The First Signs of Schizophrenia
(Personal Stories from the Support Group Discussions)

In my own case it was just over a decade ago when my brother began to sound different on the phone. He lived back East and my parents and I were living on the West coast and in phone calls it became apparent that my brother's voice no longer had the same tones of excitement and humor that he used to; and instead it was very flat. At the same time he began to tell us about a situation at work that just didn't seem possible; he was complaining that a group of fellow workers were conspiring to get him.

My brother was fresh out of college and was starting in a Sales job at a fast growing computer company and said that there was jealousy by the other salespeople there because many of them didn't have a college degree and that he was on the "fast track". Then he started telling us that he wasn't feeling very good and that he thought that one of these scheming co-workers had stuck him with a needle with some unknown drug so as to take him out of competition for the top jobs in the company. He also said he felt strange, and didn't have much energy and couldn't concentrate.

Obviously this whole story seemed very unbelievable and we sensed something was wrong but had no clue as to what it could be. We recommended that my brother quit his job and look for something else - as we began to wonder if he had a "mental breakdown" and would get better once out of the stressful job situation. A month or two after he quit his job he suddenly began calling me from payphones because he thought that people were bugging his phone and that famous business people in the country were trying to get his new business ideas. This was so "far out" as to be entirely unbelieveable and we suddenly realized that something was very clearly and seriously wrong - what exactly that was took us another 5 years to find out definitively, which is the saddest part. We went through a number psychiatrists and psychologists who thought he was fine or only a little paranoid (he always seemed to pull together enough to present a reasonable front to the psychiatrists but we knew the old John, and something was still definitely wrong - but you keep hoping that they are right and that he just needed a few months to get back on his feet).

My recommendation to people who are either wondering if they have schizophrenia or wondering if a friend or loved one has schizophrenia - is to first contact talk with people in the discussion areas, or contact the Local NAMI (in the USA), or Schizophrenia Society (in Canada), and visit one of their meetings to talk with other parents or family members and get a recommended psychiatrist from them who is experienced with schizophrenia. I think one of our key problems was that we didn't do this in the early days of my brother's illness (though misdiagnosis sounds very common in schizophrenia cases) - and because of this we may have missed the opportunity to get treatment. This lack of treatment during the early years of the illness, research now suggests, could have been a key factor in his ultimately poor recovery and suicide.

After a few meetings with psychiatrists - and no improvement in my brother's condition - he became disillusioned with the medical profession and would no longer see doctors. It took us almost 6 years until he then degenerated to the state where he could he had become so delusional that he had to be hospitalized. If we had gotten him medication much earlier I think he would still be alive today.


From: Linda

My son, was diagnosed as a parnoid/disorganized schizophrenic in Sept of 1995. The first signs we saw were:

1. He wouldn't eat, everything tasted "funny" or he thought I was putting something in the food to make it taste "funny". He wouldn't even eat McDonalds food, which he always loved. Below are the the first signs that we saw over a 9 - 10 month period, before he received treatment.

2. He lost 50 lbs during this time (6 - 7 months). I took him to our family doctor who did a series of tests, including a drug test, all came back negative. (Started in Jan 95)

3. He then started to zone out for long periods of time (1 - 2 hours). He wouldn't blink very often or change his expression. I would ask him if anything was wrong and he'd just shake his head no. He then started to laugh during these times for no reason.(Started in May 95)

4. He would sit and stare at his hands for hours, when I would ask him what was wrong with his hands, he would say they are different then they use to be.

5. During this entire period, his grades in school went from C's - D's to all F's. The school
would call and say he would get up and walk out of class and just roam the halls.

6. Starting in June 95, he started getting very aggressive, talking to himself and laughing in his room. He would get very upset and run out of his room, down the stairs and outside. He started doing this everyday. It started really going down hill from there.

7. He would never say he was hearing voices, but it was very apparent he was. God told him what numbers to play for the lottery, if I bought a ticket I would win millions. He heard other voices, I would hear him talking to them.

