This Is Not What Schizophrenia Looks Like

I was in a small white room sitting in a chair bolted to the floor. A woman sat in front of me with a clipboard, asking me questions about my symptoms; her straight, black hair falling over her face as she looked down to take notes. A voice seemed to reach out to me from the ceiling. I glanced up, behind me, between my feet, looking for the source of a sound that came from inside my head. I felt far away, like I was looking at my life through binoculars from across a body of water. The woman turned her head ever so slightly, trying to meet my eyes, patiently waiting for me to regain my focus, to come back into the room and into my body. But I only floated further away. Her long black hair didn’t look so straight anymore. It wobbled and grew into furry legs around her face. And her eyes were growing wider, two black beads blinking at me expectantly.

I looked at my arm, riddled with goosebumps. My back arched like a cat’s. I knew what was really going on. She was a spider. She was a spider pretending to be a doctor. My back arched more as I tensed up, suddenly knowing why I felt so uncomfortable, so scared. I panicked, my body frozen, my thoughts racing. She is a spider! A gigantic spider! Somebody help me! She’s going to eat us! 

I caught my mom’s eye, silently pleading for us to leave. She looked scared, too. I had to protect her. She didn’t know. She didn’t understand. I couldn’t let anyone know I knew she was a spider, that I knew she brought us in this small, windowless room to wrap us up in her web and suck our blood. I had to remain calm or she would strike.

That’s what experiencing symptoms of schizophrenia looked like for me. My life was all about remaining calm despite feeling terrified and being convinced I was in danger. I thought dead people lived in my apartment. I thought they followed me to school. I thought there was a person with an axe underneath every bed, behind me every time I sat down, waiting to cut my head off. It sounds pretty grim, doesn’t it? How did I stay calm? Well, I was pretty cranky. Still am. I am usually tense and irritated, written off as moody. All of those people who told me to cheer up, to just think positive… they didn’t know I was convinced dead people were stalking me and trying to kill me, but that didn’t make it hurt any less when they said it. Every window I walked by had the same dead girl looking in at me. Her eyes were bloodshot, and she was covered in bruises. Her long hair hung off her like a mop, thick with glass and blood and dirt. She followed me everywhere I went. She’d been there for years, and yet no one else seemed alarmed by her presence.

It was up to me to keep everyone safe. From her. From the spiders. From the murderers. From the ghosts and demons. From the monsters that toyed with me every night, pressing their knives up against my face, while I tried not to breathe. To become invisible. No one listened to me. I was keeping everyone alive for years, and no one seemed to notice or care. I tried to tell them. But they didn’t understand what I meant. When I sobbed about the world not being real, about being so scared, about how I couldn’t sleep at night, a cold hand just patted my shoulder. How could they have known? I don’t know what they thought about a 10-year-old sobbing about things that didn’t make sense. Maybe they thought I had watched a scary movie or had a bad dream. I don’t blame anyone for not knowing what was going on, even if I did feel misunderstood. Soon I would be shoving papers at people, asking them to read this or that. I found a way to get people to listen, to understand.

A decade later and here I was, in front of a murderous spider and my mother, doing what I did best: keeping us safe. That was my biggest task. I never understood why God made such a scary world or why people were trying to kill me and my family all the time. I never understood how my sisters could fall asleep at night so easily, while I stayed awake with dry eyes, checking corners and closets for people that were trying to hurt us. I knew they were out there. I could feel them. I could hear them. I could even see them sometimes in windows and through a cracked door. I fell asleep hours after my sisters closed their eyes. My eyelids became too heavy to hold up. I ground my teeth together and prayed over and over. God, please don’t let them kill us. Please, please, please. I fell asleep begging for mercy. When I gave up on trying to stay alive, I begged not to go to hell. Every morning I woke up just as shocked as the previous morning. Here I was, alive, every limb intact. And my family was fine, too. But then the game would begin again when I saw the dead girl in the mirror behind me and my sister as we got ready for school. I couldn’t catch a break. I couldn’t catch my breath. I was dubbed anxious, nervous, wound up, angry, tense. Who wouldn’t be angry and tense trying to keep themselves and everyone around them alive all the time, despite murderers and spiders the size of cars trying to bite our heads off?

Sure, none of it was real. I was experiencing hallucinations, delusions and paranoia, but I didn’t know that. No one did. There may have been no one stalking me, no one trying to kill me and my family, but the fear I felt was real. As the years went by, my mind began to come up with excuses as to why no one else was as scared as I was. I thought I was special. I thought I could see ghosts or people from other dimensions. They were still real, a danger to me and my family, but the logical side of my brain was trying to make sense of it, trying to figure out what was going on. My life felt like a horror movie. I learned to hide my fear and pain with anger. I learned to remain calm even when I was sure there was someone behind me about to strangle me. I learned to look behind me slyly in class, pretending to scratch my back or cough, when in reality, I was frantically waving away a dead person. I was trying to be a normal college student. I didn’t have time to be killed today. But they never listened. And I’d watch as my hallucinations would drill holes in my bones and peel my skin back. I would sit in my chair during a lecture, rigid, pretending I was really upset about something other than being killed right there during that very moment. But I couldn’t keep it going for much longer. It was all going to come crashing down at some point.

