Our Readers' Lives with Schizophrenia

Chapter 2. First Symptoms


Updated: July 19th, 2001

Recognizing That Something Isn't Right

Reba, mother of Eric:
It is of utmost importance that parents keep their eyes, ears, and minds open and objectively view their child's behavior and seek professional help immediately before the illness progresses. I tried desperately to convince other family members and professionals that my son, age 20 at the time, was suffering severely. He would sleep for 16-20 hours a day and was extremely sensitive to light and noise. He would roam at night for a few hours, restless. He complained of severe headaches and his bizarre behavior made him impossible to live with. He had hallucinations, delusions, heard voices including the voice of God, became socially withdrawn and isolated. He suffered from paranoia and could not concentrate. He was afraid to watch TV for fear that "things" would come out of it and "get him." He displayed obsessive-compulsive behavior by constantly washing his hands and face. He would stare at himself in the mirror while making weird facial expressions. Unfortunately, no one believed that Eric, a highly intelligent, good-looking track star, would behave inappropriately as I described. To my sorrow, it has taken seven years to finally get a diagnosis. In the meantime, Eric fell through the cracks wandering aimlessly making his home on the city streets being subjected to more anguish and suffering. He went for several years without contacting home. Fortunately, he was rescued off the streets of Los Angeles and taken to the hospital where he was first diagnosed with schizophrenia. Since 1997, he has spent most of his time getting stabilized and participating in his group in hospital. He is now living in a group home and doing better but his road to managing his illness will be a very long one. For seven years he was in denial, making necessary treatment impossible. Early detection and diagnosis is extremely important in the treatment and management of this devastating disorder.

Audrey:
[Sept. 1999]
I am the mother of a child who was born with Schizophrenia. I have never heard of this happening before. He was diagnosed at the age of ten. He is now twelve and doing well on medications. He goes to a special school for children with mental illnesses. I am concerned about my child's future and the likelihood of his overcoming his disease. He functions well in a world which has been adapted to his needs, but still requires almost constant supervision. The drugs have done wonders in making him co-operative enough to teach and live with, but they do not make him adaptable to the "real" world of children his own age. I would like some feedback from anyone who has experience with childhood schizophrenia.

Mike:
[Nov. 9, 1999]
My first symptoms began in middle school when I thought I was the focus of everyone's attention. I believed that every conversation or every laugh was an indication that others were ridiculing me. I lived in terror that regardless of my behavior, others would inevitably hurt me. I hid in a shell, and learned to only interact with other children that could best be described as deviants and loners.

I slowly became paranoid, questioning others motives constantly. Feeling I was always on the outside of normalcy, I developed an inner sense of rage toward people and life. I hated myself, my idiosyncratic behavior, and my isolating beliefs.

From the beginning I knew I was not like other people and that my chances for a normal, successful life were slim.

Lindsay:
[Dec. 1999]
I was thirteen when I first had signs of Schizophrenia. I never realized something was wrong though, because the hallucinations and the delusions were so real to me. I was afraid of everyone. Video cameras were lodged all over my room and the government was watching me. There were times when I thought aliens were communicating to me through the street lights. I couldn't talk in the car, because the CIA had tapped our radio to hear my mother and my conversations. I also heard voices and couldn't sleep at night. In fact I got expelled from school when my grades went down the drain for threatening to kill someone because "Mr. X" (the man in my head) told me to. During the expulsion was when I thought I was a vampire and I began staying up all night and sleeping all day. I also quit taking care of myself and stopped eating adequately. I was so confused!

Anonymous:
[Dec. 22, 1999]
I have a family background of Autism Spectrum Disorders and only last week was I diagnosed Schizophrenic. I spent some time in hospital after telling my psychologist that someone was telling me that I had to set myself on fire to purify myself. I felt compelled to obey this implanted thought and felt very calm and controlled about it. I am female 40+ and have had paranoid feelings regarding video cameras monitoring me and microphones picking up my thoughts, for about 3 or 4 years. I have a good life otherwise even though I am socially withdrawn and always have been. Depression and poor sleep patterns as well as menopause are also making life a bit difficult but I am taking all sorts of medication now and have a good support network, I think that is really important.

Scott:
[Feb. 1, 2000]
My experience with this disorder has been a long one. Over 15 years. No one can know the pain, anguish, degradation, and sorrow felt with it. However, with sheer will, the Grace of God, family, friends, and neighbors, this illness will be conquered. I felt obligated to resume college at the age of 20 and it cost me. The sight of the surroundings shook side to side and before I knew it I was hallucinating. I have been hospitalized 4 times and I am now in a state of depression. However, I am working at least 3 days a week, and plan on cleaning up my apartment. I am on 3 kinds of meds. Don't give up the ship! It's a continuous process. Like that old Chinese boss told me, "Think Ahead!"