8. He started talking in a language we did not understand, after research I found these to be called "word salads". He would call me by a name that no one understood, he said I was from a different planet sent here to kill him. He told his siblings they were from his planet and they were here to protect him from me. He would come out of his room, scream at all of us in the foreign language, and tell us we all were going to die. 6. Would no longer watch T.V., just listened to Pink Floyd "The Wall" over and over again.
In fact he broke his cd player by doing this.

9. Paced constantly or do just the opposite not get out of bed for hours during the day. (he would not sleep at night)

8. Started to hallucinate. The walls had bugs on them, we all looked different, my eye brows were pointed upward and my ears had grown. He said things were moving when they were not. During this time I was totally freaking out.

The above are a brief summary of what was happening, so many things occured during this period I can't remember or have blocked some of it out. I was able to admit him to the hospital by telling him we were just going to the doctor for a check up. The psychiatrist we saw here in St. Louis only treats Schizophrenics and I had faxed him a long letter explaining Rhett's behavior before our first visit. He had 3 security guards come to his office and escort Rhett to the ICU locked floor. When we arrived in the locked unit, Rhett did sign himself in "Thank God".

From: Carol

It took me a while to respond because I have been quite busy the last few days. This is from Support Family Training and is included in Journey of Hope Early (Prodromal - as they say in the psychiatry community) Symptoms of Schizophrenia Following is a list of some early symptoms of schizophrenia. It was developed by families, each with a mentally ill relative. Many of the behaviors are within the range of normal responses to situations. However, it was the conclusion of the group that there was a vague yet distinct awareness that the behaviors were "unusual." Prior to full manifestation of the illness, families observed:

  • Depression (noted by everyone)
  • Excessive sleeping or inability to sleep for long periods of time
  • Social withdrawal and isolation (noted by everyone)
  • Shift to unusual behavior; significant personality change
  • Deterioration of social relationships
  • Hyperactive or inactive (or alternating between the two)
  • Inability to concentrate or cope with minor problems
  • Extreme religiosity or preoccupation with the occult
  • Hostility from one formerly passive and compliant Indifference or inflexible obstinancy
  • Dropping out of activities and life in general
  • Decline in academic or athletic performance
  • Accidents or self-imposed injuries (cutting oneself)
  • Drug or alcohol involvement with extreme or dramatic reactions
  • Forgetfulness and losing things
  • Devastated by peer disapproval
  • Deterioration and abandonment of personal hygeine
  • Noticeable and rapid weight loss
  • Attempts to escape through geographical changes; frequent moving or hitch-hiking trips (*for teens, I would add running away)
  • Excessive writing or printing without apparent meaning
  • Excessive need for acceptance
  • Inability to express joy
  • Inappropriate laughter
  • Bizarre behavior (hopping, wearing only torn clothing, applying strange make-up)
  • Irrational statements
  • Strange posturing
  • Refusing to touch anyone or certain things (*note- our son did this with a twist, if someone touched his things, he would throw them away because they were contaminated* cw)
  • Shaving head or removing body hair
  • Not blinking or blinking excessively. Staring

Hope this helps. Please remember, these are not to be used to diagnose, but to clue you in to actively and vigorously seek a competent professional opinion. Trust your instincts. If you feel something is wrong, it probably is. Carol

From: Sean

I am a 27 year old suffering with schizophrenia and my illness did not become full blown until 1991 when i was 22 yrs old. However, some of the first signs,looking back, started when i was in high school. These included deficit or negative symptons which are discussed well in the free video on the "Negative symptons of schizophrenia" put out in 1995 by the University of Iowa .

Stress played a big part in my oncoming illness. I had just moved in with my foster father to go to a bigger high school in Kansas City, Mo in 1986. I wanted to move out of my mother's home in a small midwestern town named Brookfield,Mo where i had attended 3 yrs of high school and had a 3.8 gpa to go to a bigger school in hopes of getting into a better college. My hopes were high indeed (i wanted to attend/get into Stanford or Berkeley) but due to the living conditions at my foster father's apartment (he was living with a younger woman who was promiscuous) and my father himself suffered from bi- polar disorder and was in a psychiatric hospital for it.

