Hey there! My name’s Cas. I’m the partner of an amazing human, the proud parent of 2 dogs and 3 rats, an astrologer, an artist, and a budding musician. I’m working on growing as a disability and lgbt2q activist.
I also have unmedicated schizoaffective disorder, bipolar type.
Writing this article was something I felt as though I must write. As I find more self-awareness, I become more aware of the growing stigma towards those with schizophrenia, people on the schizo-spectrum, and those who struggle with psychosis (having to do with mood disorders, health conditions, or otherwise). I’ve found myself needing to be my own ally in these situations, outting myself as an individual with psychosis. It’s been tiring, but the only way that this stigma around myself and people like me will be broken is if I speak for myself and make others feel safer to voice their experiences.
With that in mind, no two people with psychosis experience the exact same hallucinations, delusions, or paranoid thinking. My experiences are my own and are not sized to specifically fit the experience of someone else.
The second extremely important point that I want caretakers, friends, and family of a loved one living with psychosis to consider is that we still have our own autonomy. It does not matter how far removed we are from current reality; we are still people with our own thoughts and feelings. We all have different things that we need when we are in a position of not being able to be or feel present. It doesn’t matter if I think I’m the second coming of Christ; I still want to be treated with respect and without judgement. I want safe spaces to exist in, and I want safe people to talk to, just the same as if I were fully immersed in reality and at home in my own body.
Many people I’ve spoken to with a limited knowledge of psychosis (which turns out is mostly everyone who hasn’t had to deal with it personally or doesn’t know anyone with struggling with it) think that being psychotic means hearing voices, delusions of grandeur, and zero self-awareness on the part of the person experiencing it. They also think it means that we’re more unpredictable and violent, serial killers and school shooters, political dictators, and manipulative people to be avoided at all cost.
The bottom line is, we make people very uncomfortable by merely existing. If we experience hallucinations and/or delusional thinking in public, we are often marked as crazy, psycho, or on hard drugs. People don’t know what to do with us. I’ve had reactions range from people filming me and laughing at me, calling the cops on me, or approaching me to tell me I need help and that they would take me to the nearest shelter or psych ward. We inconvenience non-psychotic people to the extent of wanting us locked away, not caring too much what happens to us once we’re in police custody or institutionalized. Out of sight, out of mind.
Types of Hallucinations:
Visual Hallucinations - seeing something that doesn’t exist, or seeing something that exists but incorrectly.
Auditory Hallucinations - Thought to be the most hallmark hallucination of those experiencing psychosis by medical professionals. Can present as a constant buzzing or humming noise, whispers, muffled talking, and laughing. Voices may say complimentary, neutral, or critical words and are often a running commentary on the person who is experiencing the hallucination’s life or actions. Command hallucinations may occur, but are more rare. These can be extremely distressing to experience, but many who experience them learn to live with the voices.
Olfactory Hallucination - Smelling Odours that do not exist. For example, smelling gas or propane followed by the fear of an explosion. Usually present as unpleasant odours, such as vomit, urine, feces, smoke or rotting flesh.
Tactile Hallucinations - A sense that one is being touched when they are not. The most common complaint is feeling as though bugs are crawling all over the skin.
Gustatory Hallucination - Tasting something that is not present
General Somatic Hallucination - When a person experiences the sensations of being severely hurt, such as decapitation of limbs, disembowelment, and mutilation. Patients with psychosis have described animals trying to take over the body, such as snakes or bugs entering the ears, mouth, eyes, and stomach.
What Not to do:
Do not call the police when someone is experiencing psychosis. We already experience increased police violence especially if we are racialized or otherwise marginalized
Do not decide anything for us when we are experiencing psychosis or deepening delusional thinking. You do not know how your decisions will affect us in the long run.
Do not treat us like we’re not there when you’re talking about us, assuming that we are not self-aware enough to hear what you’re saying
Do not assume that our needs are a one-size-fits-all situation
Do not argue with us when we are experiencing delusional thinking or try to goad us into institutionalization. This leads to greater mistrust. There are many gaps making healthcare hard to access for us, and in most cases we are turned away or given medication without a follow up.
Do not judge us.
Do not take advantage of us when we are removed from reality. Do not manipulate us into seeking help when we are not ready to seek help
Do not become friends with us without setting healthy boundaries, and then get angry with us when we have a difficult time understanding what you need.
