A Vain & Misguided Decision: Abandoning Schizoaffective Disorder Medication

by Danielle Flore

I was born in Los Angeles to a large, Catholic family and went to Catholic school for twelve years. I had a stable and loving home life, and we attended church every Sunday. School was somewhat less stable and loving. I struggled to navigate my school years, and my lack of social skills became increasingly noticeable in high school. I had only a handful of friends. It has always been challenging for me to make and maintain friendships. My social awareness deficit may or may not have been an early indicator of a predisposition to mental illness.

In high school, I clung to my childhood friends, and would do anything to stay friends with them, including smoking marijuana. Marijuana use in young adults has been linked to developing schizophrenia, which I did not know at the time. Later, I progressed to other drugs. I knew hallucinogens were dangerous, but I dabbled in them anyway. The first time anyone noticed and mentioned to me anything about my mental illness was in my junior year of high school when the school psychologist saw me “pill-rolling,” or tracing a circle with two of my fingertips. After observing this behavior, she told me that I would develop schizophrenia, in front of my entire psychology class. I was embarrassed and angered by her words, words that haunted me.

I started having issues differentiating fact from fiction in college. I was attending UC Santa Barbara, where I drank alcohol every weekend and continued with my marijuana use. I started daydreaming about a local drummer named “Trey.” I thought he was interested in me as well, but we never dated and, even today, I am not sure we ever actually spoke to each other. Every now and then, I would see Trey around, and I began referring to him as “my stalker.” My daydreaming slowly blended into a fixation, which effortlessly morphed into an obsession. No one else believed he was at all interested in me at all, much less stalking me. Throughout college, I grew increasingly isolated and depressed.

In 1998, college ended, and I never saw Trey again. I didn’t really formed strong friendships with my college peers. I began years of ruminating about what might have been. I am old-fashioned and would have loved to get married, right out of college. I was very disappointed that I never married my college sweetheart. I started hearing Trey’s voice in my head. That voice was frequently abusive, swearing at me. I felt strangled by my solitude. I turned to my mother, who was also my closest friend. I trusted her and I knew that, if anyone could help me, she could. I wasted no time telling her that I was hearing a voice in my head. She acted promptly as well, sending me to see a psychiatrist at UCLA. In addition to hearing voices, I also admitted to believing in magic. If the voice in my head wasn’t enough, this was the red flag that my psychiatrist needed. He reassured me that there was no magic happening here. I was diagnosed with depression with psychosis, or schizoaffective disorder.

In 1999, I moved to San Diego and met my current psychiatrist. She prescribed me an atypical antipsychotic, which worked for the next 20 years. I took my medicine regularly and avoided alcohol and drugs. My symptoms were under control and I led a fairly stable life. I found work as a secretary and that is where I met my husband, Stephen. We were good friends at first, and then we dated for a few years, marrying in 2004. We had three children and a stable, loving home together. Despite taking my medication regularly, I continued to think I had sightings of Trey around San Diego. It is possible, I reasoned, that he vacationed here occasionally, as San Diego is a very popular tourist destination. My voices were well-controlled for many years. I felt so good that Stephen and I thought, perhaps I was misdiagnosed. We thought stopping my medication would not be a problem. I wanted to lose weight after having my third child and I blamed my medication for hindering my weight loss. In 2013, I went off my medication and I started focusing on Trey again. I kept this decision a secret from my psychiatrist and the rest of my family.

It was a vain and misguided decision that sent my life into disarray. I was so focused on working out and achieving my weight loss goals that I was unaware psychosis crept back into my life. I grew more and more dissatisfied with my home life. I started thinking about Trey and my college years again. My illness caused me to invent many positive memories about Trey. I then sought to find Trey on Facebook. I never knew his last name so it was a complete fluke that I found him on Facebook. I thought it was a sign that we were meant to be. I added him as a friend on Facebook. He had gone to medical school and became a radiologist. I was impressed with what I saw on Facebook, but he was married. Facebook brought me an imagined, artificial closeness to him. I became obsessed with looking at his and his wife’s Facebook pages. I commented that he looked handsome in one of his pictures. I would try to post things that I thought would impress him. My husband was not on Facebook, so it was my little secret.

Not taking my medication started to create positive schizoaffective symptoms. I began hearing Trey’s voice in my head again. I communicated with him privately in my mind and enjoyed this for a while. As this progressed, I found that I could cope less and less with reality. I started arguing with my husband, eventually asking for a divorce. A voice in my head, who I believed was Trey, told me to do this. I told Stephen that I was leaving him for “my boyfriend, Trey.” In that moment, I knew that Stephen believed that I was having an affair and leaving him for another man. I could tell by the stunned, broken look on his face. Having no place to go, Stephen checked into a local motel for a few weeks. Stephen would call to speak to the children but I was too afraid to pick up the phone. This lasted for over a month. He would leave messages for me and I could tell by the sound of his voice that he was miserable. I was so preoccupied with Trey that I rarely picked up the phone. Stephen warned me, before I left him, to make sure the person I was leaving him for felt the same way about me. I was so oblivious that I completely disregarded what Stephen said to me. I was not hearing him. I was hearing Trey.

