Adapting to life with schizoaffective disorder (part 2) – Stigma
That’s me in the photo – multiple ear piercings, blue streaks in my bangs, looking confident. It was my high school graduation and I had done it. A year earlier, I would never have doubted that I would graduate, but a few weeks before I started my senior year, my world came crashing down around me when I was diagnosed with schizoaffective disorder. I thought my life might be over. But mostly, I was afraid of what others would think and how they would treat me, and I knew my parents were afraid of the stigma I might face as well.
Convinced that I was different
I fully expected people to view me differently, even my close friends and extended family. I felt like my value as a person hinged on this diagnosis. A very close friend was happy that it wasn’t something worse when I revealed my diagnosis to him, and I remember being a little bit upset about it. How could he not see that I was something different now? Except I wasn’t. Without realizing it, I was stigmatizing myself.
Because of my fear of stigma, I told very few people within the first year of my diagnosis. I was convinced that everyone would think I was weird and leave me. I felt like I was constantly on guard, vigilantly watching what I said to prevent myself from saying something that would give me away as having schizoaffective disorder. My youth was spent loving being different – I wore the clothes I liked, listened to the music I liked, did my hair however I wanted to. I never tried to be anything but myself. But suddenly I was dying to blend in.
The first place I was stigmatized, was the last place I expected
One of the first places I faced stigma was a psychiatrist’s office. To make sure we had the right diagnosis, we went for a second opinion. I hadn’t even gotten halfway through describing my symptoms before he calmly put his hands on his desk, leaned forward, and said “you don’t have schizophrenia.”
I was taken aback. He began talking about a treatment plan for depression with psychotic features, a diagnosis my treatment team had crossed off the list long ago. He hadn’t even let me get to the part about having psychosis without depressive symptoms. His diagnosis was based on my ability to function highly. He was the first of three doctors to do that. The second ultimately conceded that the diagnosis was correct, and the third was a physician in an immediate care clinic who was seeing me for abdominal pain, not a mental health issue.
It felt absurd. I never thought I would be stigmatized for not being disabled enough. It was incredibly invalidating and actually made me question my experiences. Was I sure that was a hallucination? Could those sounds have been real? But after having three psychiatrists confirm the diagnosis and all of my work with clinical psychologists and schizophrenia researchers, I do feel confident that the diagnosis is accurate.
Schizophrenia is not a liability
My university also stigmatized me, though this response may not be unique to schizophrenia, but rather true for all mental illnesses. After failing to return a phone call from the counseling center, I received a call from my mom. The dean was threatening to send the police to my dorm to get me. I met with someone at the counseling center, and it seemed clear that I was not symptomatic. But after I left to go to an event with a club, I was confronted by the club president. She had received a call from the dean and asked me why I hadn’t told her I was “sick.” The school feared violence and crisis on the part of the mentally ill.
In the workplace, stigma is a concern for me as well. I would like to tell my current employers and coworkers one day, but I don’t think now is the time. In past jobs I’ve feared discrimination despite the laws protecting me. Like with my university, some employers see schizophrenia as a liability. Because of this, it’s been hard for me to feel safe at some of the places I’ve worked. I was always worried about being found out.
Facing stigma to fight stigma
While the fear of stigma quickly integrated itself into my life, there were moments where I felt comfortable being my full self. In high school, the blue streaks came back into my hair before graduation. After initially fearing life as a functional human being was over, graduating was a huge milestone to me. For a moment, I felt like myself again – just a high school kid, not a patient. And, after trying to blend in for so long in college, I began to enjoy surprising people with my diagnosis after they’d gotten to know me.
It’s normal to fear stigma. Hopefully one day it will be a thing of the past, but we’re not there yet. Despite being so public about my disorder, I do still worry about it. Up until recently I was still too afraid to tell my extended family. I was even afraid of starting this blog. But I feel happiest when I don’t feel like I have to hide. And really, no one should have to feel like they hide. So In order to erase stigma, I’ve chosen to face it head on and be open so that others know what schizophrenia is truly like. Because the reality of it is that we’re all just people.
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