If you see us on the streets, do not try and help us if you’re unequipped to, or if you are unable to actively listen to what we need
Do not validate our delusions by telling us that we’re spiritually advanced or blessed, and can see things others can’t.
Please Do This Instead:
When we seem to be lucid and more self-aware, talk to us about a self-care plan. Plan ahead for the next time we may be in crisis to help with a smoother transition.
If our self-care plan includes reaching out to third-parties for help (our general practitioner, our therapist, our close family and friends) know who to call and have their numbers handy.
Be aware of the routines we follow when we’re well. Do your best to help implement those schedules when we’re unwell.
If you’re unsure what to do, help us with making our living space more breathable. If we’re unwell, it will most likely be chaos. Help us cook and meal prep, so we can focus on the things necessary for our healing without feeling smothered.
Do your research. It shouldn’t be up to us to educate everyone on how to treat us with basic human decency.
Understand how our other identities intersect and correlate with our psychosis.
Treat us in the same way you do when we’re lucid. Treating us like toddlers breaks the trust we’ve taken a long time to form. Remember that we are still people with our own needs and feelings.
Give us a non judgemental and safe space to exist and speak about our experiences
Step in if you hear someone using negative stereotypes about people with psychosis, especially if those stereotypes pathologize us or paint us as crazy or violent.
Remove ableist language from your vocabulary and understand that we have the ability to self-identify as crazy or psycho without hearing these terms used in derogatory ways against us.
**note: please actively listen to your loved one with psychosis. Some language in these resources tends to err on the side of outdated, and as stated above, there are many different ways that a person can hallucinate or experience psychosis
Psych Forums (https://www.psychforums.com/)
Schizophrenia Forums (https://forum.schizophrenia.com/)
Understanding Psychosis: Resources and Recovery (https://sardaa.org/wp-content/uploads/2015/08/Nami_Understanding_Psychosis_Booklet.pdf)
CBT for Psychotic Symptoms (https://www.cci.health.wa.gov.au/~/media/cci/mental%20health%20professionals/therapist%20manuals/psychotic%20symptoms/cbt%20for%20psychotic%20symptoms%20therapist%20manual.pdf)
DWP, Dealing With Psychosis Toolkit (https://www.earlypsychosis.ca/pages/resources/downloads)
What is Schizoaffective Disorder? (https://www.mirecc.va.gov/visn22/Schizoaffective_Disorder_Veteran_and_Family_Handout.pdf)
NAMI Facts About Schizophrenia (https://www.nami.org/Press-Media/Press-Releases/1998/Facts-On-Schizophrenia)
NIHM Publications On Psychosis (https://www.nimh.nih.gov/health/publications/schizophrenia-listing.shtml)
60 Coping Strategies for Hallucinations (https://southbayprojectresourcedotorg.files.wordpress.com/2015/09/list-of-60-coping-strategies-for-hallucinations.pdf)
Dealing With Psychosis; Full Workbook (http://www.heretohelp.bc.ca/sites/default/files/dwp-full-workbook.pdf)
The Do’s and Don’ts of Helping Someone in Psychosis (https://www.rtor.org/2016/05/12/the-dos-and-donts-of-helping-a-family-member-in-psychosis/)
Psychosis First Aid Guidelines for Loved Ones (https://psych.ucsf.edu/sites/psych.ucsf.edu/files/PREP%20MH%20First%20Aid.pdf)
Dealing With Unusual Thoughts and Behaviours (https://www.ncl.ac.uk/students/wellbeing/assets/documents/DealingwithUnusualThoughtsandBehavioursFactsheet.pdf)
Steps for Working Through Psychosis (https://www.bcss.org/support/how-do-i-get-help-for-my-loved-one/steps-working-delusions/)
My experiences with psychosis are extremely nuanced and play off of my other mental health issues, such as my c-PTSD. To others, I appear lucid most of the time. I have learned to live with voices and hallucinations, and for the most part I have learned to differentiate hallucinations from reality once I have time to process what has happened and have conversations with my Safe People. I have had to dedicate my time to working through a lot of my c-PTSD and stress that triggers my symptoms, but it didn’t always use to be this way.
The first time my mom kicked me out, it was because she didn’t know how to handle me.
