*This is a post dedicated to my Mental Health Month series, where each week we talk about different diagnoses, share stories, and ways toward wellness. Tomorrow we will cover Bipolar Disorder. If you have some experience to share for any of the topics we cover (or have covered), contact me here or on my social media handles and we will get you featured.*
Today we’re talking about schizophrenia and related diagnoses, one of which I have. I’ll share some of the things I’ve experienced and ways that I’ve dealt with certain aspects.
The reason Schizophrenia is now considered a spectrum is the wide ranges of experiences people have, and the level of distress resulting from those experiences. Our last DSM separated Schizophrenia into subtypes like “paranoid, residual, undifferentiated, disorganized, and catatonic.” I think it was a big sigh of relief when these boxes were removed. The DSM 5 now reads with these diagnoses:
The thing that gets misconstrued often about psychosis is the level of danger someone experiencing an episode poses. Of course there are cases of those lost in delusion acting aggressively. There are many more cases of abuse and violence against those in psychosis.
The thing that isn’t understood is that when we are in this fragile state, everything is terrifying. Your smile is terrifying–a sign you’ve been conspiring against us. Your tone of voice, your pitch of voice, your very existence in our world means you are, in one way or another, against us. Every person, television, web camera, corporation, government institution, is a hunter and we are the prey, frightened only because we’ve just realized this whole time people have been plotting to harm us. And suddenly every bad thing that happens, or has happened, every innocent mistake we witness, every abnormal movement becomes apart of that plot.
Not everyone is vocal and so obviously outlandish. I, for example, spent a lot of my time in my room with a blanket over my head playing Minecraft in the dark. I spent five or six days a week doing this. Meanwhile, one of my coworkers controlled mby body, blocked the thoughts she hated, inserted new ones, forced me to eat a bowl of cereal, hounded me until I did it. I couldn’t walk properly and I’d lost awareness of my body because it wasn’t really mine anymore.
I spent weeks playing Grand Theft Auto in a room piled so full of trash and clothes my door couldn’t open properly and I couldn’t touch my carpet. The sheriff managed to shove my door open, though. That was when the voices were keeping me up all night with screams and mocking banter and whispers. I sat rigid and silent, only answered their questions with “yes” or “no” even if they asked an open ended question.
My diagnosis is Schizoaffective, first diagnosed as Bipolar 1 and several other things.
What pains me is when I hear about people deep in their experience who trigger the fear in officers that they’re trained to have to protect their lives. One man, over 8 years ago, came at an officer with a boom. This officer knew of the man’s psychosis and still opened fire with 7 shots.
Another man, silent, mute, like me, but naked, walked along a highway in the middle of the night. A trucker stopped him, called police when the man, also diagnosed schizoaffective, crawled up on the roof of his semi. The cops, assuming he was on drugs, gave him a pair of shorts or something, called the paramedics who took his vitals. The Sargent then drove the man to a closed gas station and dropped him off. That man then wandered back to the same highway and was killed by a car that didn’t see him.
The Sargent’s defense was that he’d dropped the man off in a safe place.
Are psychotic people dangerous? Not usually. What’s dangerous is the situations made volatile by people who don’t understand.
I’ve written on this before (big surprise) and if you’re curious, you can read the post, “Is Schizophrenia a Brain Disease?” You may be surprised by the answer. If you frequently keep up with psychology research, not the pop psychology agenda, you probably won’t be.
For some people that means taking medication or living in a group home where social skills and independence are prioritized. For others, this means getting off of medication or moving out a toxic living environment. For all of us, though, who choose some version of wellness, it usually means keeping a routine, engaging in consistent self-care, and learning to manage our experiences to the best of our abilities.
Not everyone hears voices 24/7. Not everyone’s voices are external. Not everyone’s voices are negative. Not everyone has visual hallucinations. Not everyone is hospitalized constantly, or for insanely long periods of time.
So what happens to those who don’t reach a stable wellness? A lot of people give up on those who don’t seem to present a lot of insight, as if it’s someone else’s responsibility to make them develop insight. I don’t want to say that stability isn’t achievable for some. What I will say is that the level of insight depends on many things: support, past trauma, current trauma (hospitals, police, doctors), self-esteem, general worldview. All of this gets distorted in psychosis, yes, but the foundation is the same. If someone has spent a lifetime in child abuse where intimidation, violent threats/attacks, and coercion dominates their perception, assuming even bizarre things like aliens probing their thoughts is routed in a feeling of lack of privacy, feeling intruded upon, and invaded. If those underlying feelings are never addressed, if only obvious positive symptoms (like hallucinations) are dulled, and that is called the ultimate progress, then that persons self-esteem, drive, and hope will suffer.
Much of the mental health system stifles the cultivation of wellness for those with psychosis in many ways.
Living normally can mean many things. It could mean working. But it could also mean just steady self-care. It could mean being satisfied. It could mean getting on social security disability and getting back into hobbies and cultivating contentment. It doesn’t have to mean what society wants it to mean.
