Learning to Cope with My Schizoaffective Disorder

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I was sleeping on a tile floor during a New England winter with very little heat and no blankets. I starved to the point where I lost too much weight. After all this chaos I was hospitalized at Portsmouth Regional Hospital where the staff diagnosed me with schizophrenia, specifically schizoaffective disorder.

During my first episode of schizoaffective disorder, I experienced psychosis to the point where I had difficulty speaking more than several words at a time. I had referential thinking and lost my ego boundary. Everything external and internal blended together.

I believed there was a telekinetic network and my thoughts were being disseminated to everyone in the world.

The meaning of this diagnosis was something I repudiated at first. I didn’t accept as an inherent part of who I was. At first it made me think I was weird and different than everyone else. I didn’t like feeling that I was separate from those who were healthy and “normal.” My self-perception at the time was that I was kind of a weird person, so hearing this diagnosis reinforced that notion.

As I grew older and out of the awkward stages of my early and mid-twenties, it became easier to separate myself from the illness. When I became more comfortable with who I was, I was able to think of my mental health condition as not one and the same as my personality. This new mindset allowed me to compartmentalize the diagnosis into a series of symptoms.

Another issue I faced was that I attributed everything — all that horror — that had happened in college to schizophrenia. I felt that if I disclosed the diagnosis, that would immediately reveal all the embarrassing moments I had experienced from my episodes; all the chaos, psychosis, and disorientation. I was also nervous about meeting new people. It’s strange to say, but I didn’t realize when first meeting new people that they didn’t already know all about my condition. I also assumed that everyone who had schizophrenia had exactly the same experience.

In later years I realized the only commonalities are some of the symptoms. Sufferers experience auditory and visual hallucinations, referential thinking, speech impairment, and psychosis. When I disclose my mental illness, it’s simply a series of symptoms that I’ve been dealing with. It’s the same as any other diagnosis.

The other issue I struggled with when diagnosed with schizoaffective disorder was the stigma surrounding the diagnosis. At first I actually imagined it might be cool, a label that set me apart. Maybe the idea came from watching too much TV.

After the dust cleared from my second episode, however, I realized this diagnosis was a huge problem for a number of reasons. I struggled to socialize and interact with new acquaintances. People would joke about mental health conditions, and it was difficult for me to cope with because I took it personally. Hearing people disparage those with mental illness was painful.

It hurt because it felt like they were talking about me. I also couldn’t stand up for myself because I worried my friends wouldn’t want to spend time with me if I disclosed my diagnosis or defended others with mental illness. The stigma against mental illness is still strong and I felt it acutely.

After disclosing my illness to about five or six friends, I realized that the good people in my life didn’t care about schizoaffective disorder diagnosis. Disclosing the illness actually strengthened some of my relationships — people knew the reasons I was socially awkward at times. They became more accepting. And the disclosure also acted as a useful test — who would actually want to be friends with someone who was so closed minded as to discriminate against those with mental health challenges?

As far as feeling that mental health stigma kept people from associating with the mentally ill, I realized this was more about my own insecurity, my own unhealthy or irregular thoughts and behaviors. Friends who know I have schizoaffective disorder are always tactful when they talk about mental health, and they come to me as a resource when they, or someone they know, is going through a tough time. I learned that most of the disparagement against those with mental illness came from a lack of education. It wasn’t necessarily even malicious.

My diagnosis of schizoaffective disorder is simply a statement of symptoms. These mental health issues have nothing to do with who I am. I like to say that if someone has a cold, this doesn’t mean they have a sick personality or they’re a bad person.

For the first several years of recovery I hated to think about the diagnosis because of all the symptoms I was suffering from. As I became healthier, however, I was more comfortable with the diagnosis because it wasn’t impacting my daily life. As I made progress with therapy, I gained control over the illness alleviated the fears I had initially. The progress made my symptoms more manageable and easier to talk about. I finally had control of my life.

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