During this time i was in my first semester at school during the fall and i had crashed my new car into a pole at the parking lot of my school. This caused stress for me as it was embarrassing to make such a mistake in driving. I fit into the school's social life pretty good even though i transferred from another school in my senior year. However, soon after the car incident i started to play hooky from school and would sleep alot (one of the neg symptons)and i started to have the first signs of delusions of grandeur in that i thought i would move to Hollywood and become a famous director/writer.

I missed over 3 weeks of school and said i had mononucleous to my father who was in the hospital and had no way of forcing me back to school. His girlfriend was living in the apartment with me and my foster father wanted me to spy on her for him. This caused additional stress. I tried to go back to school eventually but had trouble making up the work i had missed. I dropped out and moved back in with my mom who had recently moved to an even smaller town in Missouri called Center.

I repeated a year of high school in 1987-1988 and was still having difficulty getting out of bed to go to school and would make up excuses that i was sick (with a cold or flu), but my mom forced me to go more than my foster father did. I also held a job for about 6 months as a waiter while attending high school. I then started to watch samurai movies and war movies and had the idea of joining the Army Infantry with the hopes of going into Special Forces/Green Berets eventually. So in 1988 in the fall i joined and stayed in successfully until 1990 when i started having problems of coping with reality and responsiblity again. I went a.w.o.l. after deciding that the military life was not for me while stationed in
Korea with an Asian girl who promised me asylum in Japan. I wanted to become an
ex-patriot and live in Tokyo. However, after being used by this Asian girl/spy/student radical who was really Korean and not Japanese like she lied to me--i turned myself in and awaited a court-martial.

After my court-martial i declared conscientious objector status in Jan 1991 and was opposed to the Gulf War. I based my claim mainly on religious convictions (i had converted to Zen Buddhism) although i had hidden political reasons as well. I started going to a mental health hygiene clinic while stationed in Camp Casey, South Korea and told my care-givers that i was paranoid of be- ing shot as a traitor.

Later after being discharged early from the Army in 1991 i had my first full blown episode of schizophrenia and was thankful that they linked my illness with the stress i endured while stationed in Korea. It's another story of how my illness has progressed since 1991 when i had my first psychotic break and i plan to write a book about my experiences of a schizophrenic one day. Im just glad i receive full compensation from the Veterans Admin now as well as SSDI to support myself independently. In summary, looking back to high school when i started to withdraw from school and friends and activities is when i first started to show the negative symptons of schizophrenia. My illness was more or less considered a sudden onset which has a better prognosis because i didn't have my first psychotic break until 1991. However, i am still struggling mainly with the negative symptons of this disease while on haldol 10mg nightly and am awaiting the new drug sertindole to try. Ive already tried respiri- done and due to side effects like a sexual dysfunction i stopped tak ing it and relapsed. I just hope they invent a new drug that works on the negative symptons of schizophrenia as well as the positive and with few or no bad side effects.

From: :Larry

My sister-in-law, Lisa, has just been diagnosed with Schiz. and she is FINALLY getting some medication. My wife's sisters have all known there was "something wrong" since Lisa was about 16 yrs old. She is now about 29, and has really gone downhill pretty steadily, until she has recently had hallucinations and other symptoms that I am now learning are so typical. My monther-in-law has, we think, been in denial because she has been protecting Lisa from any professional treatment for the entire time. The excuses amaze me. I also think she has grossly misinterpreted all the symptoms. I am now realizing that we should have perhaps pushed the issue earlier. The good news is that now Lisa realizes what she has, and she is ready to take treatment. She has just started risperidone, and we are hopeful it will help her return to normal and be able to learn some life skills that she has been unable to learn.

