Falsehoods, Delusions, and Lies: My Life with Schizoaffective Disorder and Anxiety
Listen to Editor in Chief Gabriel Nathan read this story:
I’ve been a psychiatric patient for basically my entire adult life, but I no longer struggle with my mental illness. I know that, if I keep a routine, eat healthy, exercise, take my medications, show up for my injections, and always remain honest with my doctor, that I can do just about anything a person without a mental illness can do. There is, however, something about mental illness over which I have much less control: the opinions and beliefs of others. Negative opinions and antiquated notions can affect people’s actions and words. This is stigma. Even as I enter middle age, I continue to struggle with stigma and its impact on my daily life.
I live with schizoaffective disorder and anxiety. I take a number of pills to stabilize my moods and prevent encroaching severe depression. I also receive bi-weekly, time-released shots of an antipsychotic medication that does the incredible job of keeping me from experiencing false sensory input; auditory and visual hallucinations and delusions. One of the first things that a person with almost any mental illness experiences is denial. This can be a form of self-stigma that is extremely detrimental. If you can’t admit—for whatever reasons—that you have an illness, and refuse treatment, as a result your illness will, in most cases, keep returning or even get worse until you can accept it and a treatment plan that will likely include medication and supervision of a team of professionals. For years, I lived in denial, even though many members of my family were stricken with illnesses, from schizophrenia to depression, and were honest with me about their problems. It must have taken more than ten years from my first adult hospitalization for me to get the correct diagnosis and admit to myself that I needed help–even though I was confined to a hospital as a fourteen-year-old kid and always had the sense that something was wrong with me.
My teenage hospital stay was actually helpful to me, I don’t know if I would have gotten through high school if it hadn’t happened. Even though it was helpful, the hospital stay didn’t convince me that I had a serious, chronic illness. I didn’t even think I was there for a mental illness and, to my knowledge, I wasn’t told my diagnosis. As a result, my own self-stigma went against any help the doctor and staff tried to give me and I stopped taking medications after leaving the hospital and didn’t follow up with any appointments made for me with a psychiatrist.
At that time, in our home, I fought tooth and nail with my dad who drank every day. Our arguments often led to violence. But I was acting out too. I was obsessed with the military and wore camouflage uniforms everywhere, carried knives and lit off firecrackers and small bombs often. I tried to tell the hospital staff I was being abused, which I believed was the root of my problem, but it must have been obvious how far from normal I was. Both my parents denied the mental and physical abuse. We had a family meeting with my psychiatrist after my first week in the hospital, and I went ballistic when my mom said the whole problem lay on my shoulders. That outburst earned me an extra week in the hospital.
I still say the hospital stay was helpful because it was my belief that I had been put in the psychiatric ward as a punishment. I thought that, if I just tried to take the extreme behavior out of my life, my parents would be happy, and I would never have to go back there. So, I got my hands on some more modern clothing, and stopped acting out, stopped carrying knives or matches, which was in no small part due to a newfound interest in girls.
My family lived in a small, closely knit community in a city named St. Albert near Edmonton from ten years before I was born until about twelve years after I left home. So many things never added up but, as I got older, and my relationship with my dad improved, he told me some interesting stories. One of them was about my mom. She, at one point, had a mental collapse/nervous breakdown and had to go to the hospital. While she was a psychiatric patient, which, even in times of recent memory, often would last for months, her best friend from our block went to visit her just once. After that, there was no more contact, not with any member of her family with any of mine, ever again, aside from a casual friendship with one of my neighbours’ daughters. All this was despite the fact that they were godparents to my brother and lived just four doors down from us.
