The following are two people's responses to questions about their experience with involuntary treatment. As you might expect, other people's experiences and feelings may differ. Speaking of my own brother's situation I know my brother was very thankful that we hospitalized him but I believe we waited far too long to pursue this option.

For over 9 torturous years we were forced into inactivity because my brother, although locked in his bedroom most of the time and frequently highly delusional, was not yet a clear "danger to himself or others." After my brother was finally put on medication (risperdal) he was dramatically better; the voices were gone, the social withdrawl ended and he seemed to be on the road to recovery.

But then very suddenly things took a turn for the worse. The loss of 10 important years of his life right after college while all his friends had gone onto graduate school and careers, the realization of that many if not all his original career goals were probably unattainable, a sudden reduction in his medication, a bout of depression and week of stormy gloomy weather while my parents took a vacation were all, I think, significant contributors to his suicide.

If I could have another chance I'd realize much sooner that we are in a fight to save a life; I would gladly "fudge a bit" on the description of "danger to himself or others" and would try to get treatment as soon as possible. Research now shows that the longer you wait the worse the long term outcome for the person with schizophrenia - this is information our family didn't have at the time. I'd also work with the doctor to make sure that any depression was recognized early and treated with the many medications that are available - its also well documented now that individuals with schizophrenia frequently also have mood disorders that must be addressed.

I'd also work very closely with the doctors to understand my brother's illness and state - because it turned out that my brother had been identified at the hospital as a high risk of suicide, but that information did not get conveyed to our local psychiatrist nor to our family.

While I hope your son, daughter, sibling or friend never has to receive involuntary treatment I also hope that you'll realize that Schizophrenia is a highly deadly disease (upwards of 40% of those with schizophrenia attempt suicide, and approximately half succeed) and that involuntary treatment may save your loved one's life.

While I have yet to see any statistics on the feelings of people who have gone through involuntary treatment, the overwhelming majority of personal responses I've received have been positive. As you might expect from a person who is very sick but recovering, they look back with appreciatiation on assistance given when they are too sick to help themselves. Following are two recent stories for your review. I hope you find them of value.

individuals

Two People's experiences with Schizophrenia and Involuntary Treatment

(Note: The answers were initiated in response to questions by a student on a schizophrenia discussion list:)

Hello to all of you once again! I have read all of your letters and again I thank you for all of your help with my assignment. I have been given a list of questions from several of you that I find extremely helpful. Great questions. I have sort of incorporated a bunch of them together. Here it goes and I truly don't mean to offend anyone!

1. How would you describe the begining of your illness? Did you feel it coming on? As children did you have some sort of feeling or"clue" that this would happen to you?

2. How has this affected your family, especially your children if you have any, or your spouse if you have/had one?

3. During your illnes are you "conscious" of what is taking place? Are you aware that it is happening, but have no control over it?

4. What have you "learned" from your experience with your illness?

5. How do you feel about involuntary commitment into a hospital?

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Paula's Response

Date: Wed, 5 Mar 1997

Hi! I will anwer some of your questions.

1) Yes, I did feel a clue that I would have schizophrenia. I felt very strange and alien, and told my mother about this, which is actually a symptom of the illness. When I was in high school, I saw an old movie about a schizophrenic person experiencing delusions, and I thought, "oh no, that's going to happen to me", even though I had never experienced delusions. All throughout grade school I kept wondering what was wrong with me, and asking my parents if something had happened to me during my birth. My primary syptoms at the time though were limited to negative ones, (ie, social withdrawal, disorganization, not hearing voices or having delusions). In fact, I did have a traumatic birth, and many researchers believe such an event is partially responsible for schizophrenia.

2) I don't have children. I didn't get married, at one point, because of it. I had given up hope of ever being successful at work or anything, and so I didn't function very well at all in my relationship to the man I was engaged to. It has affected my mother greatly, because she had me involuntarily committed to a hospital.

