I Am Living with Schizoaffective Disorder and I Will Not Be Silenced
#IAmStigmaFree because I share my story at Crisis Intervention Team Trainings, public speaking engagements and conferences. I’ve been on the Board of Directors for NAMI Pinellas County for a couple of years here in Florida and I teach Peer to Peer as a mentor. But before I found NAMI, I was very alone in a struggle that went on for half my life.
At the age of 12, I began to experience depression and some mild paranoia, which I would only recognize as such many years later. At 15, I had my first suicide attempt. At 16, I was regularly cutting myself because self-mutilation had become my dysfunctional coping mechanism, along with anorexia nervosa, for which I was hospitalized for weeks at age 17, when I weighed 83 pounds.
However, none of this was the worst of it. Crippling major depression and an eating disorder were, I would realize later, much easier for me to live with than the psychosis that followed. At 23, I became floridly psychotic, delusional and paranoid, with constant auditory, visual, tactile and olfactory hallucinations. I believed, at first, that I had been heinously abused as a child and blocked out the memories, but then I began to believe I was a mind control victim of the CIA. I thought there was a microchip implanted in my body, monitoring my whereabouts and that people were communicating with me constantly through secret “double speak”, hidden messages and via reading my mind and sending me thoughts from theirs. I thought people on TV and the radio were directly communicating with me, and was sure that I had a personal relationship with Anderson Cooper of CNN, who I had never met.
Simultaneously, my severe depression swung into mania and then back to depression again. Needless to say these symptoms and my horrendous anxiety destroyed my ability to function the way I previously had. I went from being an honors student in a community college who was about to transfer to Smith College on scholarship, to living in a homeless shelter and then to sleeping the back of my car with trash bags covering the windows so no one could spy on me. This was after I was ostracized by the majority of my family for my behavior, which they did not understand.
I had no friends, except for one former professor and some women I had met on the internet, and I ended up moving into a room in a condo owned by the ex-boyfriend of one of those women, where I lived for three years. I rarely left that room in three years, except to go into psychiatric hospitals.
Yet, I was still never correctly diagnosed. Unable to recognize psychosis, due to anosognosia, the condition of not knowing one is psychotic, I did not even know that I was seriously mentally ill. I thoroughly believed in all of my delusions. I believed, on varying days, that I was Jesus Christ, Anne Frank and Scientology founder L. Ron Hubbard reincarnated, because I had come to think that psychiatry was out to kill me and I found support in my idea that medication was harmful through reading Scientology books; therefore, I decided I was a Scientologist.
During these years, which went on from 1999-2005, I lived in three different homeless shelters in three different states, various motel rooms, a few rented rooms and small efficiency apartments and sometimes briefly in my mother’s house. I was basically a vagabond with nowhere to call home. I had no support system, almost no friends, since even most of my internet friends had decided to have nothing to do with me any longer, due to my illogical behavior and I was left to suffer alone.
I received no help after leaving hospitals, misdiagnosed as bipolar or dissociative, when in reality I was completely psychotic the entire time and no one knew that. I never followed up to receive psychiatric care or stay on medication. In this time period I had about eight suicide attempts, including one where I totaled my mother’s car while driving it alone at about 100 miles per hour at the top of the Sunshine Skyway Bridge, a popular place for suicides in St. Petersburg, Florida and trying to drive over the guardrail as the voices all around me where screaming at me to do. I was also victimized by criminals several times, due to my inability to protect myself and this relates to the fact that people with serious mental illnesses are far more likely to become the victims of violent crimes than we are to perpetrate them.
Finally in 2005, I almost ended my life with a loaded handgun, but was stopped by the police. To this day, I credit those law enforcement officers with saving my life, which is one of the reason I am committed to being part of the CIT program, here in Pinellas County, because I want to be the person who can explain to them what it is like to be that suicidal, psychotic woman they have to handcuff and put into the back of a squad car. Sometimes, when I tell them my story, they cry; every time, many of them thank me.
After that attempt in 2005, I was committed under the long-term Baker Act to a psychiatric hospital for six months, through a program called SRT, Short-Term Rehabilitation Treatment. That program saved me from the seven previous years of constant psychosis because I was forced to stay on antipsychotic medications for the entire time, and for the first time in so long, I got a glimpse of my sanity handed back to me, for which I will always be grateful. Unfortunately, Florida ranks 49th out of the 50 states in mental health funding, and a few years ago, the legislature did away with that SRT program, so nowadays, someone like me cannot be saved by the program that stopped me from dying or from any more prolonged suffering. I have written all of my legislatures about this.
I found NAMI in 2007 and I have been a member ever since. I have found support, caring, understanding, knowledge, sympathy and empathy from my NAMI Pinellas family, unlike what I ever found before I met them. In 2006, I began working part-time again and I still do today. I have now had the same employer for seven years, a public college. I also returned to college myself, and received my AA degree with honors in 2010. In 2016, I will finally receive my BA degree.
I am stigma free because I believe that what Audre Lorde said is true, “Your silence does not protect you,” and that what Adrienne Rich said is also true, “Lying is done with words and also with silence.”
I will no longer be silenced. It is time for increased funding for mental health care in this country, and in Florida particularly, increased awareness and increased openness about this topic which deserves no shame and should not be enshrouded in stigma. Brain disorders are not defaults of character. And I do not call myself schizoaffective. I call myself what I am: a person living with schizoaffective disorder.
Let others know that there is hope and understanding about mental health. Together, we can become stigma free. Take the pledge.