The irony of this extremely hurtful act became apparent to me in a recent experience. I have been working for the Schizophrenia Society of Alberta for over five years. One of my tasks was to set up support groups and facilitate them at our local psychiatric hospital. I did this for a while and enjoyed helping others with my life experience, hoping by sharing what I went through could help others avoid such a long, dark path. One day a young woman came to the group. Her resemblance to our old neighbour’s daughter, the family who lived four doors down, was amazing. This was the granddaughter of the woman who had cut off contact with our family when my mom became ill. This girl’s mother and I had gone to the same schools, and had many friends in common. The similarity of this young person to my friend almost made it seem as though she had travelled through time and had become teenager again thirty years after the fact. I was so astounded to see this carbon copy of my friend, and even looked up her last name in my notes but her name didn’t match the last name of our former neighbours.
A couple of days later, my friend, the daughter of my mom’s fair-weather friend sent me an email. It read, “My daughter saw you at Alberta Hospital!” It was true, the girl I saw was the granddaughter of our old neighbour. It was a happy coincidence, to know that I was helping this friend of mine’s daughter. Sadly though, I was left with the harsh reality that it was so unfair that my departed mother, who years ago needed help, support, and friendship was shunned by the very same people who would one day have a granddaughter with a serious mental health condition. This is what stigma does.
Often, when I go into the community and give educational presentations about mental illness, I ask people if they have ever heard of our local psychiatric hospital. Rarely does more than two or three hands go up, even when I give a presentation to university nursing classes. This astounds me because the hospital was literally a small city and within Edmonton city limits. When I first went there as an adult, it had thirteen large buildings, its own volunteer fire department, a water tower, its own TV station, and no less than 5,000 staff members, many of whom lived in residences on the grounds. But people only see what they want to see, and what desires to stay hidden does.
Speaking of hidden; the hospital is very hard to access. You can’t get to it from the highway. You need to take a series of winding, decaying back roads to get there. The way I see it; this is a reminder that our society doesn’t want to admit that mental illness is a problem we can help solve, our society prefers instead to hide the problem, blame and stigmatize the victims of random genetics and chemical makeup. The message should go out that we can all work towards better lives for people with mental illness, instead of letting ignorance spread falsehoods. The evidence of these falsehoods run deep, from horror movies about “insane asylums” to, when one sees on a TV cop show that a character, most often a murderer, has it in his file that he has schizophrenia. You see it in urban planning when places where the mentally ill go to be treated, and sometimes even just warehoused, are far from the public eye.
Still, things have been improving for the mentally ill greatly since my early treatment experiences. Medications are better, there are many more programs to educate and integrate people with mental illnesses. I haven’t given up hope on humanity, but the truth is we really have a long way to go yet. Good things are happening now with regards to mental health stigma. More and more I see people who don’t have an illness show compassion to those that do. The fact that I am often asked to speak to Career and Life Management classes in high schools, and tell them what I went through, that I am able to bring the issues faced by people with lived experience out in the open to eager, compassionate young minds. There have even been times when I have told students what schizophrenia and other serious and persistent mental illnesses really are like, and then a question comes up from one of the students that makes it obvious the person asking the question is experiencing a mental health issue. When this has happened, my co-workers and I were able to help these young students find the care they needed. It often makes me think of my own teen years when I suffered from crippling depression and had no clue that this was anything abnormal that could be helped.
One of the places I most like to give presentations at is the Police Recruit Centre in Edmonton, where new officers are trained. Many of these new recruits are eager to learn what goes through the mind of a person with a mental illness. Without a doubt, in their careers, perhaps many times, they will find people in crisis, standing on a bridge in the middle of the night looking like they want to jump. Sometimes the people they are called upon to help are barricaded in their houses, stricken with paranoia. Then there are the really sad cases where the police are contacted, but arrive too late to help someone from dying by suicide. The police are the first ones called in these situations, and not all of them are intuitive enough or trained specifically in how to give compassionate, informed assistance.
