My Experience with Schizoaffective Disorder (Ava)

I would like to welcome the newest member of our writing team, Ava Gaul. In her first post with us, she tells us her story of living with Schizoaffective Disorder, which is frequently misunderstood, even among psychiatrists. Thanks for sharing with us, Ava!

Trigger warning for description of psychotic hallucinations, mentions of drug addiction & alcoholism

Schizoaffective Disorder, a fusion between Bipolar Disorder and Schizophrenia, combines the symptoms of both.  I was diagnosed with it three years ago after a lifetime of Bipolar I with psychotic symptoms. I could say the results were shattering, but in a way the diagnosis was a relief: to have a name for the paranoia, the white vans following me whenever I left the house, an explanation for the voices, the dialogue constantly critiquing my actions.  The schizophrenic break came that terrifying summer after graduating from an MFA program with no prospects and huge debt, but perhaps I should begin at the beginning.

It started with a diagnosis of Bipolar I, when I was 18, a sophomore in a small liberal arts college where my psychosis and erratic promiscuity fairly well blended in.  The Student Health center provided me with an array of medications until I stabilized and was able to graduate with only one abortion, an STI, and the delusional conviction that I was going to become “a writer and an artist,” employable skills bedamned.

The manias I suffered at that time were sweeping and unstoppable, waking from weekends spent sleeping with a different guy each night, signing up for five classes and two jobs and who needs to cook or eat solid food anyway.   The depressions hit as well; I spent whole summers drinking until four am and then sleeping until four pm, lying listless until it got dark again.  That leaden, hopeless, bottomless feeling I couldn’t escape even with Welbutrin and Zoloft.

I decided to move to the big city, opening the door to grandiose mania, enhanced with my newfound cocaine addiction.  Working my way through the low-income clinics in an effort to stay medication-complaint, I found it almost impossible to get a psychiatrist who could address my issues or a consistent therapist. I was a vain, arrogant, self-absorbed little twat at that age, living out my late twenties with the brittle conviction that I could only date damaged people because I myself was mentally ill, and that cocaine was the answer to all of my social, creative, and weight control problems.

That trainwreck imploded on-schedule after five years, having maxed out my credit cards paying rent on a spendy studio apartment, as roommates don’t like living with mentally ill drug addicts.  I was broke, emaciated, picking grains of coke and speed out of my carpet.  I moved home.

A year of visits to the county mental health clinic for medication monitoring, and I moved away and was starting an MFA program in another city.  One other thing happened in that year: my psychiatrist started me on Ativan, a potent anti-anxiety medication that I loved with a sick and seething hunger and was later to become totally dependent on.  Let’s not mince.  I’m still addicted to Ativan.

While in graduate school, the first stirrings of the Schizoaffective Disorder began.  My program was highly competitive, and my bipolar promiscuity and egomaniacal qualities did not earn me friends.  The campus existed in a constant dull roar of voices, and out of those voices I would consistently hear my classmates talking about me, jeering, joking, saying derogatory things.  To this day I do not know how much of what I heard was a prodromal hallucination.

In my first year I was hospitalized due to a seizure with psychosis.  I saw Jesus beckoning from heaven and the Grim Reaper at the foot of my bed, clear and unmoving for hours and I screamed and screamed until they put me in the psych ward.  In four days I came out having made friends on the inside and lost them on the outside.

When I graduated I had a schizophrenic break. I had been prescribed Ativan in the last few months of school, which allowed for a pleasant first half of the month and shivering withdrawals in the latter half.  I was living with my deadbeat prostitute ex heroin-addict boyfriend, who beat me and threatened to kill me.  I applied for jobs but felt like I was drifting farther and farther from reality.  There, in my dirty, cockroach-ridden apartment, I began to have intense auditory hallucinations that I could not distinguish from actual voices.  I was convinced I was being watched and monitored by the neighbors through the floor length, sheer-curtained windows.

Realizing my illness had progressed to a point where recovery was impossible and a rapid downward spiral to institutionalization seemed inevitable, I applied for SSDI.  I was drinking two bottles of wine a day along with my medication, this time Tegretol, Abilify, Ativan, Lexapro.  I wasn’t eating.  When I went in to sign the papers I had blossoming cold sores on my lips and looked like a skeleton.

In six months the SSDI went through.  I spent a lot of time on support group websites, listening always to the voices, watching the billows of colors on the walls, the fairies running along the insides of the walls.  I tried to come to terms with the fact that my life was over, that I was never going to be able to do anything ever again, that my light was going out and soon it would be dark.

Then things began to change. My boyfriend assaulted me at a party and we broke up.  He left town.  I started dating a young woman who lived nearby. With her I felt safe.  She tried to understand my psychosis. Even though the first times we spent together I was paranoid and hallucinating she persisted in seeing me.  We moved in together in a different part of town, closer to mutual friends, and that move triggered a change of psychiatrist that was to have dramatic effects upon my remission.

Unlike my old psychiatrist, who kept prescribing the same drugs that didn’t work, my new psychiatrist made an effort to listen to my symptoms and treat them.  Slowly, gradually, over a period of three years, the voices dulled to a whisper.  With better medication, I was able to differentiate between delusional night terrors and the inevitable dawn. I began to move back into normal society.  I took a few classes and did some volunteer work.  I began to attend art events and readings. I began to perform and publish intermittently.

Breaking out of the isolation and talking to people who did not know about my illness was and still is a problem for me.  In small talk, people always want to know what you do.  I’m on Disability.  Or I could say I’m a writer but that’s obnoxious and is inevitably followed with “Bet that doesn’t pay the bills.” Or “Oh, do you write for TV?” or some sort of prying question, and once it comes out that I’m on Disability, as I’m able-bodied I watch the gears turn behind their eyes and then “What, are you like scamming them or something?  Where’s your wheelchair?”   Saying I’m schizoaffective is usually followed by a long silence or a quick departure.  Not everyone I speak with is this tactless, but the shaming is difficult and pervasive.

Thankfully, I have found a small space where I can exist.  I have a circle of loyal friends. I have my partner, who became my wife a year ago. I still hear voices and have delusions, I don’t think this will ever go away, but they are quieter, now, a whisper, as long as I am medicated.  With the shift from bipolar to schizoaffective, the mania and depression have lessened, with psychosis more prominent.  I become hypomanic fairly often, but full-blown mania of the sort I used to suffer from is rare.  I am still very dependent on Ativan, as well as Wellbutrin, Zoloft, Fanapt, and Topamax.  Without this handful I will fall apart in a matter of days.

My peace is tenuous, but I am thankful for it.