The Long Journey to Schizoaffective Disorder Diagnosis

Editor’s note: If you experience suicidal thoughts, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741-741.

Summer lightning storms in Maine are gray and dark and loud. They are, as most people know, created by the collision of warm and cold air in the upper atmosphere. The trees, unrestrained, whip back and forth. By morning tree limbs will have broken from their trunks. The rivers are also affected, swelling up like animals which feigned themselves larger. Another bout of thunder that’s drawn out from a slow and sweet summer sky. Lightning. My orange cat curled at the foot of the bed, his head resting on my feet; my gray one nervously pressing her face into her brother’s apricot coat.

I’m torn between tired and fascinated, my nighttime antipsychotic dose leaving my eyelids heavy. If I close my eyes I’m surely done. I fight sleep though because I love the way the lightning fills the room with light and then leaves it dark again. I feel my medication cloying at the back of my mind: “Sleep, sleep, sleep,” it says.

I can remember a time when I could’ve stayed up all night long. I can remember a different me. I can remember standing quietly in my hot, post-shower bathroom. Hands grasping the sides of the porcelain sink, thinking, “What’s wrong with me? These voices, these thoughts, these scars along my arms? What is all this noise in my head about?” I remember when I started pulling out my own hair. But oh no, soon people would see! So, logically I shaved my entire head and blamed it on too much hair dye. People said, “Wow you’re so brave you shaved your head!” I wanted to say, “No no, it’s not like that at all!” But saying it was in good fun was, by nature, it’s own diversion.

I still can remember how the paranoia began, wriggling into the back of my mind like a fat parasite, planting disquieting delusions as if I were some dirty garden to just be filled up willy nilly. The delusions worsened. I rode the swell of mania. I checked myself into the hospitals and fought my own denied release. I emptied my bank account and couldn’t remember what I used the money for. Lost days and days worth of time. Took too much of my medication and then didn’t take any at all. I can still remember how, when I started getting sick, I expected I was dying — that after all the MRIs I expected they were going to say, “OK, you’ve got a tumor in your brain,” and the hallucinations were going to have a reason. The monsters I saw and the voices and God and the Devil and my antisocial behavior weren’t going to be my fault. I was going to be allowed to die. I was going to be able to fix all the relationships I’d ruined.

Instead, there was nothing obviously wrong with my body, even though I was sick. My brain looked more or less normal. So the next thing they tried was an EEG. And I thought, “It’s OK, I’m going to have epilepsy.” Then the EEG came back normal too. All I heard was, “You’re normal. You’re normal. You’re healthy.”

This and that test came back normal. Spinal taps, neurological exams. And there I was, watching the list of possibilities becoming more and more narrow. Chronic psychosis quickly becoming the only possibility.

After four years of tests, imaging and hospitals, my doctors said, “You’ve got schizophrenia.” I remember how ungodly still I sat before this last doctor. In fact, only part of me that reacted were my hands. I wrung them out like they were rags made of wet fabric. You know the same hard way you squeeze all the water out of the dishcloth before you call quits on the dishes? That’s how I felt. About ready to call it quits.

I knew I had it. I had known for years. The boa of psychosis had become a familiar tightness in my head. I thought it was an awful waste of time and suffering to take so long to diagnose me. By this point, I was homeless and had ruined the majority of relationships with family. I’d tried to kill myself. I had been mistreated in hospitals and in school. I’d been through so much and after all this time I’d finally figured out what it was.

I can still remember sitting in that stiff chair asking, “What comes next?”

Her answer wasn’t important. She didn’t know what came next, not really. She wasn’t schizophrenic. She was just the messenger and I was just a piece of news. The same as the other schizophrenics she’d diagnosed.

“A group home maybe…”

I had a sob caught at the back of my throat. I thought maybe if it had been an infection or anything else I wouldn’t have been alone for this. Maybe I wouldn’t have been homeless, maybe I’d be happy, even if I was terrified. A group home… a group home…? 

“Medication…” she said.

I left the appointment feeling that my schizophrenia was very much my own fault. Medication.  A group home… what comes next? What comes next? What comes next? 

