A Consumer Perspective: The Power of a Diagnosis

“I want to rule out schizoaffective disorder,” said the woman sitting before me.  She wore a light tan suit with a flowery top underneath. She was the first doctor I’d seen since I’d been hospitalized who seemed to know what she was talking about.

“It’s a serious diagnosis,” the doctor said, “but don’t believe everything you read on the internet about it,” she continued, smiling, almost as if she was giving me directions. When I had first been hospitalized, four years before, and been diagnosed with depression with psychotic features, I had found it comforting to go online and read about my condition after I was released. What I experienced was basically what the websites described: sad and stressed to paranoid and psychotic in a matter of days. It made me feel good to know there was a name and an explanation to what had happened to me.  But with “depression with psychotic features,” the psychotic symptoms are supposed to go away when the depression does. Now, the depression was gone, but the whispering was still there. Sometimes it was stronger.  Sometimes it would seem like it had gone away, but it always came back. It was like people talking behind me in the movie theatre, but when I turned, nobody was there.
I came home and googled “schizoaffective disorder.” It said people with this diagnosis are often single, unemployed, and lived in poverty. I reported across the living room to my husband, who shrugged. “Maybe your case is mild,” he said.
“Or maybe,” I said, “the fact that I’m employed and not single and not living in poverty is a testament to how high functioning I am.”  I was trying to come to terms with it. It was a subset of schizophrenia.  What did that mean?  I thought of how my mom said she always thought there was something wrong with me — smelling my pee when I was toddler because she didn’t think I smiled enough.

“A diagnosis is just a name so they know how to treat you,” my husband said, but to me the diagnosis meant more. Did it mean I wasn’t a normal member of society?  Did it mean I couldn’t do all the things I had once thought myself capable of?  I wasn’t sure. “Having a name for it doesn’t make you sicker than you are,” my husband continued.  He was right, but this time, having a name for it made me feel worse. It made me feel like I really was crazy.
Even my social worker had said, “you don’t have to tell anyone,” but that’s what makes mental illness unlike any other illness.  Mental health professionals often compare mental illness to diabetes, but would I have been worried about telling my boss I had to miss work from diabetes?  That’s where the comparison doesn’t really hold up. I still struggle with the diagnosis, even though logically I know it’s just a name, so they know how to treat me, like my husband said.  It also, in many ways, is part of who I am, who I’ve become. I deal with the symptoms that make up that label every single day.  How can it not be part of who I am? It’s the reason I take the pills I do that make me weigh so much.  It’s the reason I had trouble at work and didn’t get that promotion. And it’s just a label? I guess I’m still trying to get used to it — because I can’t ever remember hearing or reading the words successful and schizoaffective in the same sentence.