Why Your Ignorance About My Schizophrenia Could Cost Me My Life

I’m passionate about sharing my story, and adamant those who struggle with mental illness should not be ashamed. But I can’t just talk the talk; I have to walk the walk. That means looking old acquaintances from high school in the face around town, even when I want to hide. I am open about my diagnosis, but that doesn’t mean it’s not awkward. It doesn’t mean I don’t wonder if people feel bad for me or think, “Wow she’s pathetic. Why does she tell everyone her problems?” Because I don’t broadcast all my problems online. I do keep parts of my life private. There is more to me than my illness. I have secrets. I show one small facet of myself online. Sharing my diagnosis was a conscious choice I made to raise awareness and fight stigma.

I’m not going to pretend like it doesn’t bother me or that I don’t care when people look at me like I have two heads. I do care. I’m open about my illness anyway because if people like Elyn R. Saks, Susanna Kaysen, and Sylvia Plath didn’t share their story, I wouldn’t have even made it out of the hospital, much less gotten my life back. They got me through my darkest moments, and I feel as though I’ve been passed the baton.

So here is my story: I have bipolar type schizoaffective disorder. It means I have a mood disorder (in my case, bipolar disorder) accompanied by symptoms of schizophrenia. It’s a physical brain disease — not a spiritual crisis, not a result of bad parenting, not any sign I am possessed (yes, these have all been suggested to me). Individuals with schizophrenia have a deficit of gray matter in the brain. It’s a disease with a physical cause like heart disease. I have to take medication, and if I don’t my delusions and hallucinations could lead me to lose touch with reality. 

Sometimes I think there are chemicals in the water, that the government is poisoning us. People tell me the idea of mental illness was invented by Big Pharma, that it’s all a scam. Sometimes I believe them and get to thinking that, if I could just get to a clean water source, my symptoms would go away. I stop taking my medication and after a few days, all my symptoms return. I can’t tell if I dreamt something or if it actually happened. I get angry with my sister or my boyfriend for things they said to me in a dream. I start seeing shadow figures follow me around. I get a feeling deep in my chest that someone is following me, planning to murder me the minute I let my guard down. I become paranoid, unable to focus, unable to speak clearly without extreme mental effort. I spiral, losing touch with reality. I can no longer determine between the world in my head and the world outside of my head: the real world. 

This is all because someone told me I just needed to pray more, I just needed to try harder, I just needed to get off my medications. That I’m not sick; I’m special. That I’m highly empathic and simply don’t know how to deal with it. That I am possessed by a demon, have a demon latched onto my aura, or that I am simply a “healer” and in another culture, I would be well-respected as someone who is in touch with the spiritual world and psychic phenomena.

And to tell you the truth, it makes me angry. I am pissed off. I am sick and tired of people who love me telling me things that are dangerous to my recovery. They are ignorant and uneducated. They don’t mean to do harm, but the fact is they are. And I’m very impressionable. I’m gullible. I’m susceptible to delusions and love to latch onto ideas I’m not sick because well, not being sick would be great. But this isn’t true. I have a physical disease.

People don’t understand that. Most simply aren’t educated. Individuals with schizophrenia (and related disorders) have enlarged ventricles, as well as “lower levels of gray matter in the brain.” I will have to take medication forever. Stop calling me every few months to tell me I no longer need my medication since I am not having any symptoms. This isn’t the flu.

And no, I’m not violent.  I’m not stupid or a genius. And I’m not ashamed. But that doesn’t mean it’s not awkward when ignorant people frown at me or mutter, “She just wants attention, Gary. She’s young. She’ll grow out of it.” All because I am simply being open about who I am. I hear the gossip about me, and it’s awkward when people tiptoe around me like I’m a time bomb. I don’t know why I’m expected and even encouraged by those who love me to “live under the radar” or share my story only anonymously. The way some people look at me hurts, but it’s better than living a life of secrecy like I did for over a decade.

I am a normal person, 22 years old, engaged, employed, happy, stable. I drive, watch the same TV shows you do and hope to have a fulfilling life and successful career. Why shouldn’t I? I don’t think I will ever stop feeling self-conscious about sharing my story, but that doesn’t mean I’m going to stop. You can keep pretending I don’t have schizophrenia. You can keep pretending you don’t hear me when I mention a symptom every once in a while. You can keep pretending you don’t see my writing online, that I didn’t just publish a story about my life with schizophrenia, forever tarnishing our shared last name.

But I know you can see and hear me. I am here, and I am 1 out every 100 people who live with schizophrenia. I will live and die, sure, but schizophrenia and related disorders are not going away anytime soon. These disorders affect more than 3 million Americans. And when someone suggests these illnesses are anything else, that leads us to question our diagnosis, even stop taking our medication. And that is dangerous.

So do not call me, text me or hold my hand in yours and look me in the eyes, telling me softly I am just special, that I am just not trying hard enough, that I just need to get right with God, pray more, or “cleanse my aura of demons and bad energy.” Don’t tell me that I am being scammed and brainwashed by Big Pharma.

Before you open your mouth… Think. Stop. Are you a psychiatrist? Have I asked for your opinion? Have you done thorough research on schizophrenia and related disorders? 

Stop and think before you speak because your words could cost me my life. Your words are dangerous and harmful. Because when people like you talk to me, I stop taking my medication and start planning to go live in the forest or the desert where I could get lost, starve or die of dehydration, just to name a few of the things that could happen. 

I am scared of my mind, of the things it tells me and shows me. I’m scared of the ideas I get from my mania and the delusions that lead to bad decisions, to totaled cars, to ruined relationships. But even more than my illness and the damage it can do, I am scared of you, because you and your ignorance could cost me my life. So stop. Please. Please. Please. I am strong today, and I know the truth, but I am not strong every day. And you could catch me on a bad day. You could catch me in a weird mood. You could catch me on a day I forgot to take my medication or took it a few hours late. You could catch me when I’m really stressed and emergent symptoms have begun to appear. You could catch me when I’m vulnerable, impressionable when I’m sad or bitter about being sick, when it won’t be so easy for me to laugh away your ignorant words. They will wrap around me like a snake, squeezing the logic, the knowledge of my own illness out of me until I am nodding, smiling, saying Yes! I am just special! I am a healer! I am a genius! I am being brainwashed! It is time to leave town, to hike the PCT, to travel abroad all on my own, to leave in the middle of the night without telling a soul.

This is the power you have over me. Do not talk to me about your conspiracy theories. Do not talk to me about your religion. Do not tell me I am a genius, a healer, a god among men. Stop. Think. Wait … Do not say these things to me.

Your words could cost me my life.

Editor’s note: Please see a doctor before starting or stopping a medication.

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Unsplash photo via Tim Gouw