As it turned out a blur of medication was what came next. An almost max dose of antipsychotic medication. More hospitals. But illness is different now because nobody listens to me anymore. They just look at me and I know they are all calling me “crazy.” I’m now a schizophrenic after all, even though in reality, I’m still the same nervous person. Still quiet. Still reserved. I still have the same set of symptoms that doctors were once rushing to treat, only now every symptom is blamed on schizophrenia. Now they just dismiss me by stabbing shots of medication into my upper leg, because now the antipsychotic isn’t always enough. Now instead of praising me for keeping up with my schoolwork despite being sick, I am asked to leave. I’m unsafe now. Maladjusted. Now I’m considered the violent psychopath America fears. I’m a statistic. A Halloween costume. A movie villain. I’m not a person anymore. I’m just a thing that needs to be medicated so that nobody has to see or hear me. I’m the thing people agree needs to be locked up, hidden away. I’m a thing now. And people say, “Oh God, keep that thing under control. Keep it medicated. Keep it away… oh God, oh God.”

At my worst, I could hear the thoughts of people around me. Scary thoughts, painful thoughts which induced incredible paranoia. Spies following me wherever I went. I was sure I was being abducted by aliens that wanted to control my mind. I suspected some huge conspiracy I couldn’t name. I tore apart my dorm single in the grip of a desperate search for hidden cameras I was convinced had been planted in there to spy on me. I cried. I felt alone. I was scared of myself. Scared I couldn’t resolve this unraveling life of mine. I don’t need help, I need help, please God someone help me. Don’t touch me! There’s nothing wrong with me! Something’s wrong with me! Oh God, what’s wrong with me!? 

My thoughts were so fast I didn’t have time to think them. I began drowning in the riptide of depressive episodes. Made attempts on my own life. My medication left my brain feeling full of sand. I couldn’t think straight.

The hardest parts though were the fleeting moments of introspection. In these moments, I found myself aware I was losing this battle. So for me, schizophrenia soon became a degenerative experience. That’s the difference between schizophrenia and other illnesses. I feel that schizophrenia is a disease we are expected to fight alone.

A clap of thunder suddenly, much louder than the rest, roused me from my thoughts.

My cat is woken up too. He stretches his way up my legs and midsection, leaving his sister sleeping by my feet. He purrs onto my chest and collapses in a sleepy heap of orange creamsicle fur. I shook off the dust of late night thought-induced depression, and I quietly remind myself everything is OK. I remind myself of how it’s been over a year since a hospital admittance. About how my medications are working. I tell myself that my illness is even more pinned down now. At my last doctor’s appointment, my mood disorders and psychosis finally culminated into a schizoaffective bipolar type diagnosis. After nearly five years of being undiagnosed (or misdiagnosed) I know exactly what I’ve got. My illness is now squirming like an insect pinned down under a microscope. So I’m able to learn more and more about this illness every day. Able to remind myself everything is OK. That I am OK. That I am not alone. That things really do get better. I press my thin lips together and push the voices back, focusing on the quiet breathing of my cats. Then on the breathing of my husband, curled fully into some dream beside me. His face pressed into the pillow. I focus on his breathing and then, finally my own.

My cat lets out a long sigh and some of my anxiety is dismissed. I watch as my cat gives into sleep. And after I close my eyes, I can’t help but follow suit, my brain giving way to a medication-induced sleep. One more clap of thunder and I’m nearly there. Schizoaffective disorder makes me so very tired and, without warning, manic again. I’m always trying to sleep. One second a great lumbering, hibernating bear, the next a hummingbird with two heartbeats and a mouth full of language.

Schizoaffective disorder is a combination of both schizophrenia (a psychotic disorder) and a mood disorder (ie. depression or bipolar). In my case, I have schizoaffective bipolar type 1 (both schizophrenia and bipolar type 1).

Schizoaffective disorder affects 0.3% of the population and is very serious if not treated. It is treatable, however, handled in much the same way schizophrenia is treated (with antipsychotics) and the way bipolar is treated (with mood stabilizers and/or antidepressants). In combination with psychothreapy and education management, people with schizoaffective disorder — myself included — can lead functioning and independent lives, although lifelong treatment and support are needed for success.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741. Head here for a list of crisis centers around the world.

If you or a loved one is affected by body-focused repetitive behaviors, you can find resources at The TLC Foundation for Body-Focused Repetitive Behaviors.

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Thinkstock illustration via kevron2001