- That doesn’t mean it’s not awkward.
- It doesn’t mean I don’t wonder if people feel bad for me
- It doesn’t mean I don’t wonder if people think Wow she’s pathetic. Why does she tell everyone her problems?
The truth is that I don’t broadcast all my problems online. I do keep parts of my life private, but I’m a confessional writer and memoirist. There is more to me than my illness. I have secrets. I show one small facet of myself online. Sharing my diagnosis is 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 treat me differently. 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. Someone might happen upon my post and realize that they, too, can get through it.
So here is my story: I have bipolar type schizoaffective disorder. It means that 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 that I am possessed
(yes, these have all been suggested to me).
Individuals with schizophrenia do not have enough gray matter in the brain. It’s a disease with a physical cause like heart disease. Can you “power through” heart disease or diabetes? Can you use the power of positive thinking to cure Alzheimer’s? Then, don’t suggest that I can cure my illness that way. I have to take medication, and if I don’t, my delusions and hallucinations could lead me to lose touch with reality.
Sometimes, when delusional thoughts start popping up in my head, I start to wonder if there are chemicals in the water… if the government is poisoning us. I’ve been told that the idea of mental illness was invented by Big Pharma, that it’s all a scam. Sometimes I believe this bullshit 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…
Soon, I can’t tell if I dreamed 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, even unable to speak clearly at times. I spiral, losing touch with reality. I can no longer determine the world in my head from the real world.
All because someone told me that I just needed to pray more, that I just needed to try harder, that just I 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 that I’m not sick because well, not being sick would be great. But this isn’t true. I have a brain disease.
People don’t understand that. Most simply aren’t educated. So, this is me telling you right now that schizophrenia is a disorder of neurochemicals that transmit messages between neurons in the brain and quantity of synapses. 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 that 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 homeless. I’m not stupid or a genius. And I’m not ashamed (okay, maybe a little even though I shouldn’t be). 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 being honest about who I am.
It’s awkward when people tiptoe around me like I’m a time bomb. Would someone hide that they have asthma or diabetes? No, not in any typical circumstances. I don’t understand 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.
I am a normal person. 22 years old, employed, happy, stable. I drive, have friends and family, 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.
My relatives will keep pretending that I don’t experience psychosis. They will keep pretending that they don’t hear me when I mention a symptom every once in a while. They will keep pretending that 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 that they can see and hear me. And I’m not going away. I am here, and I am 1 out every 100 people who live with schizophrenia. I will live and die, sure, but psychotic disorders are not going away anytime soon. These disorders affect more than 3 million Americans. And when someone suggests they are anything other than a disease, that leads us to question our diagnosis, even to 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 that 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 psychotic disorders?
Stop and think before you speak because your words could cost me my life. Your words are dangerous and harmful. When uneducated individuals like you talk to me, I stop taking my medication and start planning to go live in the wilderness where I could get lost, starve, or die of dehydration, just to name a few of the things that could happen. Your words could derail my progress and send me down a psychotic path that looks a lot like Alex Supertramp in Into the Wild, a path that led to him dying alone in a bus due to starvation after ingesting a poisonous plant.
I am scared of my mind, of the things it tells me and shows me. I am scared of the ideas and delusions I get 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 please, STOP.
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 stressed and emergent symptoms have begun to appear. You could catch me when I’m vulnerable, sad, or bitter about being sick. When it won’t be so easy for me to laugh away your ignorant words.
Your words will cause me to forget the awareness and education of my own illness until I am nodding, smiling, saying Yes! I am 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, or a demon.
Stop. Think. Wait…
Do not say these things to me.
Your words could cost me my life.
This piece was also published on The Mighty.
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