Marguerite:
[July 20, 2000]
I first started having suspiciousness and paranoia at around age 28 and left a great job because I was afraid of being fired. I began thinking everyone was looking and laughing at me and they were gossiping about me. This began to preoccupy my thoughts and I was extremely distressed and started to withdraw and isolate. I would sit and stare and be preoccupied by fantasies and delusions of persecution. I felt there were people who hated me and wanted to see me dead. I went to a therapist who recommended I see a psychiatrist, but I refused to go. I didn't believe I was sick and was afraid of stigma. I only wish that someone had been more aggressive with me in getting me to a psychiatrist. It would have saved a lot of pain, heartache and nearly losing everything in my life due to this untreated illness. Luckily I am now on medication and have few symptoms with Risperdal. I know now that I have an illness and that I need my medication. Thank heaven for modern medication!

John:
[Sept. 2, 2000]
I am male and twenty-six and I am a sufferer from schizophrenia. My first symptoms came when I was seventeen.

I felt that intelligence agents had bugged my living room. In the beginning, I had the insight or awareness to realize this was unlikely to be true and I explained these paranoid feelings away.It had been a difficult period; my parents had separated and I was at a new school I did not like and so on. But I soon found it was more than just pressure.

It was only a year later when I dropped out of law school that I completely lost touch with reality: I was now convinced that I was being bugged. I could visualize the van that was parked somewhere in the neighbourhood that contained the men who monitored my words. I even believed my neighbours had co-operated with the intelligence services to plant the bug.

This was my first symptom.

Anonymous:
[Sept. 24, 2000]
I was full of rage and disproportionate anger. I seemed to see it from me all the time. I was only 13 years old and really rebellious. I hated everything and everybody. I used to throw chairs at my teachers and swear at them. My parents were at a loss as to know what to do. I was also very depressed and was crying all the time. Many people thought it was just teenage angst, but I knew there was something wrong with me. I tried to commit suicide and was always listening to depressing music. I became so withdrawn from others that I forgot how to function properly around people. I was always sitting alone in my bedroom completely isolated, and loved it.

Then, I was okay again, until I hit the age of 17. I became very depressed and lived in two worlds: one was dark, black, shallow, empty and very sad. The other was beautiful, happy, ecstatic, and ethereal. I lost touch with reality and thought that I was in love with everything and that everybody was so good and even godlike. I started hearing voices and thought that I really did live on a different planet where I exuded love, and everything around me was evil. The plants outside had withered, turned black, and died. In addition, a sickly stench emitted from them. Animals turned into ravenous beasts. Even a friendly cat down the road terrified me. Then, gradually, I was okay again until I hit the age of 21 and was admitted into a psychiatric hospital where I was diagnosed as having Schizophrenia and Major Depression. However, my psychoses, in general, seemed less extreme. Three years later, my symptoms were lifting and I could be moved into a small counsel flat. As many people in my situation realize, it is difficult to take medication regularly. I sometimes felt that I was healed, but the fruitage of the situation often testified otherwise, resulting in a number of varied suicide attempts and psychosis. Happily though, I met a very understanding man who also suffered from Depression. In quite a short period of time we found ourselves to be mutually supportive. Things appeared difficult for us, but we knew more underneath and we have now been happily married for two years.

I hope in some way that perhaps this will help someone in whatever way it can, even if it is just knowing that someone is there. It is good to write about it!

Laura:
[Oct. 19, 2000]
I am 33 years old and I had a son at 17 who was born with severe mental health problems and mental retardation. He has been diagnosed with Schizoaffective Disorder, A.D.H.D., Social Phobia, Anxiety Disorder, Disruptive Behavior Disorder, and many other ones. My son has been hospitalized two times and he is only 15 years old. The first time I couldn't believe the hatred in his eyes, I couldn't believe this was my son! He was standing in front of me swearing and hitting me, telling me how much he hated me that I wasn't his mother and he was going to kill me. All of this was coming out of my 11-year-old son's mouth while his brother and sister were there!

And now just this year in April my second son was hospitalized for 5 days. He said he heard voices in his head. I told the doctor that something was seriously wrong with him and he said I was over reacting. My second son only had A.D.H.D., not to worry. A few months later my son set the house on fire. Everything was destroyed. Then he shoplifted at a country fair store and said he wished he were dead. I called the doctor and the doctor says still he sees no grounds for admitting my son nor would he see him! I took him to the emergency room where they evaluated him and admitted him into the mental health ward. They are not for sure what he has but they did say he had a high level of anxiety and depression, that he was having trouble telling the difference between fantasy and reality.

It's been six months and now I'm on depression medicine and Valium. It seems like it never ends. I tell myself live one day at a time but it's hard especially with the family like I got.

Brian:
[June 12, 2001]
Just a few of the things I had noticed were my thoughts seemed to be broadcasting on the radio. I would be thinking more and more that everyone was trying to get me, that there was a plot to get control of me. I had also thought that maybe I was the last of the anointed and that maybe I was the Jesus of old, or one of his apostles. Then the feeling that everyone knew who I was and yet I still did not know.

