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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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A Young Adult gets a Schizophrenia Diagnosis- My Experience and How to Change It
Imagine, for a moment, a young adult, sitting on the couch in a psychiatrist’s office, shifting anxiously as they wait to hear the answer to their question. The doctor sits in her chair, red nails pressed tip to tip as she puts her hands together. Hesitantly, she gives the young adult the answer they dreaded – “It’s looking to be schizophrenia.” In your mind, who is this young adult? Yourself? Your child or sibling? Or perhaps a stranger? How did you picture them reacting to this news? My guess is, not well. And that would not be surprising. When I received my initial schizophrenia diagnosis, I thought my life was…
- Advocacy, Anxiety, Depression, Eating Disorders, Obsessive Compulsive Disorder, PTSD, Recovery, Schizoaffective Disorder, Schizophrenia
Why Mental Health Education Needs to Begin Before a Career
When I started speaking publicly about schizoaffective disorder in college, it was an education on, “look what people like me can achieve despite all of this” Now, when I speak for classes and community presentations, it’s, “look what it’s really like to live with this” And when I speak for law enforcement and correctional officers, it’s, “look at how I go through all of this, but I’m still just like you.” Same life story, different goal. I rewrote my talk again in anticipation of speaking to the Chicago Police Department for the second time. I began speaking publicly as a junior in college and was both terrified and excited at…
- Advocacy, Anxiety, Depression, Eating Disorders, Obsessive Compulsive Disorder, PTSD, Recovery, Schizoaffective Disorder, Schizophrenia
Accepting Mental Illness in Real Life
If someone having visible symptoms of a mental illness makes you uncomfortable, the solution is not for them to stop. Society needs to learn to be accepting of mental illness in more than just theory. And this doesn’t only hold true for mental health. People with illnesses and disabilities of all kinds face this kind of stigma. I’ve been on both sides. I remember sitting on the L train in Chicago one evening with a friend. Across the aisle, a gentleman who had been muttering to himself began to hit himself on his forehead repeatedly. It made me uncomfortable because I didn’t know how to respond. Do I intervene? Would…
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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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What My Disorganized Thoughts Feel Like
I wake up every morning not knowing if my thoughts will stay in place today. When talking with others, my thoughts can become derailed and wander off to other related subjects. I can be perfectly aware of where the conversation is, but my mind takes me by the hand and leads me on paths that gently begin to deviate from the topic. In high school, my friends became accustomed to me piping up when the conversation headed my way, announcing, “a really weird train of thought led me to…” after making my remarks, we would retrace the steps from the original topic to my latest comment. It’s not that I’m…
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The Trauma of Experiencing Mental Illness
Trauma is often a trigger for mental illness, but experiences had due to mental illness can also be traumatic themselves. I’ve had near death or serious injury experiences. I’ve been threatened, manipulated, and emotionally abused by an ex-boyfriend. I’m a rape survivor with post-traumatic stress disorder (PTSD). While my PTSD is triggered by things that remind me of my traumas, I’ve also discovered that I have a similar response to fears about experiencing symptoms and actions related to my schizoaffective disorder. For much of my life, I have battled depression At certain points in time, beginning at a very early age, I would think about suicide. Sometimes it was just…
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Life as a high functioning person with schizoaffective disorder
There are a few different ways to define what high functioning means for someone with schizophrenia – the ability to work full-time or function as a stay-at-home caregiver or as a full-time student, good interpersonal skills and relationships, and just generally being able to function in society the majority of the time. Throughout the course of my life with schizoaffective disorder, I have always been considered high functioning. But high functioning doesn’t mean my life is normal or even symptom-free. There still may be symptoms Residual symptoms are common in people with schizophrenia and schizoaffective disorder even with medication and can occur frequently. For me, this occurs as disorganized thoughts…