Accepting A Diagnosis I’d Never Heard Of

It was spring. And I was sitting across from a curt Russian lady.

“Schizoaffective Disorder.”

That’s what the psychiatrist (and many others after her) would say to me in her office. I had never heard of it. Many people haven’t. My parents were at their wit’s end. I had lost hope. I didn’t care anymore. This new term she had handed to me was useless, I thought. After five years of medication and therapy for depression, OCD, bipolar disorder, and social anxiety disorder, at 20 years old, this new diagnosis didn’t seem to change anything. No one seemed to know what they were talking about, what to do with me. I often considered that maybe I was just a wimp, that everybody felt the way I did and just had a better way to cover it up, to cope.

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One of the letters I received from family, while I was in the hospital.

It wasn’t until I got out of the hospital that I decided to research my new diagnosis. Confined inside the psychiatric hospital, I had met people like me. I finally saw my unique and personal symptoms in other people. They saw things, too. They had delusions, too. I remember a friend of mine in the hospital pacing the halls at night. He was usually Mr. Smooth, flirting with everyone, cracking jokes. But as I walked toward him, he looked up and I saw a strange glimmer in his eyes. Something had changed. He was different. He grabbed hold of my arm, too hard. “There are bombs in the Pacific Ocean. Bombs. There are bombs in the Pacific Ocean. God told me!” He repeated variations of these sentences over and over. He was trying to warn me. He had a message from God. God was talking to him. God was warning us.

I pulled away from my friend, finally. He was scaring me. He began pacing again, yelling about the bombs. It was the first time I had witnessed a psychotic episode in someone else. My friend didn’t seem to be in there anymore. It was terrifying. It was sad. I spoke with the nurses, and then walked back to my room and realized for the first time that I finally understood what my family and friends felt like when I had an episode. When I woke up in my sister’s bed, screaming and crying about a dead girl spying on me through the windows, waiting to break into the house and kill me when no one was looking… my sister must have felt similar to how I felt now. I pulled the blanket under my chin and curled up in my hospital bed. My roommate was snoring softly. I stared at the door to our room for as long as I could until I fell asleep. I was afraid my friend was going to sneak in to rape and kill me. I had informed the nurses of this fear before I went to my room. They reassured me. They said they were keeping an eye on him. Etcetera. They didn’t understand that he was evil. That he was the devil, the antichrist. I didn’t know it at the time because I thought my fears were rational but his episode had triggered me. So badly that I didn’t speak to him for the rest of my hospital stay. I couldn’t get past my delusions to see my friend again.

At the library, that summer after I was released from the hospital, I couldn’t find anything specifically on schizoaffective disorder, so I checked out a few books on schizophrenia and bipolar Disorder. I remember feeling like a freak, carrying “Schizophrenia for Dummies” around with me wherever I went. Sometimes I would hide it, and sometimes I would leave it on the table for everyone to see at family gatherings. Everyone knew, but we didn’t talk about it openly, only behind closed doors one-on-one, as if to contain my illness in some way. I was ricocheting between one extreme (not talking about it at all) and another (talking about it constantly, watching people clam up and get uncomfortable as I described my hallucinations). I remember one instance, specifically, when I had “Schizophrenia for Dummies” in my lap. Someone in the family saw it and decided to inform me that I didn’t have schizophrenia. I blushed deeply. I was humiliated. Did they think I thought having schizophrenia was cool? That I wanted to be apart of some exclusive club, but didn’t meet the requirements?

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“What you have is different,” they said, or something along those lines. I wanted to open my mouth, but I didn’t. I was too shocked. They had ripped one of two terms away from me that I was clinging on to, desperately hoping to squeeze some sort of hope or truth or meaning from. I was confused and angry. I wanted to tell them that there weren’t any books on schizoaffective disorder, so I had to settle for this one. I felt like crying. I’d already been diagnosed with bipolar disorder the previous fall and read everything I could on that, so I was more interested in my schizophrenic symptoms. I was doing all I could to learn about my new diagnosis, this sort of dangerous, unreliable bridge between two distinct illnesses. Was I a freak or not? Was I some sort of half-freak? Was I a genius? Just as I was starting to identify with two terms that helped me understand my symptoms, let me know what I was up against, what I needed help with, etc, the chair was yanked out from under me, and I fell on my butt. I wanted to shout,

“Just tell me what is wrong with me!”

But I didn’t shout. I was silent. And I believed them. I thought I didn’t have schizophrenia. Right then, and right there, my psychotic symptoms broke free from my grasp and became incomprehensible once again. Labels aren’t usually good things, but being able to look up my symptoms and identify them is a huge advantage. Knowing I struggle with paranoia, hallucinations, and delusions enables me to be one step ahead of the game. Scary movie about spiders? Can’t watch it unless I want to be followed by spiders the size of cars and eaten by them in my sleep. I know my triggers better when I know what my symptoms are. I know ME better when I know what my symptoms are because I know where they end, and I begin.

Fast forward a little over a year later, and here I am, finally accepting that I DO have schizophrenia. That, and bipolar disorder. I have two different illnesses. For a while, it was hard to find anything specifically about schizoaffective disorder, so I just researched schizophrenia and bipolar disorder separately. Lately, I’ve been finding more and more material about my illness, though. So, let me clear things up: People who suffer from schizoaffective disorder suffer from schizophrenia and a mood disorder, either depression or bipolar disorder. I have bipolar-type schizoaffective disorder, meaning I suffer from manic episodes, depression, and schizophrenia. On the other hand, people who have unipolar schizoaffective disorder suffer from depression and schizophrenia. Make sense? Maybe this link will clear things up.

Remember that everyone is different. Everyone is unique. Everyone is special and deserves love. Don’t try to tell someone what they do or do not struggle with. If you are curious, ask. Politely. Respect their decision to answer you or not. Above all, be respectful. We are not zoo animals. Our life experiences aren’t for you to marvel at or ridicule. The best website to use is nami.org if you want to learn more about your illness or that of someone you know. There are even programs for family members of those suffering from a mental illness to learn more. They can be found here. Before you open your mouth to tell your acquaintance, friend, or family member what you think they do or do not struggle with, try educating yourself.


This post appeared on The Mighty and Niume.

4 comments

  1. This is a brave and beautiful blog on mental health. I’m so sorry you for the way you’ve been treated — even by well-meaning people.

    I have Dissociative Identity Disorder so I understand in my own way about being triggered or simply not making any sense to people. It’s wonderful that you are getting help and talking about it. People understanding mental illness is an important part of being able to get the support we all need.

    Thanks for posting this.

    Liked by 1 person

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