I must have sensed that things were getting worse because I tried to go to counseling at my college, the University of Georgia. I spoke with a woman who seemed to write me off as just another anxious, stressed college student. During the consultation, she told me they just didn’t have room for me. I wondered why she even had me come in for the consultation, but I’m guessing she checked a box that said something along the lines of “not suicidal” and shuffled me out of her office and her conscience. That was January. By March, I would spend most of my time staring into space, unable to find the motivation to go to class. One day I simply walked out of work mid-shift and never went back. I felt like I was in a trance. While hallucinations and delusions are the symptoms of schizophrenia most people know about, disorganized thought and speech, apathy, social withdrawal and blunted emotional responses began to accompany my voices and visions. My boyfriend would try to talk to me, but only rushed angry gibberish would leave my lips. He called it “word salad,” like it was no big deal I couldn’t remember simple words like “broom” or “cup.” I’d try to practice smiling or looking surprised, but I felt nothing. My face was blank. I felt like stone. I was completely withdrawn and uninterested in the real world. I’d try to connect with my boyfriend when he was home from work, but most of the time, I’d just sit on the couch looking at the blank television, watching the screen twist and turn like a time warp, wondering if all this fog in my brain was ever going to leave.

In the room with the spider, her clipboard and my mom, it was somehow decided I needed to be an inpatient at a local psychiatric hospital. I steered clear from the spider and hugged my mom goodbye. An ambulance took me to the hospital where I was stripped and searched for weapons or anything else people try to smuggle into the hospital. It was evening and I laid in my hospital bed, my new roommate snoring a few feet away from me. I knew it was the end. Being hospitalized meant I had failed at life, at being an adult. The dead people, the ghosts, the demons, whatever they were… they were finally going to get me. They were going to kill me until I was annihilated, nonexistent. And I was too tired to do anything about it. The medication made me too tired to do my little rituals to keep myself safe, like opening a drawer five times or winking in the mirror twice. I slept most of the time, occasionally waving away my newest hallucination I referred to as the Angel of Death. Everyone thought I was crazy, even my boyfriend. I pulled the thin blanket up to my neck and curled up on my side, waiting after all these years to die. The Angel of Death wasn’t listening to my pleas, and my eyelids were so heavy. My arms were too tired. The blanket wasn’t thick enough to make me feel safe. There weren’t enough pillows to stack up around me to keep the bad people out. I didn’t have any tricks left. I didn’t even try to pray for help, to beg for my life. It was useless. My perfect life living in Athens with my boyfriend was over. I had failed. And now the Angel of Death was here to take my soul.

That’s one of my lowest points. I was all alone in a cold, dark room convinced that something my mind created was going to kill me. That’s what experiencing symptoms of schizophrenia looks like. It looks different from what you see in movies. It’s pure fear. Something very different than what the movies portray when they are using schizophrenia to give a killer a motive or make a character more interesting. I’m a young adult who was hospitalized for psychosis and diagnosed with schizoaffective disorder, a mood disorder accompanied by symptoms of schizophrenia. For most of my life, I’ve been terrified. I thought people were trying to kill me. At my worst, I said hurtful things to people and raised my voice in anger and fear, things people who don’t experience schizophrenia do all the time. I was a victim for a long time, but I was never a villain.

So, why are you demonizing my illness by pretending that this is what people with schizophrenia look like? Why are you demonizing me? Why do you want to dress up as me for Halloween? I didn’t wear a mask to cover my mouth. I was never handcuffed. I have a mental disorder. I’m not Hannibal Lecter in “Silence of the Lambs.” But apparently, some people think there isn’t much difference. Some people think it makes them funny or interesting to try to dress up as me at my worst. I still have my hospital bracelet that says “Ward 2.” It was never part of a costume. It was my life. If you want to dress up as a scared little girl crying in a hospital bed, then be my guest. That’s what schizophrenia looks like for me. And it may look different for every person, but not one of them looks like anyone in the “Skitzo Costume” pictured here. Do you hate us? Are you trying to hurt us? Do you think mental illness is edgy and different? How easy is it for you to put on the mask of fear and pain for fun, taking it off whenever you like, while the rest of us in the mental illness community cannot ever take off this stigma that people like you have created? My life isn’t a movie. My illness isn’t a joke. For years I lived in fear of a world that I thought wanted only to hurt me. Don’t make that world a reality for me by wearing a costume that mocks me at my lowest, reminding me that society views me as a threat or a freak.

Schizophrenia looks like fear, pain, and confusion. A cheap plastic costume will never come close to how it feels to have a hallucination breathe down your neck during class. To see a snake slithering up the bathroom sink, while you’re trying to brush your teeth. To smell a rotting corpse in your closet when you’re trying to go to sleep. The handcuffs, the chains, the mask. They’re all failed attempts to try on a life for a few hours that you could never imagine.

Screenshot via Amazon.com