Coming Out As Schizoaffective

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Another person has messaged me asking for help,” I sighed. “Their husband has just been diagnosed with schizophrenia.”

My sister looked up from her cup of frozen yogurt. “Oh, that’s nice.”

“Yeah, but it gets exhausting sometimes. I’m not a doctor. I’m a writer. I’m glad my words help people and that they feel like they can reach out to me, but I have to put my self-care first. I write about my mental illness, but that doesn’t mean I have to constantly be advocating and helping people. It is not my job to educate others on mental illness. It is a passion and a life-goal, but everybody deserves a break.”

“Well, what do you expect?” My sister’s eyebrows drew together, her voice rising. “If you tell everyone online that you’re schizoaffective, then people are going to reach out to you!”

I winced at the word “schizoaffective,” my cheeks reddening as I became aware of the women sitting next to us outside the storefront.

“Please. Don’t... Don’t say that here.”

“What? You’re SO open about your diagnosis. You’re allowed to talk about it, but I’m not?”

Yes, I wanted to say. But I fell silent, grateful when she changed the subject.

My sister is only sixteen years old and, I was too flustered to have the conversation I needed to have with her. I am usually too shy to stand my ground. Even when I do, I can’t get the words out right. I am learning to stick up for myself, but it’s hard when I don’t know how to put my thoughts and feelings into words. Because of this, I push my anger down, letting it boil inside me until my fingers are pressing hard and fast on the computer keys:

Yes, I have schizoaffective disorder. It is a disorder characterized by symptoms of schizophrenia and a mood disorder.

Yes, I write about my mental illness online because it’s therapeutic after hiding my symptoms for years.

Yes, I am open about my diagnosis. I’ve made it one of my goals in life to fight stigma.

But here’s the thing:

I decide when and where to come out as schizoaffective. It is my choice and not yours.

I decide who I feel safe enough with to share that about my life. I decide that, not you.

Having such a stigmatized mental illness means that I don’t feel comfortable sharing my diagnosis with everyone. It means I won’t tell my boyfriend’s family no matter how much I love them. It means I won’t tell my classmates. I won’t tell my employers, even if I’m having an episode. Especially when the mentally ill are being used as the scapegoat for mass shootings in America.

The truth is don’t feel safe. I don’t feel welcome. And when I think I am safe, I am often wrong. For instance, at my last retail job, my boss kept telling me to “pay attention!” when I was making mistakes on the cash register. I decided that I was going to pull her aside and tell her that I have a mental illness. My mental illness affects my ability to focus, process spoken directions, and think clearly.

However, before I could muster up the courage, the assistant manager began to make fun of an interviewee that had just walked away. He seemed to have some type of mental illness.

“We are NOT hiring him!” she raised her eyebrows. “Somethin’ wrong with that boy!”

I pressed my lips together, silent. My hands were shaking and sweaty.

“Jenelle has something wrong with her, too!” my coworker laughed. “You ask her a question and she’ll just stare at you all wide-eyed!"

That was when it became clear to me that I was not welcome there.

As a person with schizoaffective disorder, I have to “come out” again and again and again. I usually don’t get the best reactions. Family members have accused me of seeking pity or attention when I am simply being open about my inner life. There are a lot of awkward silences. I am accustomed to the bad reactions, but I need to be ready for it. I need to prepare myself, to remind myself that I am strong and smart and so much more than a diagnosis. I do not like to be ambushed, to be “outed” as schizoaffective if I do not feel safe if I do not feel ready.

Please don’t “out” me. Let me share my diagnosis on my own terms.

Written by August Blair