Years ago, I was living in Vancouver. This was a time when I hadn’t been on medications for a while. I was trying hard to manage my life but hallucinations that fed delusional thoughts took over my mind. In that vulnerable state, it became very easy for me to believe that I was transported to the moon and that I had somehow travelled forward in time. But a part of me knew things were going wrong. A part of me understood this invented reality wasn’t true, and that part of me wanted to get help. Even though I had been in hospitals and psychiatric wards frequently prior to this moment, I had no idea how to get help for what I was experiencing. Ashamed and afraid of being labelled, I called the police and told them I thought someone had put hallucinogenic drugs in my food. That was the only lie I could come up with that made it sound like my illness wasn’t my fault. An officer came, who was really kind, and brought me to the local hospital where I received the treatment I so desperately needed.
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This wasn’t the only time I saw police as a welcome way out of a seriously bad mental health situation. Two years ago, I was given a medication that didn’t do anything for my psychosis. I was staying at my dad’s apartment, hoping that by getting away from my own building, I would have less voices or delusions. My thoughts were totally scrambled. After my dad went to sleep, I started having auditory hallucinations that people from my own apartment building were there at my dad’s place and came to kill us. I went through a series of screaming fits, then my dad called the police. One of the officers that arrived knew me from presenting to his class, and I was able to communicate on a much more even footing with him. Again, I got the help I needed.
Things didn’t always work out that way. Around 20 years ago, I had the worst mental collapse of my life. I had reduced the dosage of one of my medications without talking to my doctor and literally went out of my mind in slow degrees. One day as I left my apartment, I forget why, but I had a sudden hallucination that there was a bomb planted in my building. It happened to coincide with a time when the lock on our front door malfunctioned and there was no way to open it. I went into a panic and the police were called. After running around and trying to warn people the building was going to blow up, the police came, got me calmed down, and sat me down in the office of the apartment complex I lived in. I was there for a while, the police and ambulance people must have been trying to figure out their best course of action, and a cop was assigned to keep an eye on me. He didn’t stand in the room with me and make small talk to calm me down, he stood in another room saying nothing, staring at me. I even got up and walked over to him and put my hand out to shake his and try and talk to him, the silence in that room was deafening. But he just stood there, looking at me with contempt and said, “I don’t shake hands.” It was extremely dehumanizing.
There have been a few incidents in my life where the police could have reacted better. I never saw the recruits I presented to in this light. Over the years, as the only job for a while I could hold down was as a security guard, I regularly interacted with the police. So often it seems that, if you call them, their first instinct is to look for a reason to arrest you. Then, a certain percentage of them will look for ways to insult and belittle you. As a marginalized person, it now takes a very serious situation for me to see the need to call the police. These are examples of how ignorance can lead to stigma, which is toxic in all forms.
Once, when I was still in high school, just having been released from my first admission to the psychiatric hospital, I was swimming in a sea of confusion brought on by psychosis that I had little control over. I got into a fight with a classmate, and the police were called. I would have gone with them willingly, but when they escorted me out of the school office, there were all of the people I had gone to school with for the past four years, lined up to watch me be escorted out of school. It really hurt because I had never been, and wasn’t then, any kind of criminal and I knew there would be much talk around the school about me being ejected from the place I most loved being at. I decided that if the cops were going to put on a show, and make an example of me, I would reply with a show of my own. I grabbed the cop to the left of me, pushed him into the wall, then grabbed the coat of the cop to the right of me and swung him, smashing him into the first cop. I screamed and yelled all the way down the hall as the struggling continued, while my classmates stood silently in judgment. I was taken to the local hospital, given a heavy sedative, and got knocked around a fair bit while being brought back to the lockup ward in the larger hospital in the outskirts of Edmonton. My whole academic life and hope of any type of social status was completely destroyed in one morning. If I were to meet the cops who arrested me again, I would actually thank them because I was never charged with assaulting them, which really would have messed up my life. In the end, the sad truth was that my actions caused much more stigma in the school I went to, and it was so hard for me to understand because I was so sick that I felt the things I did were right and justified.
