I am the first Portland, Oregon-area woman author to publish a memoir about schizoaffective disorder (a little talked about diagnosis of bipolar disorder and schizophrenia). My memoir is called, Sherry Goes Sane: Living A Life With Schizo-Affective Disorder. Most books on mental illness are written by doctors and clinicians, but I feel the personal stories of “lived experience”- like mine and others fighting the pressure of stigma with mental health disorders- are more meaningful because they help us to see the person first, not the diagnoses. Schizo-affective disorder is a hard disease to tackle. Societal pressures seem to dominate your routine and the sheer process of overcoming the stigma of this disease is complicated.
I remember when I was young, I used to think people were talking about me and judging me because of who I was. My paranoia carried over into my adulthood. I felt paranoid because I couldn’t focus on something beside myself when people looked at me funny. When I was really upset about something I shook. My knees became rubbery as I disagreed with a speaker in a meeting. Being around higher ups, I felt like I was going to erupt like a tempestuous volcano. I hung my head, not humble like, but in disgrace of not accepting myself for being me. My ship was sinking. My shakiness and weak knees didn’t necessarily stem from my disease. It happened when I was physically abused by my stepfather for defending my brother when he was 7. My stepfather and my mother left him alone to go drinking and when they came back home, I arrived home from work and stood up for my brother. I took a blow to the jaw. My world fell apart and my life changed course.
In my later teens, I lived in the hippie era. Those years were characterized by driving around in a white Studebaker with flowered decals on the top and sides, struggling with hallucinations from stress and experimenting with drugs. In my 20’s I was in lockdown in several mental health institutions and Oregon State Hospital was one of them. In 1972, I marched to the state capitol in Salem by myself and fought for equal pay rights- and was later sent a letter from the attorney general that there would be no more discrimination in the work force. Things changed since then and I became an artist, a certified nurse aide and a teacher. With the help of medication and health care professionals I overcame the childhood abuse from my alcoholic parents, the suicide of my mother, and the loss of my brother to AIDS.
There were the times when I was off of my medication that depression seemed like a dead end street and the suicide attempts made it unbearable. I’d be so high on life that I thought I was Jesus Christ. I asked myself, “Did anyone know the person who lived inside my head?” The answer is “No.”
The thing is that my sister, my friends, and other people of society were busy with their own lives. There were weddings to plan, deaths in the family, and babies being born. Life was going on before allof my trauma and continued to go on. They weren’t shunning me. They were just having different experiences than me. But I felt I carried the weight myself. I lost my job as a Preschool teacher but there wasn’t any reason for me to lose my job. The establishment did know about my disorder. I applied at another Day Care Institution and there was a question on the form that asked, “Do you see a psychiatrist? Or have you seen a psychiatrist? Do you have any mental health issues?” I said, “Yes,” because I wanted to be honest. Their reply was to give me a lot of propaganda- like Psychiatry is the theater of death. So I filed a civil suit and won my case. That was my first legal fight against stigma. I finally realized I could beat the system of stigma, and the effects it had on myself and others and in return lift my paranoia.
Over the last 46 years of dealing with schizoaffective disorder, I found that I could turn around the pressure of criticism and self- doubt by establishing a plan. I created Sherry’s Master Plan to help me become stable and to give hope to others struggling with this disorder. Measures I took to maintain my stability are outlined in my plan here:
- Called the doctor or crisis line in case of a crisis.
- Took my medication on time and never went off my medication. Ate healthy foods and took vitamin supplements. Got plenty of rest. Informed the doctor of my symptoms and the side effects of my medicine.
- Spotted when I was going out of control and found out what trigged a crisis and wrote it down. When I was panicky or paranoid, I talked to a trusted friend, my sister, husband, doctor or counselor about it and got a reality check and feedback.
- Made a schedule of the days of the week and graded my activity for that day. I could then see how much I accomplished for that day and spot when I was going out of control.
- Had a support group, members of NAMI. Discussed my steps to recovery with them.
- Drew a diagram of the things I loved, liked and didn’t like and reviewed them every day.
- Meditated, walked, painted, and listened to self-affirmation tapes.
I also regularly share my stories of recovery with others and love doing so. I am a lecturer in a Portland-area hospital inpatient psychiatric ward-sharing hope and resources for when patients leave the hospital- and a trained “In Our Own Voice” speaker for the National Alliance on Mental Illness (NAMI). I recently participated in a history project at the Oregon State Hospital Museum and they recorded an interview about my experiences there back in the 1970’s.
Sherry M. Joiner