What Nobody Told Me About Schizophrenia

When I was diagnosed with schizoaffective disorder at 17, all I really knew about schizophrenia and schizoaffective disorder were stories from movies, the 30 minutes we talked about it in my high school psychology class and the stereotype. I didn’t realize how much I didn’t know until it happened to me.

Nobody told me about the cognitive issues.

I was completely unprepared for the cognitive deficits that go along with schizophrenia and schizoaffective disorder. As an honor student who always got high grades without studying much, if at all, it was like a slap across my face. I didn’t understand why I had trouble memorizing things. I didn’t know how to fix the fact that I could read the same line in a book over and over again and still not fully process it. Up until that point, my academic achievements were a point of pride. I felt like I had been robbed.

Nobody told me about the medication side effects. 

Outside of birth control, I had never taken medications long-term before the onset of my illness. The weight gain felt out of control. Even at the height of track and field season, when I was running and doing drills and working out five or six days a week, I still gained weight from the meds. And on top of that there was akathisia, an insatiable internal restlessness. I would kick my feet trying to get it out, but nothing helped. The fine tremor I developed in my hands was the least of my worries.

Nobody told me about the shame.

I had struggled with depression and obsessive-compulsive disorder for many years, but schizoaffective disorder drastically changed the way I saw myself. I feared stigma, thinking my friends would abandon me and that people would treat me poorly. But I was also stigmatizing myself. I felt worthless. I felt different. I felt like a lesser person, all because of a diagnosis. The shame followed me for years.

But nobody told me I could continue living my life.

In college, I searched for a story of another student who had entered Northwestern University with schizophrenia and graduated on time. I wanted hope. With no example to be found, I had to blaze my own path. I wasn’t sure if I could do it, but after four years, I crossed the stage to receive my bachelor’s degree in psychology. I held down jobs, built strong relationships and have been contemplating graduate school for some time. My life changed after my diagnosis, but it did not stop.

Nobody told me that I could be successful with schizoaffective disorder.

I’m no Elyn Saks or John Nash, but I’ve achieved things I never thought I could after my diagnosis. I completed an ambitious psychology honors thesis in my senior year of college. I was co-president of a club that helped increase awareness, open an honest dialog about mental health on campus and even helped secure a grant for additional mental health services on campus. I’ve got a job I like and options in my future. Schizoaffective disorder can create obstacles, but it does not limit me.

Nobody told me I could be proud of myself.

I had to fight for my grades, but I got my degree with a good GPA. I’ve done all the things I never thought I would be able to do because of my diagnosis. And every time someone tells me that my writing or speaking has changed their mind about schizophrenia or helped them understand or helped them feel less alone, I am reminded I can help change the lives of others like me, and I am proud of that. The stigma still gets me sometimes, but schizoaffective disorder did not change my value as a person.

Nobody told me, so I am telling you.

It’s an experience no one can be fully prepared for. There are more symptoms than people realize. There are side effects to medications that can be difficult to deal with, but there are things that can be done to counteract or minimize them. It is normal to struggle with shame after such a stigmatizing diagnosis, but people with schizophrenia are no less human or valuable than anyone else. This diagnosis doesn’t have to be the end. People can do more than survive schizophrenia. They can thrive.

By breaking down the stigma, we can make the world a more accepting and understanding place for those with schizophrenia or other mental illnesses. Schizophrenia can present challenges, but it is possible to be successful. It is possible to live a fulfilling life. And people with schizophrenia can and should be proud of themselves for what they have overcome and what they’ve achieved. There will be obstacles, and routes may change, but despite the stereotype, there are no limits on what people with schizophrenia can do with their lives.