I could go on, but why?

Patricia:
[June 22, 2001]
My name is Patricia. It has been almost four years since I had the onset of Schizophrenia. Through that time I have lost my family, four jobs, had at least seven nervous breakdowns before coming to terms with my illness. During my seven trips to the hospital not once was I told what I had and that the medicine would make me better. I was everything. I was delusional, paranoid, depressed, and had hallucinations. I heard voices so distinct that I wrote their names in a book. Using what I was told (inside my head) their own handwriting to list the names of the people who called. I once went to my mother and told her that my Aunt Charolette called me up in my head and said to tell her hello. I had the delusion that the mafia was after me and that if I told anyone, the person I told would die. So I never told anyone my feelings. Once during an episode I thought I was Moses. I had my long white terry cloth robe on and I commenced to go outside and run along the hillside calling up elk. Then I went to the edge of a cliff where I was just sitting, watching traffic go by. The neighbors saw me and became alarmed that I would fall and hurt myself. They called my poor mother. By the time she found me I was back in the house acting like nothing had happened. I ended up in the hospital where I was given haldol. It made me have suicidal thoughts. It is my personal opinion that they shouldn't give a dog this medication. Every time I went into the hospital and came out I had to learn everything all over again. Finally my doctor got me on the right kind of medication and changed my life around. My mother and sister thought I should be put on disability, but I couldn't see myself sitting around be nonproductive. I fought hard. I was hospitalized in March. My boss fought for me to maintain my position here at the university. She said I had been doing a great job and she didn't want anyone else for a secretary. She gave me such confidence in a world that looks on us as unfit. My children stopped seeing me because one day my daughter called me, and the police answered. They were taking me to the hospital. My sister and mother had come to my house to take me to see the doctor. I didn't want to go back in the hospital so I fought them. It was so demeaning to go in there. We played bingo. That was the extent of my care. No one talked to me about what was going on. I too thought that people were watching me. My delusions were so extensive that I thought people could see every move I made. So when I was alone I would do things to see if anyone would say anything to me about it. I was lost for almost four years. Then one day when I came home from the hospital I could see that I had been sick. How sick I was. The medication had finally taken hold. I am still learning how to cope with this illness. I wish I could meet other people who have been through this. I think it would help to talk to someone who has been down the same road. I thank you for the opportunity to share this. I am thinking of writing a book. I want to share with others so that they won't have to go through what I have. I lost my children because of all of this. It still makes me sad.

Patricia:
[June 22, 2001]
I have written before. I have so much to tell about my illness. I wanted to add, that one-day I would be in the hospital on a behavior medicine ward and the next day I would be working in the President's office of our local college. It was like riding a roller coaster. When I was in the hospital, not knowing what I had, I couldn't tell anyone because of the illness. It was so ingrained in my head that telling was bad. That something terrible would happen to the world if I divulged what was happening. That is why I feel it is so important for someone diagnosed with schizophrenia to be told about the illness. My illness started with a great depression. I would stand in my kitchen and cry buckets of tears not really knowing why I was crying. I too had delusions that the radio was sending me messages. I am working at the university full time. I see a therapist. I had to ask to be seen by one. The hospitals failed me in that they never communicated with me. We had group meetings. There we discussed what we wanted to do during group activity. Did we want to play bowling or bingo? I failed to see how participating in an activity such as this was supposed to help us with our illness. I am resentful of the time I had to spend in the hospital. If someone would have comforted me, put a warm blanket around me and told me they cared, that would have been more treatment than I received in the hospital. I am now flooded with hospital bills. My credit has been ruined. All my debts have been turned over to a collection agency. I have been told that it will remain on my credit report for seven years. My insurance refused to pay because I failed to get authorization prior to going to the hospital. How can you get preauthorization when you are in a catatonic state? I lost a job because I went in one day and gave my resignation out of the blue. The voice in my head told me to do it. I was held accountable even though I was hospitalized right after that. I have so much to tell and this is the first venue that I have had the opportunity to do so. I am just grateful that I have a great support group. My family, mother, sisters, boss, and some really great neighbors who recognize what I have as an illness. I feel like I am just starting my life. Working here at the university I will be afforded the opportunity to take classes. Something I have always dreamed of doing. With all the bad that has happened to me because of my illness, God has found a way to bless me ten fold. It is reassuring to know that there are other people out there that have gone through what I have. I am a woman, forty-nine years old. Starting over. I have gone through menopause. Not once did they ever treat me for that. I feel they just gave me medication in the hospital to obtain the response they wanted. In other words drugged me up until I came down from an episode. I had a great doctor who didn't treat me while I was in the hospital because my insurance wouldn't pay for the ambulance to transport me to his facility. Nevertheless, when I was released I called him and he gave me the medication Seroquel and Paxil. They changed everything. They changed the way I perceived things. I will never be without it. Thank you again for giving us the opportunity to share with others.

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