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Dear Mental Health Professionals – You Need People With Lived Experience On Your Team. Here’s Why.
Dear researchers, clinicians, and other professionals who work with people who experience psychosis, My name is Katie and I have been living with schizoaffective disorder since 2008. And you need people like me. I don’t mean as patients or research subjects or consumers of any kind. I mean as a fellow professional. Because my lived experience, and that of others, can change the way we look at and treat those living with psychosis. I can give you insights you can’t find anywhere but the minds of those living with psychosis. I’ve been a psychosis advocate for years. I’ve worked independently, as an ambassador for NAMI Chicago, and, most recently, as…
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What I didn’t have to give up because of schizoaffective disorder
It’s all gone. That’s what I thought when I received my schizophrenia diagnosis, later updated to schizoaffective disorder. In my head, I watched everything I’d wanted and planned go up in flames. At first, I was resigned to it. But, over a year later, mental health advocacy caught my eye and I took up the chant that a diagnosis on the schizophrenia spectrum is not a death sentence. And, though I stand by that, I think mental health advocacy, at least when it comes to severe mental illness, misses some things. This illness isn’t my fault, but I still felt like, by having it, I had to give certain things…
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Social Skills, Schizoaffective Disorder, and Accepting My Needs
“Please.” I twist the word in my mind, stretching it, arcing it, and wringing out every drop of meaning. I never thought I would be learning social skills at 31. I turn “please” and the other words in that sentence of my coworker’s email over and over in my head, playing them in different tones of voice, picturing what it might look like in person. Would her face look like it does when I know she’s happy? And what if I can’t decide what feeling I think is behind it? I can’t always peer inside your mind the way other people can. Though not due to lack of empathy, identifying…
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Dear Schizoaffective Disorder – Letters to My Illness
Dear schizoaffective disorder, You are the worst roommate I have ever had. You took up residency in my brain, but refuse to pay rent. I know there’s no evicting you. And I know you’ll probably never play by my rules, but we need to find a way to live together. Dear schizoaffective disorder, You’re a bully. You lie in wait until you see my edges fraying. Then you come at me, claws out. There is no valor in preying on the weak. And I can barely imagine the suffering of the people without effective treatment on whom you prey. Sometimes I fight back. But sometimes I don’t have the energy…
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Life with Schizoaffective Disorder – the Quiet Changes
Schizophrenia is not all hallucinations and delusions. There is a quieter suffering. Here is how the shame and self-doubt impacted my life.
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How My Brain Works After Schizoaffective Disorder
At 17, I was a problem solver. I was an academic thinker who thrived on logic puzzles and complex literature. Creativity was a second language – drawing, acting, photography, and stream-of-consciousness free writes wrapped up in metaphors. Whether or not I was any good at them didn’t matter; the ideas and motivation just flowed naturally. Outside of undiagnosed depression and obsessive-compulsive disorder (OCD), my brain was efficient and extremely sharp. Each of my mental illnesses has had its impact on my mental functioning, but with the onset of schizoaffective disorder, things took a sharp turn. Though my passions and other areas of interest remain the same, my brain works differently…
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My Experience with Mental Illness in the Workplace
In college, I interviewed for a position in the lab of a professor at my university. I eagerly explained that part of why I was interested in his work and the role was because of my personal experience with schizoaffective disorder. He gently advised me that my diagnosis was something I should keep closer to my chest in job interviews. At the time, I was almost offended. I’m out here trying to break stigma. How can I do that if I’m not open about it? But, over the years, I’ve come to understand why he said that. At this point in my life, I’ve been through several jobs in some…
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Why we can’t forget about people with schizophrenia
It’s exciting to see so many organizations and individuals coming out to support and shed light upon mental illness. Brave people are standing up and sharing their stories, something that can be very frightening to do. The fight against stigma is gaining support daily. But in our efforts to dispel the myths and stereotypes around mental illness, there are still diseases that are often overlooked or treated differently. When it comes to advocacy, we can’t forget diseases like schizophrenia and schizoaffective disorder. The fear of the word Even within the mental health community, there is a great deal of stigma around disorders involving symptoms of psychosis like schizophrenia. The words…
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When your child is diagnosed with a schizophrenia spectrum disorder
It’s understandable if your emotions are on high and if fear is flooding through your veins. Schizophrenia and schizoaffective disorder are scary words. You might be wondering what this means for your child’s life. Will they be able to live independently? Will they be happy? As much as I wish that I could, I can’t answer those questions for you, but here’s what I know. Not only has your child’s life changed forever, but yours has too. Whether your child is young or an adult, it’s going to be a complicated road full of obstacles in treatment, education, work, and even just daily life, but no matter how bleak the…
