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My Experience With Schizoaffective Disorder Diagnosis, Hallucinations and Delusions

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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 741741.

Let’s first look at some definitions and information about schizoaffective disorder. This disorder is characterized by having continuous psychotic illness along with intermittent mood episodes. So what does that mean? Basically, it means that someone with schizoaffective experiences schizophrenia and a mood disorder at the same time.

The mood disorder could be major depressive episodes or manic and depressive episodes, which is called bipolar disorder. To add to the confusion of this disorder, there are three types of bipolar episodes someone can experience. Both type 1 and type 2 experience major depressive episodes but type 2 experiences hypomania, which is a lesser form of what I call “full-blown” mania from type 1 bipolar disorder. Also, you could experience mixed episodes where both symptoms of both sides are present.

I have schizoaffective bipolar 1 disorder. This is often misdiagnosed because a person could have a major depressive episode with psychotic features or bipolar disorder with psychotic features, which is where their mood often controls their psychosis.

The best way I can explain it is that my hallucinations and delusions — which have to be present for diagnosis — continue regardless of my mood episode. The theme of those hallucinations and delusions continue throughout my mood disorders. When I was first seen and evaluated for a mental illness, I was diagnosed with schizoaffective disorder, but because it is rare the overseeing psychologist bumped it down to bipolar 1 with psychotic features and stated that to properly diagnose schizoaffective disorder, I need to be monitored more. That unfortunately made it more difficult to treat. The goal of my treatment team turned from treating both schizophrenia and bipolar to treating bipolar only, thinking the psychotic features would go away with the stabilization of moods. This didn’t happen. I continued to get worse hallucinations and delusions as my mood attempted to stable out. A year and half and a different doctor later, I was finally properly diagnosed.

It all started to make sense to me, why my psychosis wouldn’t get any better with the focus being solely on mood stabilization. This new diagnosis just felt right. I fit all the diagnostic criteria and was, as one doctor told me, “textbook.” The way I explain my moods is that, during mania, I am so high I equate it to flying a plane, then jumping out of the plane. With the wind blowing in your hair and the huge rush of adrenaline. Then realizing, when you’re getting closer to the ground, you don’t have a parachute and you’re getting closer and closer, and all of a sudden you crash right into depression. You are devastated, you can’t move, you can’t do anything. You are completely crushed. Now, add hallucinations, delusions and paranoia on top of that.

My hallucinations consist of hearing and seeing things that are not there. It is scary at times. There was once I could hear someone breaking into my house but there was no one there. I was standing at the door, looking outside, and hearing someone breaking in at the same time. Another time is when I would see a black cat roaming around my house. Seems innocent right? Not when you don’t own a black cat and you can’t figure out if this is real or not. The only way I knew it wasn’t real was because my dog wasn’t reacting to the cat.

My delusions consist mostly of believing outrageous conspiracy theories. For instance, about 10 years ago, I believed there were mass graves being built behind my local zoo. I checked on those mass graves three times a day for months. A voice was telling me it was my responsibility to watch them and when the time comes to tell people. So, I held it a secret and listened to the voice. Every day, the voice would tell me not yet, it’s not time yet. I thankfully was able to eventually recognize something wasn’t right, and I had been deceived by my psychosis, before I went around town telling people about these mass graves.

Another fixation I have is the hallucinations of bugs. I see and feel bugs that are not there. It is awful; I am constantly wondering if the bug I see is real or is it fake. I also experience the darker side of voices where I hear voices to kill myself, that I’m worthless, that no one loves me, and that I’ll die because of this disorder by suicide. It is terrifying to hear those voices all day long. You begin to believe them. The best way I can explain voices is that it is a voice outside of your own mind’s dialog. It literally feels like someone is standing by your side, talking to you. My only saving grace is therapy and close friends who consistently combat those lies with the truth.

Living with a mood disorder such as bipolar disorder is hard enough. Living with a combination of schizophrenia and a mood disorder can be unbearable at times; I know. Whether you experience highs that are too high, lows that are too low, or both like me, it can be challenging to do the simplest of things. I think one of the most challenging things is building relationships. Hallucinations, delusions, and paranoia tell you people are unsafe — that once people know you have the disorder, they will leave. I felt like I constantly had to hide. I had to hide every part of the disorder from people. That led to me isolating when what I really needed were friends who loved me and that could combat the lies my psychosis told me.

If you struggle with any of the symptoms I talked about, or if you struggle with all of them like me, know you are not alone. There are others who can relate. You are not the only one. You don’t have to live in isolation. You don’t have to live afraid of getting close to anyone. It is OK to reach out and be your authentic self, but I also understand the pain of being rejected. Don’t let that pain keep you from people. Eventually, there will be someone who loves and cares for you just the way you are.

Photo by Pawel Szvmanski on Unsplash

Originally published: October 2, 2020
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