Schizophrenia: In Their Own Voices

Last week I was at a one-day conference put on by NAMI San Diego and the Senior Mental Health Partnership. My good friend Sally Shepherd (pictured here) was one of the speakers. Just days before, she had been informed that a study she had played a major role in designing and implementing had been accepted by The Schizophrenia Bulletin. The study sheds important light on how those with schizophrenia see themselves. 

Sally and her fellow investigators interviewed 38 individuals with schizophrenia aged 50 and over, living in board and cares and unemployed. They asked six very basic questions, and essentially listened, just listened.

Significantly, only a quarter of the interviewees included relationships with family members in their criteria for "quality of life." Nearly half had never married. The remaining participants reported experiencing significant marital discord, including emotional abuse. Only two remained in long-term marriages.

In their own voices ...

Early Experience with Schizophrenia

But when you are labeled a schizophrenic or have psychosis and you don't understand it because you didn't learn about it prior to and you're like, all of a sudden you're in this nightmare, and with nobody to help you because nobody understands, nobody's in it with you. The whole world is dead; you're the only one alive in this big graveyard, which is the world. You have to survive with no money and no place to sleep and all these dead people trying to kill you or whatever, rob you of your sanity is more like it, same thing.

Personal Loss

It's not what I thought I'd have when I was younger. I thought I'd be doing something else. I didn't think I was going to be on Social Security when I was younger. I thought I was going to be a scientist.

Loss of Independence

In '98, I was sitting in the courtyard in the unit I was on. I was smoking my cigarette and went to find my [counselor]. I told her, "I don't want to die here, V. I don't want to die at [State Hospital]. V, what can I do?"

Self-Doubt

I asked her once, "Where did we go wrong? Why are we in these board and care homes?" I feel like we're here because people have given up on us or we've given up on ourselves.

Hopes and Dreams

I'm going to feel regretful because I never lived lived; I never had a chance to live. I never had a life. If I was just 21 and had accomplished my dream of a good job and my wife, my kids ...

Resignation

I have a roof over my head, I have food and clothing and my computer and my stereo, and if I compare my life with some of those starving in other countries, it's like I'm living in heaven compared to them.