Advocacy,  Schizoaffective Disorder,  Schizophrenia

A Young Adult gets a Schizophrenia Diagnosis- My Experience and How to Change It

Katie, a young adult with brown curly hair and a green striped T shirt sits with her legs pulled to her chest with her arms wrapped around them and her cheek resting on her knees while wearing a fake blue flower in her hair.
Katie as a high school senior during her first year with schizoaffective disorder

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 over.

Though my face may have been still, as the door to my psychiatrist’s office clicked closed behind my mom and I, my brain was slowly absorbing the words that had come out of my doctor’s mouth. by the time we got into the car, my world was on fire. I was a senior in high school with everything going for me and I felt like all of it was thrown from the table in one clean sweep. What was left? What part of my life could I preserve to pretend that this wasn’t real? But that’s the thing about serious mental illnesses and brain diseases. They seep into every little corner until your life is saturated, even bleeding into the lives of caregivers.

Schizophrenia changed not just my life, but also the way I viewed it.

After my diagnosis, I saw myself as “the sick girl.” I was the one who racked up the diagnoses and took more pills than even others with similar illnesses. I hated myself sometimes and often thought I was somehow different than those around me. I was broken and unfixable. It made it hard to feel like I belonged anywhere – in a career, in college, even among my friends. For a long time, I told myself I didn’t believe that anymore, but all I had really done was shove it into a box to keep it out of sight. It has really only been very recently that I realized that, after nearly 14 years with this disease, I am slowly but surely separating myself from it. 

I know that I am not alone in those kinds of experiences.

Even though I was relieved to have a name for what I was going through and to know it wasn’t some kind of fundamental flaw in myself, it nearly broke me. And, since then, others have shared with me that they experienced similar feelings as well. It’s like feeling as though you’ve just died, but are still alive at the same time. It impacts nearly every thought you have and decision you make, whether you try to fight for your stability or are not ready or able to fight back. 

Join me again in that psychiatrist’s office. 

This time that young adult is not a stranger. This is you or your child, perched on the edge of the couch. The anxiety is still there, as is the tension. The word schizophrenia escapes the psychiatrist’s lips and circles in the air again like a thick smoke. 

But before you respond, there are a few things I want you to consider. 

Schizophrenia is a treatable disease. Though it is life long and the waters can get very rough, it is not the end. Medication and therapy are helpful for some people and new treatments are in the works. Early intervention clinics for young adults with first episode psychosis are becoming more prevalent and can be effective. There are supportive communities of others living with schizophrenia and related diseases as well as communities of caregivers and loved ones. Accommodations can be made to support academics and in the workplace. Some things may be significantly more difficult, but the diagnosis alone does not mean your life is over. People with schizophrenia can graduate high school, college, and get advanced degrees. They can have fulfilling careers and meaningful relationships. Schizophrenia does not rob you of the ability to find purpose in your life. And it does not inherently steal all happiness.

Now you are back in that office, the young adult on the couch with that diagnosis hovering over your head. How do you respond now? Fear and anxiety are still perfectly understandable. But is that black as night, life-over feeling as strong as it once was? 

I wish I had a better understanding of schizophrenia before I was diagnosed.

After receiving that schizophrenia diagnosis, my family and I tried to educate ourselves as much as we could. But had I known more at the time of my diagnosis, I don’t think it would have been as detrimental to my mindset and view of myself. Sometimes i wonder what my life would have looked like if I hadn’t lived my young adulthood as “the sick girl.” What would life have been like if I didn’t see myself as a lost cause? I couldn’t say for sure, but I think I would have really gone for the things that I wanted instead of feeling like I could not have them. Maybe I would have been less critical of myself. Maybe I would have been happier. Hope is powerful. And there is hope for people with schizophrenia.

How do we convince the world that schizophrenia does not have to be a death sentence?

Much of the United States has turned its back on people with severe mental illnesses and brain diseases. Unfortunately we are often left behind by advocacy organizations as well. Getting people to listen is not going to be easy. But we need to continue to raise our voices, particularly those of people who live with schizophrenia and related disorders and their caregivers. There is nothing like putting a voice and a face to a disease like schizophrenia to show that there is hope. Because it’s not just people living with it and any young adult at risk or recently diagnosed who need hope that they will survive. We need the world to see that too.


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