I’m passionate about sharing my story with schizoaffective disorder. I’m adamant that 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 writing about my condition 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?
I don’t talk much about my condition in person. I have before, but it never goes well. Plus, I get tired of talking about it. There is so much more to me than my illness. I show one small facet of myself online. This blog is my safe place. It’s where I break the silence and come out of hiding. Sharing my diagnosis was a conscious choice I made to raise awareness and fight stigma, but I am multifaceted, and I show the internet only one small piece of me.
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 mentally ill writers 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.
Schizoaffective VS Schizophrenia
So here is my story: I have bipolar type schizoaffective disorder. It means I have bipolar disorder (type two) accompanied by symptoms of schizophrenia. Let me repeat that because many people, including myself, have been confused about this: I have bipolar disorder with symptoms of schizophrenia. This is called schizoaffective disorder. It’s a brain illness — 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 and related disorders have a loss of brain tissue. Again, it’s a brain illness, not a behavioral disorder.
Sometimes I think there are chemicals in the water, that the government is poisoning us. I’ve read that mental illness and related disorders were 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’ve stopped taking my medication before and after a few days, all my symptoms return. I haven’t been able to tell if I dreamed something or if it actually happened. I’ve gotten angry with my sister or my boyfriend for things they said to me in a dream. I’ve seen seeing shadow figures follow me around. I’ve experienced a feeling deep in my chest that someone is following me. I’ve gotten paranoid, unable to focus, unable to speak clearly without extreme mental effort. I’ve spiraled, losing touch with reality. I’ve been unable to 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 and eat better. 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 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. Just this past summer, I got into crystal healing, tarot cards, essential oils, and yoga. I stopped drinking soda, increased my water intake, and limited my access to social media. These methods are all fine and dandy. They have improved my life and eased the pain of migraines and neck pain. The yoga and essential oils are good for quieting my anxiety, while the crystals and tarot cards were a fun hobby that I lost interest in. They aren’t a cure any more than medication is, though. However, medication is the most effective method for many people, including myself.
Can Schizoaffective Disorder Be Cured?
The truth is that I have a physical disease called schizoaffective disorder. 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. I’m unhappy about this, but that is my reality. Even when I no longer experience symptoms of schizophrenia, I still have to take my medication. This isn’t the flu. It’s a chronic illness. There is no cure. There is only recovery and maintenance. Those are the hard and sobering facts I’ve had to accept.
I am a normal person, 23 years old, employed, happy. I’ve been stable for over a year. I drive, watch the same TV shows you do, and go out with my friends. I’m a freelance writer studying in college. I hope to live a fulfilling life and have a successful career. Why shouldn’t I? I don’t think I will ever stop feeling self-conscious about sharing about my life with schizoaffective disorder, but that doesn’t mean I’m going to stop.
Some friends and family don’t want to hear about my symptoms. It hurts them to hear about it even though I’ve accepted the symptoms and even welcome some of them now as a part of my unique and interesting life. Society doesn’t want to hear it, either. The world wants to blot me out like a stain because they don’t understand. What people don’t understand is scary. But I am here, and I live with schizoaffective disorder. I am 1 out every 100 people who live with symptoms of schizophrenia. I will live and die, sure, but schizoaffective disorder and related conditions are not going away anytime soon. These disorders affect more than 3 million Americans. When anyone suggests these conditions are anything other than an illness, that leads us to question our diagnosis, even to stop taking our medication. And that is dangerous.
Ignorance About Schizoaffective Disorder
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. Sure, there are problems with the way mental illness and medications in America, but that’s a conversation that can’t intersect with my health and the medications I take.
Before you open your mouth…
Are you a psychiatrist?
Have I asked for your opinion?
Have you done thorough research on schizoaffective and related disorders?
Stop and think before you speak because your words could cost me my life. Your words could be dangerous and harmful. Because when uneducated people fill my head with lies, 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.
At times, 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 if I relapse, I am scared of ignorant people. Their ignorance could cost me my life.
So stop. 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 living with schizoaffective disorder, 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 talk to me about indigenous healers or alternative health practitioners. Do not tell me I am a genius or a healer. Stop. Think. Wait … Do not say these things to me.
Your words could cost me my life.
An older version of this blog post appeared on The Mighty.
About The Author:
August Blair is the founder of Survival is a Talent. She is a freelance writer and blogger. She is passionate about mental health, social issues, and the environment. She studies at The University of North Georgia.