A mans fight with mental illness from schizophrenia

The War On Stigma Can Be Won

EDMONTON, Canada — “Why don’t you just go home, you freak?”

It was the toughest kid in school, maybe the toughest guy I had ever met, who yelled that at me from the hallway in front of my class. Star football player and future police officer, Cody was someone no one wanted to oppose in anything. He had seen me from the hallway and had heard the gossip, and he felt compelled to belittle me from a vantage point where I couldn’t react or even hide.

This was a memory so vivid I remember it now clearly even 31 years later. It was the day after I had been released from my first visit to the psychiatric hospital. I experienced a lot of stigma from classmates, and it didn’t help that I was in a state of confused emotions and delusional thoughts lit on fire because of hallucinations. Stigma is defined as a mark of disgrace towards a certain quality or characteristic. I was experiencing self-stigma. I felt like a criminal; only my crime was bad genes. Stigma is something that is often hidden, disguised among words that sound like good intentions.

“You don’t need those pills. You’re not crazy,” people I had only known a short time might say.

“This illness you talk about isn’t a reason to get disability benefits. You’re just lazy,” a young woman who was a romantic interest and a close friend told me.

“But you aren’t schizophrenic,” my cousin’s wife, Janice, said once.

When I hear some of these phrases, I try to educate the person if I can.

“Crazy isn’t a helpful definition of a genetic condition that is well controlled by medications,” I might say.

“I have worked all my life. But because of my mental health condition and the things I need to do to keep it in check, I have found part-time is the best option,” is another way to put it.

“No one is a ‘schizophrenic’ but there are persons with schizophrenia who are people first,” I sometimes say.

Sometimes, my words can be helpful, and a lot of people are open to what I have to say about reducing stigma by using more appropriate language. But a lot of the stigma goes on in people who never voice their beliefs. It comes in friends who look for excuses to cut you out of their life, from employers and teachers who break discrimination laws by treating people with mental illnesses differently than those who fit in their world view of how a normal person should be. I think it can be boiled down to just simply fear and ignorance.

As a young boy, I once came home to see an ambulance parked in our back yard and never really understood how she could have tried to take her own life when she had a loving family. I would later learn that depression can be a debilitating and even crippling illness that can leave people with no hope.

the author writes

Sadly, as I mentioned before, stigma also comes from within. I have had times when I was off medications, on reduced medications or on proper medications that weren’t helping me, and I went into psychosis. This meant I was experiencing a split or a break from reality characterized by delusional thoughts, hallucinations that reinforced these false ideas, and a general susceptibility to believe things that just about anyone — including me when I was well — would think were preposterous. These events can be so embarrassing and unsettling to remember later that sometimes the stigma comes from within in the form of self-stigma. Often, people who have gone through this sort of embarrassment and shame will isolate themselves or turn to drugs or alcohol as a way to self-medicate.

I experienced a lot of self-stigma: I think even more so because there was  a depressive side to my diagnosis. I was very ashamed when I was first hospitalized while still in high school and started to slip into heavy drinking to combat my depression, which, in turn, often made me go to the other extreme of having manic episodes. I would drink, and I would run long distances, running for endless miles, feeling that, somehow, I needed to pay penance for all the bad I had done while I was sick. In a short space of time, I destroyed my knees from excessive running and now added a permanent physical disability to my psychiatric one.

I knew a woman who was mother to a young man who had schizophrenia who died by suicide. She is my hero. Despite her loss, she volunteers to give talks to young people about the illness that claimed her son’s life. She told me once that years ago, cancer was a subject that had a lot of stigma associated with it. At the time, cancer almost always meant death. It was a dark subject you didn’t mention in polite company. Then, things began to change, and people talked about cancer more. Suddenly, people were getting more screenings done; money was raised for treatment and research. Lowering the stigma saved lives. This is something that I know can happen with stigma towards mental illness.

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Growing up, my mom had a mental illness. Sadly, it is something that happened to many on her side of the family, including my great-grandmother, my grandmother, my uncle and aunt on my mother’s side, as well as my uncle’s two children, my cousins, and my brother and me. Her guilt and shame, added with depression led her to attempt suicide more than once. As a young boy, I once came home to see an ambulance parked in our back yard and never really understood how she could have tried to take her own life when she had a loving family. I would later learn that depression can be a debilitating and even crippling illness that can leave people with no hope.

Before I was born, my parents lived in the townhouse I grew up in, and my mom was best friends with a woman a couple of doors down from us. Then there was an incident where my mom had to be taken to a psychiatric ward for treatment, and, after one visit, her friend never spoke to her again, despite living so close for over 30 years. I don’t like it — and I don’t condone it — but I can understand that in those times back in the 1960s, mental health was a topic that scared many people. It was a lot more common to see people put in places often called asylums instead of hospitals where they spent the rest of their lives. There was just so much ignorance that I can see how it would be difficult to go to visit someone in a psychiatric ward.

