Recovery,  Schizoaffective Disorder,  Schizophrenia

Schizophrenia – Taking the power from the word

The words "You Got This" written in white chalk on black asphalt with brown leaves sprinkled on top

For a very long time, I lived in a cloud of shame and fear brought on by my diagnosis of schizoaffective disorder. I made my parents promise not to share it with my extended family. For a bit, I even kept my diagnosis from my brother, who was away at college. By the end of the first year with my disorder, less than 20 people knew, including my parents and doctors. I was so afraid of the power of the word schizophrenia.

Fighting the fear

I was afraid that the word alone would make people see me in a different light. Could it wash away years of friendship? What did this word mean for my future? Would everyone leave me because they thought less of me? Was my life as I knew it over? With no one with a similar diagnosis to talk to, I didn’t know what to expect. I thought about what little I knew – some of it the stereotype, but also psychological facts. I went through all the worst-case scenarios in my head. And then decided that I wouldn’t be one of them. It was more a refusal to accept than a valiant decision. I didn’t believe in myself, but I gave myself no option other than to try.

Thankfully, those I told were supportive, but I still kept my diagnosis a secret from most. I kind of tried to pretend like it wasn’t there at all outside of keeping up with treatment. It wasn’t until college that I began feeling comfortable with my diagnosis and became less afraid of it. I was still a little bitter because I felt like it robbed me of a normal young adult life, but I began to see that I could still follow my dreams and be successful. I just had more hurdles to clear than others.

Facing the fear head on

Then I had the opportunity to speak about my illness at an event in college. In front of around 50 people, I told my story. A weight was lifted off of my shoulders because it wasn’t a secret anymore. On top of that, the response was overwhelmingly positive. My fears hadn’t come true.

That was when I learned that telling my story could help others – both those with and without mental illnesses. People said they felt less alone and that they now understood what schizophrenia is really like. Every time I spoke about it, I chipped away at the stigma around schizophrenia.

But it returned

After college, it became a secret again and the fear of the word started to creep back in. I failed to get two blogs about schizophrenia off the ground because the fear stopped me. I needed my job. What if they found out and fired me? While it has yet to happen to me, that does still happen because, for many, schizophrenia is still a scary word.

At that point, I was still keeping it from most people who knew me before my diagnosis, as well as my extended family. I was just so afraid of judgment. But keeping it a secret made me anxious, and how could I help others overcome the shame and fear if I couldn’t do it myself? Taking the plunge, I posted my story on facebook. I received numerous positive responses, with many people saying it changed their views for the better. I felt respected and understood, and the fear and shame slipped away again.

Taking the power

I would be lying if I said I don’t feel the shame occasionally, and I face a little bit of fear with every talk and every post. But I continue to become more confident in myself and my abilities, and I’m not afraid of the word schizophrenia anymore. I’ve learned that I can take the power from the word by accepting myself and being open about it – shame and fear and all. And by speaking and writing about what schizoaffective disorder and schizophrenia are truly like, I can help change people’s view on schizophrenia and what’s possible with a schizophrenia diagnosis. So I take every opportunity to tear apart people’s preconceived notions and the powerful stigma around the word schizophrenia.

You can help take the power and the fear away from the word schizophrenia too. If you have schizophrenia, speak up when you can and don’t let schizophrenia make you think you are anything less than someone without it. For those with loved ones with schizophrenia or who are just reading this to learn more, continue to educate yourself. Spread what you have learned. And treat people with schizophrenia with the same respect and understanding that you give anyone else. No one should fear the word schizophrenia. It’s not a death sentence, a marker for violence, a lower level of humanity, or a reason to discriminate. Schizophrenia is a diagnosis used to guide the treatment of a disease. It is nothing more.



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