You Don't Look Schizophrenic: A Decade of Misdiagnosis Before the Truth - Part 1

Part 1

Early Symptoms, Misdiagnosis, and Walking Away from the System

Guest Voices Contributor: Mackenzie Robbins

The views expressed in this article are those of the author and are shared as part of the Escape the System Guest Voices project.

“You don’t look schizophrenic.” “You talk too coherently to be schizophrenic.” “People with schizophrenia don’t know that they’re schizophrenic.” These are exact phrases that I was told by mental health professionals when desperately trying to make sense of my reality.

When I was 13, I retreated into isolation from my family. I was attacked by tactile and olfactory hallucinations that made my stomach feel as though it were being ripped open. Fingernails seemed to claw inside my skin, and the phantom smell of blood flooded my senses, leaving me physically sick. Intrusive thoughts pervaded my consciousness and kept me awake at night, as they would for years; these were images of satanic ritual abuse that a 13-year-old child had no business witnessing.

At fourteen, a suicide attempt left me hospitalized. A glaring cry for help that should have forced the people around me to look closer, but instead the warning signs were met with silence. I was mandated into therapy, which undoubtedly worsened my condition by forcing me into the role of learned helplessness and victimhood with their dictum of “it’s okay if you can’t do anything.” Their philosophy offered plenty of permission to sink, but no actual skills to help me survive. I ultimately spiraled deeper into harrowing misery, until I cautiously opened up about my symptoms in my late teens.

I saw a psychiatrist who told me I must have PTSD because I compulsively checked locks and scoped vents and closets for cameras. I was told that keeping a bag packed because I feared FEMA camps were rounding up citizens was generalized anxiety disorder. My 'odd experiences'—the only way I knew how to describe them at the time—were dismissed as panic attacks. My lack of concentration was labeled ADHD, and my self-isolation and excessive sleep became major depressive disorder.

Faced with a collection of five separate disorders that completely missed the mark, I realized the system couldn't handle my true reality. I became terrified that if I confessed to the graphic intrusive thoughts, I would be seen as a murderer or a monster—so I kept them buried. I was recklessly put through twelve medications for a phantom checklist of diagnoses that put my physical health in danger. The SSRI was neurologically activating and the prazosin was causing me to pass out because no one checked my blood pressure. They told me the side effect was “uncommon” despite prazosin being a medication intended for high blood pressure.

By 2019, my first year of college, I was failing to keep up with my grades. I was constantly falling asleep in my car in the campus parking lot and eventually had to take an academic withdrawal. Around this time, my boyfriend found me hoarding my medications. My world was shrinking; I became intensely aware of how much I was hiding my mind from the people around me. In elevators and during conversations with my coworkers, a suffocating paranoia took over. I believed that if anyone laughed, they were reading my intrusive thoughts and mocking them. Then came the demons. Even as a logical part of my brain insisted they couldn't be real simply because I didn’t believe in them, I still experienced them with terrifying clarity. Witnessing my unraveling, my boyfriend lost his temper and hurled the accusation: “You have schizophrenia.”

I sought answers from multiple professionals, all of whom told me essentially the same thing: I couldn't have schizophrenia because I didn't look the part. They brushed me off with, 'You're on the right meds anyway, so you shouldn't be worried.' Desperate and entirely dismissed, I quit the system right then and there. I stopped all of my medications cold turkey. I was incredibly lucky to escape severe SSRI withdrawal—a danger no one had bothered to warn me about.

Sitting alone with my medical records, I finally looked at my medication list: a heavy 200 mg antipsychotic, an antihistamine for anxiety, a benzodiazepine. I felt a wave of hot anger at the system, and at myself, for not even knowing what chemicals had been pumped into my body. I spiraled into psychosis for the next two years while trapped in a soul-crushing abusive relationship. The world around me changed shape: my perspective shifted to an out-of-body view, where the ground and my arms looked further away, and the world’s colors looked strangely dim but more green. I had solipsistic delusions—the belief that I was the only one who existed other than demons who were tormenting me in what I believed to be hell, and that my family members were puppets—mere extensions of this evil presence designed to deceive me.

Continue to Part 2

Part 2 explores:

• Escaping an abusive relationship

• Psychosis and hallucinations

• Receiving a schizophrenia diagnosis

• Rebuilding life after years of confusion

Read Part 2 →