perception by going around saying to people that you are the mother of a schizophrenic."
A mental health professional who calls someone "a schizophrenic" is not professionally competent. Here's why...
- In 1980, the American Psychiatric Association officially declared in the preface to their Diagnostic and Statistical Manual of Mental Disorders, Edition III, that no one is to be called "a schizophrenic," that persons so diagnosed should be referred to as "a person with schizophrenia." Any mental health professional who talks about "schizophrenics" is badly out-of-date with current professional practices. Try to get away from them. Find someone else.
- Schizophrenia is not "a disease" (singular.) Starting with the original descriptions nearly 100 years ago, all professional references describe "the schizophrenias" (plural) as a group of conditions. A major problem in the study of schizophrenia is that the symptoms vary widely between people. Ten people diagnosed as having schizophrenia may all have different symptoms. There is no universal symptom found in all people diagnosed with schizophrenia. Any mental health professional who talks about "schizophrenia" as being a disease (singular) is badly out-of-date with current professional practices. Try to get away from them. Find someone else.
- Very few psychiatrists are able distinguish between someone having a mental breakdown and someone having a transformational, spiritual breakthrough. The perception of mental illness in someone is mostly a stress reaction in the mind of the beholder. In our society at this time in history the thoughts, feelings, and actions of some people may be declared "schizophrenic" by people who can't handle what they are being exposed to. This is why some people with so-called schizophrenia can completely recover with a therapist who relates to the person, not the "symptoms." The psychiatric profession has not listened well to successful therapists such as Carl Jung and Harry Stack Sullivan who said that their successes came from never seeing "schizophrenia" in anyone.
- Psychiatrist John Weir Perry achieved 85 percent recovery with persons declared to be extremely psychotic in his Diabases House program without any use of medications. Psychiatrist Loren Mosher achieved higher rates of recovery than traditional hospital programs using a supportive social environment instead of medications. Both of their programs had to shut down because of loss of funding, but new programs of a similar nature may exist in your area if you look.
There is Nothing to Cure
A useful perspective is to shift your thinking from believing the person "has a dreadful disease" to seeing that there is nothing in the person to be removed or cured. The reason why the person is said to have "a disease" is because at this time in history people who say and feel things that upset others are turned over to "doctors." Anyone seen by "a doctor" automatically becomes "a patient" with "a disease" or "illness." These medical definitions work for psychiatrists, but may be inappropriate for a person who just wants to figure out what is happening in his or her mind. It is counter-productive in many instances, to insist to the person that they must believe they are mentally ill. See, for example, what happened when I interviewed a young woman said to be "a paranoid schizophrenic" by psychiatrists, and did not think of her as sick:
http://www.successfulschizophrenia.org/articles/ndlisten.html
The person you care about is going through a period of inner turmoil made worse by the ways that others react. People said to have schizophrenia are usually ultra-sensitive to what others think and feel. It may be useful for them to think of them as going through a transforming heroic journey that they will be able to survive and that they can emerge from with more wisdom, strength, and ability. It's a difficult inner journey where they have to make sense of the confusing things said and done to them. A woman who was diagnosed as having schizophrenia many years ago recently wrote to me about her recovery and enlightenment. She says "I do believe that 'weller than well' is a pretty good description of the kind of psychological balance that can be achieved once the illusionary period becomes history, and it's time to put the puzzle into place, to find the 10% of truth among the 90% of bullshit."
A key question for you to think about is this: "Can I handle honest feedabck about ways that my actions are inconsistent with my words? Can I handle a direct confrontation that I'm not being totally emotionally honest with the person?" A wierd reality for many people said to be mentally ill is that they are declared crazy by people who cannot handle being confronted with inconsistencies between their actions and words.
Skilled therapists say that a person with schizophrenic symptoms is very lonely and yet feels terrified about closeness--almost like an abused child. Successful therapists are patient, they provide a relaxed, compassionate presence as one would with a cautious, sensitive child. Skillful therapists remain both concerned and detached, both caring and indifferent, because it is the person's responsibility to find a way to gain control over their thoughts and feelings.
The person you care about has to find ways to relate to other people. They need you to be a friend, not an enforcer of psychiatry's ineffective treatments. Keep in mind it is your journey also, so keep learning. The thought that someone is insane, crazy, or "sick" is your mind's way of handling your feelings of distress. Ask the person what they need. Express your feelings honestly. Ask what they want you and others to understand. Ask them for help. Continue learning together with the person said have a mysterious madness.
Resources:
Trials of the Visionary Mind, by John Weir Perry. SUNY Press, 1998.
"Treating Madness Without Hospitals" by Loren Mosher, in The Handbook of Humanistic Psychology, edited by Kirk Schneider, et al., 2002
To become more fully informed about the negative effects of psychiatric medications, read:
- Your Drug May Be Your Problem: How and Why to Stop Taking Psychiatric Medications, by Peter Breggin, M.D. and David Cohen, Ph.D., and
- Mad in America, by Robert Whitaker.
These and many other useful books can be found at the on-line bookstore at http://www.successfulschizophrenia.org/resource.html
With best wishes,
Al Siebert, Ph.D.
topemail: Al Siebert, PhD
P.O. Box 505
Portland, OR 97207