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In her own words: living with schizophrenia

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Sue* was diagnosed with schizophrenia when she was 19. She is now 53 years old and lives on her own. She is divorced, and has a 26-year-old daughter who she gave up for adoption and a 35-year-old daughter who lives in the same town and she sees periodically.

Sue’s mother has been her primary caregiver, even though Sue has managed to live on her own for most of her adult years. Because some of the questions were difficult for Sue to answer, her mother’s responses have been included for clarification.

What was your first sign that something was wrong? What symptoms did you experience?

My mind goes blank when I try to think about that. I can't really answer that question.

Sue’s mother: When she was in high school her grades would fluctuate between As and Fs. We had her evaluated by the school psychologist who said that Sue's grades and behavior indicated there was a problem, but told us that it was probably just teenage rebellion. She was very talented in literature. She had a story published in the Chicago Tribune when she was in high school, yet she would fail her English class. We later learned that she was hearing voices.

What was the diagnosis experience like?

I always wondered, “What’s wrong with me?” My high school journalism teacher told me that I should talk to a doctor to find out what was wrong with the way I think. So I went to the doctor and he told me I had paranoid schizophrenia, manic depression, and epilepsy.

Sue’s mother: She was actually first hospitalized when she was 21 years old. She and her 3-year-old daughter were living with my husband and me at the time. One morning my husband found Sue watching her daughter playing with her (Sue’s) medication, which was Thorazine. We were not aware that she was even on any medication, nor had anyone ever discussed a diagnosis of schizophrenia with us. My husband got in touch with our family doctor right away, and he admitted Sue to a mental facility. It was at this time that a diagnosis of differentiated schizophrenia was first mentioned to us.

What was your initial and then longer-term reaction to the diagnosis?

I didn’t care. I knew something was wrong with me, I just didn’t know what was wrong with me. All I knew is that I couldn't keep a job, or at least the kind of jobs you need in order to pay bills. I wanted to pay my bills and live on my own, but I wasn't very good at managing my money. My mother would try to help me manage my money, but I didn’t like for her to help me.

How do you manage schizophrenia?

I take Prolixin, Zyprexa, and Depakote. I work full time at Wendy’s. My medicine settles me down so I can hold down a job. If I don't take my medicine, I get tense and I get the shakes. Sometimes my boss tells me I need to go home and rest before I come back to work. My medicine helps so that my highs aren't so high and my lows aren't so low. I feel like I'm in control of myself. I also go to Behavior Core once a week. They teach us good behavior and we can talk out our problems with a therapist. They also make sure we are taking our medicine. If I don't go to Behavior Core once a week, Medicare and Medicaid won't pay for my medicine.

Sue’s mother: Sue does so much better when she is on her medication. If she stops, by the time it gets out of her system, she's out of control again. She usually ends up being hospitalized when that happens. She's been hospitalized a total of three times, and she hates it.

Did you have to make any lifestyle or dietary changes in response to having schizophrenia?

I don't go to bars anymore; I don't smoke anymore; I don't date anymore; and I don't have men over to my house anymore. I used to do all these things, and I got into a lot of trouble. I've made lots of progress with my behavior. I'm more mature, and I'm getting into a routine. I have to watch my weight, especially since I'm getting older. My medicine causes water retention so I have to be careful to not eat many foods that have a lot of salt in them. I go to T.O.P.S. (Take Off Pounds Sensibly) with my mom. I also need to do more walking.

Sue’s mother: Sue was smoking marijuana and drinking a lot from the time she graduated from high school. I remember one time I was taking her to the psychiatrist and I told her she should talk to him about her drinking and smoking. She told him about it that day, and he told her that she couldn't get her driver’s license until she was off the drugs and alcohol, so he helped her get off that.

Did you seek any type of emotional support?

My caseworker looks after me, and I call her if I'm having problems. I also talk out my problems on Monday night when I go to Behavior Core. They teach social skills and manners to the mentally ill. I used to call the crisis line when I needed to talk out my problems, but I called them too much, so I'm not supposed to call them anymore. Since I can't call the crisis line, I just call my girlfriend every night. We understand each other. Then, every two months I see my psychiatrist.

Does having schizophrenia have an impact on your family?

When I was younger and I was partying a lot, my family stayed away from me. But when I act good and take my medicine, they treat me better. They like it when I go to therapy, take my medicine, and hold down a steady job. My brother and sister are married and have children. They have good jobs and they know how to manage their money. I'm divorced and have two children from different fathers, so that's not good. I gave one of my daughters up for adoption and the other daughter lives with my mother.

Sue’s mother: It has been difficult, because we didn’t understand the illness. There weren't any support groups at the time that we were aware of. We were concerned about her lifestyle and the effect it was having on her daughter. I became the primary caretaker of her daughter from the time Sue was hospitalized the first time, when my granddaughter was three years old.

What advice would you give to anyone living with schizophrenia?

I'm not really in a position to give advice.

*Not her real name

Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.