Date: Monday, October 21, 1996

Linda, Thanks for the note. I find it interesting - my brother had many of the same paranoid delusions that your son had. He also thought everything tasted funny and frequently would throw his food away if we walked in the room after he had started eating - saying we had contaminated it. He thought my parents were slipping things into his food and thereby harming him. For many years he wouldn't eat at the same table as us, or eat the same food because of this fear. He would spend a fortune on food because he would only buy things that were small packages of food that were prepackaged - that way he could tell if someone had been messing with it or not.

Several years into the undiagnosed illness my brother started to only drink water and take hand-fulls of vitamins - and lost 30 or 40 lbs very quickly. This terrible diet seemed to quickly worsen his psychosis and the outbursts and voices obviously became much worse during this time. Like your son, my brother spent many hours each day just sitting in a chair staring into space - in fact between the pacing and the sitting - most of the past 10 years were spent doing just that. It was only after getting medication that he could finally converse with people and handle social situations to any significant degree. Yes, similar to your son's experience with his hands, my brother thought for the longest time (two or three years - periodically it seemed) that my parents were clones and that they "changed" - i.e. that different clones were actually being cycled through the house - and really the house they were all living in was rightfully his since they were not his real parents. He thought my parents were shorter than the real parents - and that when they came back from a trip they were actually different people. He also thought the police and city government were all in colusion with my "parents" to ruin his life and control him. He sent out letters to all the world governments and police forces to notify them of the harassment he was enduring in his own house by these people posing as his parents. He wrote page pages and pages of information that made no sense to us.

For the longest time my brother only complained about "tinitis" or a ringing sound in the ears - but then about 7 years into it a psychiatrist asked him if he heard voices. This seemed like such a strange question to us - you just don't walk up to someone and ask if they are hearing voices even if they are a family member. And we just didn't suspect it. By he apparently answered rather matter of factly that "Yes", he did hear voices that weren't actually there - almost saying "didn't everyone?"

My point here is that families shouldn't be afraid about asking if their loved ones that they
think might have schizophrenia - hear voices of people that are not in the room. If they do - they may very well tell you.You said your son "paced constantly or do just the opposite not get out of bed for hours during the day. (he would not sleep at night)" Yes, this also is what my brother did - he would frequently be up all night pacing in his bedroom after baracading the bedroom door with furniture so that the unseen enemy couldn't get him. Then he would sleep until 2pm or 3pm - only to get up, eat, and then sit down to stare into space.

When we travelled together during one summer each night in the hotel room he would baracade the door, put a towel along the bottom of the door, and would only sleep in a sleeping bag he had brought - putting it on top of the hotel bed (presumably because he didn't want to get germs or other poisons left in the bed by other people).You said: " The above are a brief summary of what was happening, so many things occured
during this period I can't remember or have blocked some of it out. I was able to admit him to the hospital by telling him we were just going to the doctor for a check up.

We typed up an on-going summary of everything that my brother had done that seemed strange or different so that when we went to the doctors office we could give them a photocopied summary or printout so that they could very quickly understand my
brother's history and the extent of his illness.

The greater the detail in this document the better - you want to convey the full extent of the illness - so rather than saying in your summary simply that "John leaves the kitchen and will not eat with the rest of the family because of a fear that we are contaminating his food" you might instead say "John has an extreme fear and belief that family members are placing toxins and poisons in his food. Because of this fear he now only purchases food in small prepackaged containers (cans, individually wrapped food items, etc.) that he can eat entirely at one sitting. If he doesn't completely eat or drink what is in that package he will just throw the rest away rather than put it in the refrigerator for later consumption. If we walk into the kitchen while he is eating he will frequently throw all his food garbage because he seems to believe that we have "contaminated it".