3)Yes, I am conscious of what is taking place during my illness, although at first I thought I was hearing real people talk to me, because the voices I heard sounded just like my parents and my employers, etc. But now I recognize that what the "people" are saying is highly unlikley, so I must be hearing voices. While I hear voices and experience other symptoms, I am still aware of what is actually happening around me. Sometimes I will hear someone say what they really said, then hear them add on something else which they really didn't say.

A few times when I was driving I saw people who really weren't there, but I still saw everthing that was there, so didn't get into any accidents. The only time I was somewhat unaware of reality was when I was catatonic for about a week. I guess somehow I still got up and got dressed and ate. But then I would lie perfectly still for hours on end, dreaming. And I have very few memories of what was really happening around me, just of what happened in my dreams, even though I knew I was dreaming.

4) As far as number four goes, I have probobly learned more than I realize. I have learned how lucky I am to be alive. I have learned how strong my mother is, to be able to go through a year of my psychosis, then have to hospitalize me. I have learned how lucky I am to be on medications, which have made me stop hearing voices almost entirely, and have gotten rid of some of my negative symptoms, too, such as being intractible, and not laughing or smiling.

I have learned that I am a very caring, empathetic person, from the support group that I go to, people have commented on how helpful I am in that regard. I have also learned to try not to have too much stress in my life, as it is a known fact that that causes the symptoms to flare up. So I will no longer try to work two jobs, or work and go to school, for example.

5) Was number 5 about involuntary commitment?? I know many people have sincere reservations about it. I was involuntarily committed to the hospital by my mother about a year ago. I feel that it definitley saved my life, in more ways than one. My parents didn't know that I was trying to figure out how I would be able to keep on going. But they sort of fudged it and told the police that I was going to take my life, and that I had been off medications (even though I actually had refused to see a doctor and therefore wasn't supposed to be taking medications, even though I sure did need them).

So the police questioned me, and I made absolutely no sense at all, and they took me in. I called and told my parents I wanted out. So they came up and said that if I would sign a paper that I would get on and stick with medications, I would be able to come home right away. (My mother had planned this way ahead of time, and knew for sure that I was schizophrenic, and had waited to see if I could get better on my own, which I definitely wasn't). So I signed the paper, took Risperidol, and my life has been immeasurably better ever since. I was in such bad shape that I am sure that my brain cells were going to start deteriorating, which happens if you get psychotic and you aren't on meds. So they saved my life, and my mind, not to mention my sanity, because even though I am mentally ill, I was loosing my sanity, too, because I thought they were having me followed every where, which was driving me nuts, when it was just the voices I was hearing.

So, I believe that involuntary commitment, when planned out carefully with a social worker, like they did, and when you sense that someone might harm themselves or others, or is detiorating, like I was, too, is very important to be able to do, especially with the goal of having the person be able to get out of the hospital/ recieve less treatment if possible, as long as they are getting what they need, but not like sticking them in the hospital and not thinking about how to get them as better as quickly as possible. I hope I was able to communicate my ideas clearly enough.

Good luck with your assignment!

Paula.

Michael's Response:

>1. How would you describe the begining of your illness? Did you feel it coming on? As children did you have some sort of feeling or"clue" that this would happen to you?

Abrupt. 8 months after my mom died, I had a bad day at work and wound up in a mental hospital. I didn't realize that it was schizophrenia until I tried going off my medication years later.

>2. How has this affected your family, especially your children if you have any, or your spouse if you have/had one?

My dad ultimately disowned me.

>3. During your illnes are you "conscious" of what is taking place? Are you aware that it is happening, but have no control over it?

I remember everything, especially the terror of loosing my sense of _self_.

>4. What have you "learned" from your experience with your illness?

To never go off my medication!

>5. How do you feel about involuntary commitment into a hospital?

When I have TOTALLY lost my self, I pray that someone gets me the treatment I need that I can't ask for myself!