When I go to the Edmonton Police Recruit Centre, along with advice on de-escalating, and trying to better understand those who suffer from mental illness, I remind the young officers that they too are prone to a plethora of mental health problems—from alcoholism to PTSD, and the rates of homeless former police is astounding, and their rates of dying by suicide is far greater than the general public. In fact, police in Canada have the highest suicide rates of any profession. It’s not hard to imagine, when you take a look at how they are in the thick of every bad thing happening in their jurisdiction. Saying these plain facts really helps get my points across, mental illness isn’t a street person problem or a problem for the weak or poor. It is a problem that can strike anyone in any group, drastically, unexpectedly, and often can have self-destructive outcomes. I was greatly encouraged one day as I was walking into a hospital and, a police officer was walking out. He stopped me and told me:
“I just wanted to say that what you taught me really helped. I have had two mental health calls just today and knowing what I learned from you was invaluable.”
The truth is, I can’t stop stigma. I may have written and published numerous books and articles, but I am just one voice, albeit a loud one. What I personally feel needs to happen to put a stop to the unfair segregation and discrimination against people with mental health issues in our world is for more people to reach out. For more people to find a person who suffers from poor mental health and help them, accept them, face stigma head-on. There was a young man who went to the mental health clinic where I get my bi-weekly injections, and somewhere in the course of his recovery he slipped through the cracks. I see him around the city often, even on cold, frigid days, asking people for change. He is dirty, scary looking, and at times incoherent. There isn’t really much I can give him that will help, but I do give him respect. I talk to him, find out how he is eating, where he is staying.
If he ever asked, I would likely buy him just about anything he needed. When I can afford it, I give him $20. Even if he went and bought beer with it, I think to myself that at least he didn’t have to beg, borrow, or steal the money. For a little while he could avoid dehumanizing himself to just feel okay for a short time. I honestly feel I owe this young man the money and that it is up to him to decide what to spend it on. He is out on the streets and off his medication because at some juncture, he was stigmatized and thrown out of his home. Or, he possibly started to lose mental functioning to the point where he couldn’t take care of himself and no one stepped in. Maybe he had a family that just couldn’t help him anymore. I am a part of the society that has marginalized him. It is said that when a person goes to prison for life, what that means is that every single segment of society has failed him his whole life every step of the way. I like to think that I am the friend this young man needs, and I am happy to do what I can to help.
There is another reason that I often give this guy money. Due to the fact that he has a mental illness, many people shun him, ignore him. These are the same people who prefer to associate with those who don’t have such problems, never seeing their own ignorance as part of the stigmatizing equation. When I go into a restaurant, I always tip my server. Just about everyone does the same. We may ask ourselves, will that person be able to afford food and rent if everyone stops tipping her? I would never tip someone and then tell them, “No going to the casino with this money,” or, “I better not see you spending this in the bar.” The money is theirs, advice isn’t needed. This is how we should look at giving to mentally ill people when they ask for spare change, and when we consider donating to charities that help better the lives of the mentally ill.
I have learned not to self-stigmatize. Whenever I meet people, whenever I run a class or have a book signing, I try to be totally honest about having a mental illness. I openly discuss having experienced delusions and paranoia. Doing this has paid me back in many ways. I have met a lot of people who admire and respect me because I try to use my story to help others avoid my mistakes. I also run into a lot of people who tell me that they have a mental illness, or a close family member who does. When this happens, I know I have met someone I can help, to whom I can talk honestly and openly about resources and solutions. What I often try to accomplish in my writing and public speaking is to convince my audience that people who are mentally ill carry a heavy weight of suffering. I want my words to help promote the cause of stigma busting. When we re-humanize individuals with mental health issues, it goes such a long way.
To conclude on a positive thought: I have a friend who tells me that, decades ago, cancer was highly stigmatized. No one talked about it or mentioned it or, if they did, it was in whispers in a corner somewhere. Over time, more people began to talk about cancer and early detection increased, as did funding for treatment and research. Many lives were saved and the face of cancer is totally different now. This is something I believe can happen with mental illness. We all just need to feel safe enough to open up about it, and speak about it in a voice far above a whisper.