After my husband moved out, I began wandering around obeying the odd requests of the voice in my head. At one point, I stopped hearing Trey’s voice in my head. I felt abandoned by him. Now, there were three main voices in my head. The voices told me that they were Trey’s wife and her two friends. These voices were cruel compared to Trey’s voice. They said that they practiced Santeria and that they were hexing me. They called me a home-wrecker for threatening Trey’s marriage. The voices would attack me for hours, day and night. My care for my three children suffered tremendously during this time. I ultimately lost custody of my children to their father.

After my children went to go live with their father, there was nothing to tether me to reality, and so I went further on a downward spiral. I was haunted by angry voices and I started driving and even flying wherever the voices told me to go. I was trying to find Trey and escape the angry voices at the same time. In one episode, I drove to Arizona, without my purse, until I ran out of gas. I was stranded in Buckeye, Arizona with no money. A kind store owner allowed me to use his phone to call home for help. As soon as I called, my family rushed to help me. On different occasions, I flew to San Jose and New York. I was very confused and fearful. For four, terrifying months, I dodged my family and my psychiatrist who were trying to have me committed. After a few days of losing myself in New York, I returned home to find a police officer waiting for me. My father had filed a missing persons report on me. My family was relieved to see me and cancelled the missing persons report; however, my problems were far from over.

At night, I would grow even more fearful in our empty, family home. I called 911 five nights in three months. I drove to the police station to explain that people were hexing me. I wanted them to investigate my case. The officer at the police station told me that, “the Carlsbad Police Department does not believe in Santeria.” They asked me if I had a mental illness. I was very disappointed that they would not help me, in the way I wanted. It turns out the Carlsbad Police Department has a Psychiatric Emergency Response Team set up to handle situations like mine. After one 911 call too many, they sent me to a psychiatric hospital, where I stayed for three days on an involuntary hold. I was handcuffed and placed in the back of the squad car. It was so embarrassing. I was sent to the emergency room, while I waited for a spot at the psych ward to open. I was thoroughly drug tested and then admitted to the psych ward. One man in the hospital became enraged as he detoxed from drugs, attacking the staff and needing to be physically restrained. I was terrified. I attended daily therapy sessions in the hope that I would be released, as soon as possible.

As bleak as my stay was, the hospital accomplished one important feat: they placed me back on a medication regimen. I bounced around for a year trying to stabilize my medication. I needed to find a medication that worked for me, as my former antipsychotic did not cut it this time. I am happy to say that my new medication is helping me tremendously. I rarely have breakthrough symptoms, only under severe duress. I became proactive in my recovery, doing things I needed to do to stay healthy, like deleting Trey as a friend on Facebook. I blocked every negative person from Facebook, too. I don’t want the temptation to look at their pages and compare my life to theirs. Eventually, I started feeling good enough to see things from a different perspective.

After I was stable, I reconsidered my divorce. If I am taking my medication and focusing on my family, I know I can combat the temptation to ruminate about Trey. I reconciled with my husband, and my family is once again living under the same roof. I have my “actual” companion back and I can help care for my children. Stephen has a stabilizing influence on me. I am adjusting well. It feels good to be back with my family. I am grateful to my family, my therapist, and the Carlsbad Police Department for getting me the help I needed. I truly regret my misguided choice to go off my medication. I should have trusted my doctor’s diagnosis. I will never stop taking my antipsychotic again. My children were very young during this time. They briefly went into therapy to cope with our divorce. My older children do not forget my erratic behavior from that time, but they are doing much better now. I will always regret, and will never forget, what happened.

I want to stress, to anyone who has mental illness, not to go off their medication and never self-medicate with marijuana or non-psychiatric medications. To this day, I do not know what caused my schizoaffective disorder. Did drug use cause my schizoaffective disorder, or is it genetic? I don’t know, but I am just relieved that I have my symptoms more-or-less under control now. Thankfully, the voices have diminished in their frequency and intensity.

Stephen left me a note, while we were separated, that encouraged me to “focus on wellness.” I think that sums up recovery for me. Recovery means putting all my distractions aside and focusing on my wellbeing. Recovery entails learning from my past mistakes and not repeating them. Responsible spouses and parents also need to focus on their family unit and make them a priority. Taking care of your recovery and your family unit is a delicate balance. I want to live my life as the best role model to my children that I can be. I know that I am capable of caring for myself and my family, despite my mental illness. I am spiritually in a better place now. I feel like my mental, physical, and spiritual health is intertwined, so I am trying to surround myself by good people. I am trying hard to make good decisions. I see my psychiatrist regularly. I take my medication. I try to live a healthy lifestyle. I attend church regularly with my family. I hope that by putting my story out there, I can motivate others to put their wellness first, which, for those with a serious and persistent mental illness, means taking their psychiatric medications, first and foremost.

Read Danielle Flore’s book The Voices »

EDITOR IN CHIEF / EDITOR: Gabriel Nathan | DESIGN: Leah Alexandra Goldstein | PUBLISHER: Bud Clayman

See Related Recovery Stories: Mental Health First Person Essays, Schizoaffective Disorder, Schizophrenia