I work hard to control the voices in my head. And even harder to be a voice for others
Remembering the pain of stigma drives me to speak up for people with mental illness
This First Person column is written by Leif Gregersen, who advocates as community educator sharing his lived experience with schizoaffective disorder and anxiety. For more information about CBC's First Person stories, please see the FAQ.
"I think we should kick the door in," came a voice from the hallway. "I think we should kill him," another voice said. "I'm tired of the noise. And besides, he ripped me off when he sold me that book."
"Fine!" I screamed. "Shoot me. Shoot me right through the door if you have the guts!"
My words were met by silence. When I looked through the peephole, there was no one there. Man, they sure can hide fast, I thought.
I didn't realize there hadn't been anyone there in the first place.
It was February 2019 and I was experiencing my worst episode of psychosis. I had been taking medication that controlled the condition and hadn't been ill in years but a change in medications tipped me over the edge once more.
For me, psychosis has several elements. There are delusions — thoughts or ideas that somehow present themselves in my mind, like thinking I'm the King of England or the president of a large company. Then come hallucinations, the false sensory inputs that often reinforce my delusions. If someone says "Hello, Leif, how are you?" the illness changes it and it will seem the person instead said "Mr. President, your limousine is outside."
Paranoia is the third element. When I heard the voices in the hallway, I became so terrified that I moved everything I had into my bedroom, covered myself with a blanket and ate canned meat on crackers. And I am susceptible to believing that even the most bizarre thoughts and ideas are real.
Like a nightmare but you can't wake up
Even when I hadn't experienced psychosis for years, I would have nightmares that I was ill again. A regular bad dream can seem a lot like a psychotic episode. The biggest difference between psychosis and nightmares is that you wake up from nightmares; for me, only time and proper medication makes psychosis go away.
We live in a world where words like "nuts," "crazy," "insane"' or "psycho"' are used to describe anything that appears extreme, where movies and television dramas depict criminals as persons with schizophrenia or other psychosis-related illnesses.
But as we're bombarded by all this, there is little public education about the true facts of mental illness. As a result, one of the hardest things becomes dealing with the fear and judgment — otherwise known as stigma — that the public has regarding the mentally ill.
Because of stigma, I have lost close friends and been fired from jobs. I was the joke of my high school when I was first diagnosed with bipolar disorder and a rift soon formed between me and some of the people I cared about most — family, friends, teachers, schoolmates and romantic prospects.
It took years to reach a place where I had gained control over my illness and the stigma that went with it, largely thanks to living in a supervised group home surrounded by people who accepted my illness, had training to deal with it, or suffered from an illness of their own.
I lived in that group home for 15 years, and found new passions in my life like writing, swimming and photography. I began to feel indestructible. I had a great doctor who, when I discussed medication changes with him, insisted that we shouldn't tinker with something that was working.
Watch | I lived in a mental hospital. Now my life is better than I could have imagined
Then he retired and in 2018 my new doctor offered me a medication that was supposed to work better and cause less side effects. For some reason, it didn't deal with my psychosis like my previous medication did.
My condition grew steadily worse. On that January morning, I went to my job at Alberta Hospital and had frightening, delusional thoughts all through the day — that people knew something was wrong with me, that I smelled horrible. I went to stay with my dad that evening but became convinced that I'd been followed by people who I thought were after me and that my dad's life was now in danger. By the end of the day, he called the police to have me taken to the Grey Nuns hospital.
I went into a secure ward for about a week until I stabilized, then remained in an open ward for another four. One day I was escorted to the gift shop where I bought a notebook that became my salvation. Alone in my room, the voices still running through my head, I wrote out short, simple poems to calm myself. These poems later became the backbone of a book I wrote about my hospital stay.
Now when I teach creative writing to patients, I encourage them to write while they are on the ward. Engaging in a creative endeavour — be it writing or drawing or putting together a model — creates a magic that helps them forget their situation and feel human again. It certainly was for me. Publishing my first book about my mental health journey was the most liberating experience of my life.
A former co-worker used to talk about the stigma around cancer — no one spoke of it, a diagnosis meant certain death and it wasn't mentioned in polite company.
But that has changed. Awareness created change.
It is my hope by raising awareness and bringing mental illness into the light, a similar change could happen.
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If you or someone you know is struggling, here's where to get help:
- Canada Suicide Prevention Service: 1-833-456-4566 (phone) | 45645 (text).
- Kids Help Phone: 1-800-668-6868 (phone), live chat counselling on the website.
- Canadian Association for Suicide Prevention: Find a 24-hour crisis centre.
- Wellness Together Canada: Free mental health support available 24/7: Phone 1-866-585-0445 | Text WELLNESS to 686868 (youth), 741741(adults)