She had started a relationship with an abusive man who terrified me when he drank. He was at least 6 feet and all muscle. It wasn’t rare that I witnessed abuse towards her and my younger siblings by his hands, and sexual assault towards my mom late at night while I tried to sleep after he had had one too many.
The stress of it caused something to stir in me. I isolated myself save for my one best friend who I told everything to. I started to hallucinate sexual and physical assault that wasn’t happening. I eavesdropped into their conversations and intervened when no intervention was necessary, trying to keep my mother safe. Bringing nothing but a backpack full of water bottles and a bible, I ran away for a night believing that I only needed the word of the lord to sustain me. I was failing in school and went through periods of eating my lunch alone in the bathroom or the library, hoping nobody would bother me.
Sleep-deprived and unemotive, I started hallucinating bugs in my bed at night, crawling all over my skin and entering my ears and mouth during school, and snuck downstairs when I returned home each evening to steal my moms boyfriends alcohol, weed and cigarettes which he hid in the high rafters of our house. I started skipping school when before my attendance record had been clean, and my grades began to slip despite a general understanding of the coursework.
Unsure of what to do besides bringing me to christian therapy which wasn’t working and reading countless books titled things like “Dealing with a Difficult Child,” my mom decided it was time to send me to Northern Quebec to live with my dad. I had only met him a handful of times and all I knew was that he was incarcerated when I was young for petty crime such as car theft, as well as bigger things such as aggravated assault; he had threatened to drown my mom for things like cutting her hair and accepting help with food security, and had stalked me at a distance for 7 years before I had met him. He had recently tried to abduct my younger brother and forcefully bring him to his apartment in Quebec before the cops intervened before I moved in.
I was terrified of moving in with him. The paranoia he gave me after he had stalked me and abducted my brother was sky-high, and manifested in delusions of being watched constantly.
I wasn’t sure how long she wanted me to stay with him, and it ended up being 3 months until I begged her to come home. He had made my hallucinations worse, telling me that he could enter my dreams if I called him, telling me that television personalities were all aliens and how everyone on his side of the family had psychic powers. I started believing that I was something called a starseed, an alien sent to this earth to awaken everyone from the human condition. I believed I was empathetic and could read the emotions of others. He would leave drugs and cigarettes out for me as a test, to see if I took them (which I did). I was soon dependant more than I had been before, and this made my psychosis worse.
While in a relationship with my first boyfriend I experienced intense paranoia that he was trying to take my money and poison me. This was not a far stretch at the time; he had waited until my 18th birthday to invite me to sleep over (he was 24 at the time), knowing full well that I was mentally unwell and on a steady binge of drugs and alcohol. He manipulated me in ways that worked; I was engaging in non-consensual sex with him, frequent late night benders where he would leave me in unfamiliar houses with people who took advantage of the fact that I was passed out to have their way with me in payment for drugs I thought were free.
When my mom kicked me out for the second time because I came out as transgender, he was the only one I could turn to. Most of my old friends had distanced themselves from me and I was having a hard time finding my community. He cleared out a drawer for me and I moved in, throwing most of the clothes I had in garbage bags and travelled by bus to settle in.
I dropped out of my final year of highschool and started isolating myself from everyone besides my partner at the time and a good friend who had also dropped out of highschool. She was the least judgemental person I had in my life, regardless of the fact that we both enabled each other. I became dependant on her and received free alcohol, drugs, and cigarettes since she was dealing to support herself. She lived with her partner at the time in a studio apartment and I would spend late nights with her and her friends, doing hot-knives, drinking as much alcohol as we could stomach and smoking cigarettes.
One early morning I woke up in a cold sweat, grabbed my things from my boyfriends house, and ran over to her house. Wide-eyed, I asked if I could speak with her privately. We locked ourselves in the small bathroom and split a cigarette. I told her my now-ex boyfriend had stolen money from me and tried to explain a lot of the things that had happened to me while living with him. She rubbed my back and told me that we would figure it out together.
My life continued like this for a long while. We eventually got a place together; me, her and her boyfriend. We slept in the same mattress on the floor, woke up together, did drugs and drank, frequented the local bars. We went through homelessness together which is when I experienced a newfound oxy, coke, and ritalin addiction, but I was so grateful to have someone by my side who understood and looked out for me. I thought love meant leaving me a line on the back of the toilet in the washroom of the Celtic Pub.
