Fear of Developing Schizoaffective Disorder

In some families, it is normal to worry about developing schizoaffective disorder. When my uncle first got sick with schizophrenia and with bipolar disorder (which was then called manic depression) in the late 1950s, his little sister, my mother, was afraid she would get sick, too. She was 12 years younger than him. Similarly, when I got sick with schizoaffective disorder, bipolar type, my brother, Billy, only two-and-a-half years younger than me, was afraid he’d get sick. Here is my story of living with schizoaffective disorder and knowing it is an illness that other people are afraid to have.

It's Serious If You Develop Schizoaffective Disorder

Yes, I understand people are afraid of having any serious illness. My uncle was originally diagnosed with schizophrenia and manic depression and then diagnosed late in life as having schizoaffective disorder, the illness I have, though his symptoms were much more disruptive. He passed away last year. Schizoaffective disorder is a very serious illness. I take a lot of medication for my illness, and I know my uncle did, too, but had first gotten ill when treatments were much less effective.

Because of Uncle Bud, I grew up being afraid that I would develop schizoaffective disorder. Sometimes I wonder if that’s what caused me to have the illness; but I know that’s magical thinking, which is a psychiatric way of saying I’m being superstitious.

Uncle Bud was very sick for the rest of his life after his first psychotic episode. I am not as sick as he was. But when I was in the middle of my first and only psychotic episode, I was extremely hallucinatory. I thought everyone from a family friend to George Harrison to the FBI was following me.

Now, the thing that’s tricky here is that--while I remember what I was thinking during my psychotic episode--I don’t remember what I was doing. So I don’t remember exactly how I was acting that made Billy so afraid. He knew I needed to move back home to the Midwest from a posh college out east.

I had started taking an antipsychotic during my episode, and it finally kicked in. With horror, I realized that no one had been following me, that it had all been in my mind. I also realized I'd been hearing voices. I thought I’d have to live in an assisted care home as Uncle Bud did for the rest of my life.

Even Though I Developed Schizoaffective Disorder, My Life Is Good

But, I didn’t. I got a degree from The School of the Art Institute of Chicago four years after my episode, and then I got my master’s degree in photography from Columbia College Chicago. I have a word of advice, though: don’t go through lots of medication changes during graduate school. It made my behavior erratic, so I missed out on making some connections with colleagues. This has hurt me professionally.

Yet soon after I got my master’s degree, I fell in love and got married to my husband, Tom. We live just outside Chicago.

I was afraid I’d get schizoaffective disorder, and then I did. But, as a beloved aunt kept telling me, I’ve made a very nice life for myself. Sure, I have limitations. I can’t go to protests for causes I deeply support, because my schizoaffective brain can’t handle the noise and cacophony. I feel bad every time a protest comes up that I would like to go to. But, I just can’t go. What I can do is vote, sign petitions, make phone calls, and donate if I have extra money.

Is my life perfect? No, but whose is? I am so lucky to have Tom. Maybe I wouldn’t have met him if I didn’t have schizoaffective disorder. Does that make it worth it? I have a good life, even with schizoaffective disorder. Of course, I would rather not have the illness. But I do, and I’m making the best of it.

How did you feel about developing schizoaffective disorder or schizophrenia? Share your thoughts in the comments.