This varies in intensity and frequency across the spectrum of Schizophrenia. Common experiences are auditory and visual hallucinations, olfactory (smell) hallucinations, tactile (touch) hallucinations, thoughts and feelings of being hunted, attacked, hated, and the reasons for these feelings are what become delusions–for example, if someone feels they are being watched, the delusion isn’t just the action of being watched, but why; the government has tracked their IP address, put bugs in their phones, turned their family against them. They hear the agents outside their window, conspiring.
Other experiences may include a severe drop in drive, motivation, and emotional expression. They may have an affect that is inappropriate, that doesn’t match what they say or the atmosphere of the room. This is the reason one of the top Google questions about Schizophrenia is “why do schizophrenics laugh randomly?” They’re hinting at affect, but also possibly voices. Sometimes they say funny things and we laugh. That’s a normal reaction to something hilarious, but on the outside it seems scary, weird, and bizarre. There is no scientific consensus to whether medication is the cause of these “negative symptoms.” If we get some studies that aren’t done by researchers with severe conflicts of interest (e.g grants from pharmaceutical companies) we may get a definite answer.
When I was on medication, I was more focused and aware of my surroundings, but I was tired and had trouble caring about things. Apathy can come after a psychotic break, especially a first psychotic break, and again, there is no scientific consensus on whether this is result of the medication blockading certain synapses, damaging them, or just a result of the brain restructuring itself after the break.
For me, my voices are often but not constant, internal and external, random, mocking, encouraging, and repetitive. I also hear familiar voices, such as friends or coworkers, particularly when I’m around them. When I worked at the local library at the beginning of 2019 (yes, I tackled two jobs) I often heard the boss and the branch manager discussing me. One afternoon in particular, I was shelving some books. I heard them giggle and the boss (my supervisor) said my name, followed by words I can’t remember and the branch manager said “well, what are you going to do about her?” very loudly, and when I whipped my head around, they were talking, smiling, laughing, and I couldn’t hear them at all. They were across the library.
I took my cart to a different part of the library, felt my heart racing, and tried to look at the event objectively. They were far away, I couldn’t hear them, and maybe they weren’t taking about me. But they’d said my name. Maybe it was something good. Or maybe they hadn’t said anything at all. Every day in that place was me psychically defending my honor. I quit abruptly four months into the job.
I also hear unfamiliar voices, strangers walking down the street. One afternoon, before I was hospitalized this last time I think, my boyfriend and I were on the wharf walking back toward the street. We walked past a couple, and the man growled “you better watch your back”.
This was when I knew there were people placed on the street to intimidate and berate me. I knew some were possessed by the same entities that wanted me dead. I spun around and I asked my boyfriend, “didn’t you hear that?” Of course he didn’t, and I stopped in the middle of the walkway, blocked it really, watching the couple, and spoke loudly; “that guy just told me to watch my back. He thinks I don’t know what’s going on, but I fucking do. They don’t know who they’re messing with.”
I don’t know if my boyfriend remembers this, he may not, but I remember the fear, the anger, and the uncertainty.
Some people see creatures, demons, devils, regular people, spiders. Some people feel things crawling under their skin or in their organs, or smell strange scents. I remember smelling a lot of weird, noxious fumes not of earth and fire smoke. I always feel like someones touching me, grabbing me, trying to pull me in a different world. I feel things crawling on me frequently(not in me thankfully) and I misinterpret a lot of my body’s signals.
All of these things together can be incapacitating, terrifying, and unreal in real way. I still think back on some things and don’t believe that any of it happened, that I made it up, and that belief often has my voices calling me a liar, that I’m some kind of malingerer and my therapist knows it, my coworkers know it, and it’s going to cost me my job and my therapist is going to put me in jail.
How ironic, right?
If your friend, child, parent, or any other relative is experiencing an episode or is home, on medication, and still in the midst of psychosis frequently, panic is probably the most incorrect way to respond. The second most incorrect way to respond is feeding or attacking delusional, disorganized, or otherwise different behavior. Do not agree that the government watches your son, but don’t dismiss it either. Sometimes the underlying feelings of being watched are fear, mistrust, or anger. Address those.
Studies show that the involvement of trusted family members during someone’s hospitalization can enhance and support the person’s recovery. Show up, visit, learn what you can. My mom feared driving over the hill to the hospital I was at and so my boyfriend brought me clothes and visited. It would have been nice to have either one or both of my parents though, so they could not only see the extent of my fear and mental frailty, but also so they could get involved and be a source of comfort. It’s so hard to get them to be a source of comfort sometimes.
Most of all, respond with compassion, patience. Step outside of your world and into ours.
This post is so late (it’s 11:46 pm for me on May 14th) because I have loads of classwork and have been working full-time for the first time in my life. Adjusting to that is taking some time. And so tomorrow, later as well probably, we will cover Bipolar. If you have a story on any diagnosis and you’ like to share it here, CONTACT ME or reach me on:
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