While my brother was occasionally violent he also went very calmly with the police when we called them after he had done some particularly high level of damage to the house. I think it was at this time - though it may have been at a different time - that when my brother got to the hospital he would seem to be able to control his psychosis and appear sufficiently normal that the doctors would say that he seems almost normal. From a family standpoint I think the important thing here is that if you are trying to seek treatment for a loved one you might try to:

1. Prepare for their entry into the hospital with as much documentation of their behavior and illness as you can possibly get - the more information you have the more accurate the diagnosis will probably be.  If it is a family member that is ill, sit down with the entire family and write up all the instances that have led you to believe that something is wrong - and fully document them.  Explain in depth the instances.  Its great to first write this down on paper, but later type it into a computer file and print it out for everyone to read.  Then edit so that it has all the information in it, and update it as is needed, or every couple months.  This biography is something you want to give to all the mental health workers that will treat your friend or family member.  This documentation could be very valuable later in getting social security assistance .

2. Work closely with the police or hospital guards beforehand so that they know the nature of the illness and respond accordingly and not with undo force. If possible meet the police or hospital employees that will come to your house to commit your family member - make sure that they understand the nature of the mental illness and ask how they would respond to different possible scenarios - for example if he or she tries to run away, or fight, etc.

3. I think it helps to get very involved with the hospital and the treatment planned for them.
Don't take the approach that once you've got them in the hospital that the doctors will know what to do and will take care of him or her. Try to work closely with them on a daily basis if need be and support your loved one through the experience if possible - find out in detail what the doctors are doing to treat your loved one. Discuss the treatment plans with other families who have loved ones in the same position as your son, daughter or sibling. Also understand what the doctors are doing every step of the way - and discuss it with other NAMI (or other support group members - possibly via this discussion board) to make sure that it isn't the archaic treatment that gets pushed on patients where doctors are out of touch with the state of the art as far as schizophrenia treatment. Anyway, just some thoughts.

From: Melody

I *wish* I could help for my brother who is now homeless and psychotic. His psychosis started when his baby was born and the baby had a massive stroke and is still alive after 3 years but is in effect, a vegetable. He started taking methampetamines to help his deep depression and began to threaten my father and other people. Everyone is afraid of him and I contacted a NAMI person in his area but she was not very nice. He hasn't hit bottom yet, but I'm afraid that he will.

He has extreme paranoia that all the doctors in the country are out to kill him and that they are all linked up by computers who have all this information on him. He has called my uncle, who is a retired doctor, and threatened his life. He has gone to emergency rooms for help, but they always set him lose right away with a few haldol, and that's it. He is wanted by the police and is on the run, too. Sometimes there is just no way you can help someone who doesn't want help. All you can do is pray. Melody

From: Mark

In response to yer post, here are my experiences that I believe was the onset of my
schizophrenia. I believe that the symptoms first started showing themselves at the onset of puberty (which was very early for me). The first things I can remember is that people started to appear smaller than they really were... especially in situations of extreme stress. I had a host of behavioral problems... social et al... The symptoms progressed as I got older.

Paranoia started settling in, visions and hallucinations started to appear, I became withdrawn socially, I had severe behavioral problems (often getting into trouble with the law). Eventually I ended up on the streets. I was 16 when I was first diagnosed. This was after an episode where I was accused of making obscene phone calls to a social worker. I do not remember ever making these calls. I was in denial of the fact that I was schizophrenic and refused medical treatment. In fact, it wasn't until March that I started taking medication for schizophrenia.... this is after 5 independent diagonoses. Hope that helps!!


From: Lisa K.

Thank you for listing your background. I am one who is trying to figure out if a family member has schizophrenia. Everyone listing their experiences and adding input has been very helpful to me already! I'm wondering, you said you were in denial, but did you know, deep down, that something was wrong? And how were you finally come to accept help? - Lisa K.


When I was in denial, I didn't think anything was wrong with me at all. I didn't actually realize that something was wrong until a very good friend of mine pointed out the possiblity of schiz, after I lost a job. I was working at a good job for a large company and I started getting paranoid that the other staff were trying to kill me. Looking back at it now, I see that it was a silly thing to be thinking... but at the time it was very real.

Medications are now helping me very much... I tried Stelazine and didn't have too much luck with it. I am now on Risperdal. I find it to be a very effective medication. I can think more clearly and it addresses the lionshare of my symptoms (No more paranoia, yay!).

Hope it helps! Mark



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