It wasn’t all bad, it was all we knew. I leaned on her for support, up until another large bout of paranoia. I was afraid she was getting sick of me, and I grew more and more irritated with having to share such close quarters with her. I felt myself isolating, not leaving our room unless I needed booze, drugs, or cigarettes. The bugs returned, as well as the delusion I was being slowly poisoned. Her boyfriend started lecturing me and yelling at me, demanding I pay them more rent since I wasn’t on the lease. My *inner voice* got loud again, telling me that the problems I was experiencing were my own fault and that I should just leave and isolate so nobody could find me or be burdened by my dependency. The voice wouldn’t shut up. I packed up and left, and haven’t seen her since besides a brief run-in, moving back in with my mom.
In the meantime I’ve been through multiple unhelpful and unsuccessful hospitalizations, although I got to know myself while I was being institutionalized. I learned how to stand on my own two feet, learned where my resources, community, and safe spaces were. I’ve been trying my best to unlearn harmful behaviour that I’ve been using as a coping mechanism for survival and replace these behaviours with healthier behaviour. My love of Evolutionary Astrology acts as harm reduction from being groomed through Christianity as a child and quenches my thirst for spirituality, and gives me the language to work through my trauma in terminology I understand. Learning to make music and art has been a life-saving coping mechanism for when I need to express myself in a healthy way. Understanding that I need a schedule to keep on top of hygiene, to make sure I eat 3 meals a day, and to regulate my sleep has been crucial.
Fast forward to now, and I’m healing and thriving, in the healthiest relationship I’ve ever experienced with my partner of 5 years (although we both had a lot of learning and growing to do along the way). I’m in stable housing, and am fostering friendships with people that I know are good for me and are open to talking about boundaries and lend in mutual support. Learning more about mental health and community care has saved me a huge amount of heartache. Setting boundaries has gotten easier and I’m learning to articulate what I want and need, and in turn listening more closely to the boundaries of others. I still have the same symptoms of psychosis, but am learning what the early signs of an episode are and am able to practice greater self-awareness while being aware of my triggers. To top it all off, I have been drug free for 3 years and counting, although I struggle with relapses when it comes to my alcohol addiction. Reminding myself that progress is not linear and to expect periods of remission has saved me from fully relapsing without looking back many times.
The point of me sharing my story isn’t to make anyone feel bad or to milk the sympathy of others, but rather to highlight the ways in which I needed help as a young teenager going through terrifying experiences that drove me to drink and do drugs, and otherwise engage in unhealthy behaviour that usually triggers psychotic episodes. Throughout my life there was almost no awareness around psychosis. Everyone around me was convinced that I only suffered depression, as most of the mental health awareness they have been exposed to was solely around anxiety and depression. In order to better understand our peers who struggle with psychosis, we must make a greater attempt to educate and spread awareness about how life actually plays out for us, and the things we need to make instability preventable.
Mental health is a housing and homelessness issue, it’s a poverty issue, it’s an addictions issue, and it’s an accessible healthcare issue. If we focus on making these things better and making stability accessible in the ways that we can, there is no cap on the progress we can make as a united and powerful community.
Understanding Your Schizophrenia Illness (https://b-ok.cc/book/1100572/5f7515)
CBT for Psychosis (https://b-ok.cc/book/2747755/4bf7e3)
Psychosis, Trauma, and Dissociation; Emerging Perspectives on Severe Psychopathology (https://b-ok.cc/book/2155555/c8bdac)
When the Sun Bursts: The Enigma is Schizophrenia (https://b-ok.cc/book/2613607/6bd80f)
Cognitive Therapy of Schizophrenia (https://b-ok.cc/book/543737/22537c)
Living Outside of Mental Illness: Qualitative Studies of Recovery in Schizophrenia (https://b-ok.cc/book/691881/6cc6c5)
Trauma and Psychosis: New Directions for Theory and Therapy (https://b-ok.cc/book/700137/744494)
Schizoaffective Disorders: International Perspectives on Understanding Intervention and Rehabilitation (https://b-ok.cc/book/825805/69b2d6)
Recovered, Not Cured: A Journey Through Schizophrenia (https://b-ok.cc/book/836802/b8a373)