Two years ago, along with giving community presentations to schools and other groups, I was assigned the job of setting up a support group in our local psychiatric hospital. One day, I was facilitating this group, and there was a young woman who had an uncanny resemblance to someone who, many years ago, was my very first friend. My friend and I would play together every day around the neighborhood and had gone to all the same schools in our youth. I looked at my attendance list, and the last name was different so I dismissed it as chance. Then a couple of days later I got a message on my computer from my old friend.

“My daughter saw you at the hospital!,” it read. 

It was comforting to know that I was helping someone who was related to an old friend, and she and I met up. I gave her some of the books I have written on the subject of my life experience with mental illness. The real surprise came when I told my dad about this chance encounter, and he told me this girl I had bumped into in the hospital was the granddaughter of the woman who had once been my mom’s best friend.

It wasn’t all that surprising that this coincidence happened. Mental illness is far more rampant than most people realize. According to the National Institute for Mental Health in 2019, 51.5 million people in the US — or 20.6% of the population — had a mental illness.

Stigma directed at me was at its worst when I was kicked out of high school. Something I am so grateful for is that even though I fought with the constables who came to my school to take me to the hospital, they understood I had a mental illness and didn’t charge me or take me to jail. They brought me to a psychiatric hospital.

In my work as a community education presenter of information about schizophrenia, this can be hard to get across to the people I speak to. What it means is that someone close to them, among family or friends or even themselves, likely have or have experienced a mental illness. I also try to talk about what I went through in my journey to recovery, which included much stigma busting.

But a thousand times over I wished they hadn’t taken me out of school in handcuffs while all of my schoolmates were lined up to watch. I knew all of these people would now fear me and shun me, especially this one young woman in the crowd I had a crush on. I would never get a chance to live that experience down. And so, I fought the police all the way to the exit. I often wonder if they hadn’t given me that special treatment as a person with a mental illness if a criminal record would have ruined my adult life or a jail cell could have ruined me in so many other ways.

Police officers themselves are at high risk of mental health issues…they are still subject to above-average rates of suicide, alcoholism, depression and post-traumatic stress disorder.

the author writes

For many reasons, I am often asked to give presentations to the recruit class of the Edmonton Police Service. On one hand, it is essential to get across such information — like how to deal with a person experiencing psychosis, for example, by reducing distractions, having just one person speak, speaking to actions and behavior rather than trying to convince the person they are having false ideas. But I see it as my duty to remind these fresh young faces that police officers themselves are at high risk of mental health issues.

While it has been debunked that police have the highest suicide rate of any profession, they are still subject to above-average rates of suicide, alcoholism, depression and post-traumatic stress disorder. Often these illnesses go untreated and are even aggravated because it can be much harder for police to reach out for help, another form of self-stigma.

One of the major issues that propagates stigmatizing myths is false impressions from media. Crime dramas where a violent offender is labeled as having a mental illness such as schizophrenia, and even news stories that emphasize a person’s mental health history as a factor in violent crimes don’t pass the acid test. Public information from the American Psychiatric Association has determined that if a person with a mental illness is in treatment and complying with their treatment team, mostly taking medications and advice, they are no more likely to commit a violent act than the general population.

There have been studies to show that, when you include all people with mental illnesses, the rates of violence are three to five times higher than the general public, but this rate is similar to how much more violent men are than women, not to mention that people with alcohol and substance abuse issues have far higher rates of violence than those with mental illnesses. Personal experience and education have taught me that people with mental illnesses are much more likely to be victims of violence than perpetrators.

The questions remain: How does our society change the way we look at mental illness? How can we reduce stigma and self-stigma? Progress is being made, first of all by programs such as the Wellness Recovery Action Plan, or WRAP — a growing movement teaching people how to re-humanize themselves and take back control of their treatment, with regards to mental health and addiction.

One of the key elements of this program is that, after taking the course, you are given the option of further training to allow you to teach this program to others. Any form of empowerment and employment of people with lived experience like this helps fight stigma. I also have to mention the Schizophrenia Society because it does so much to reach out and not only support, employ and counsel people who live with psychosis related disorders, but it also gives incredible presentations that fight stigma and increase awareness to nursing and psychiatric nursing classes, medical school professional groups, small colleges that train health care aides and so much more.

Having time set aside to promote and to talk about mental health — like mental health week which runs in Canada, Australia, and the UK — is another positive step. Another way of changing how we look at people with mental health issues is by changing the language of mental illness. The term “bipolar” has now replaced the more stigmatizing “manic-depressive,” and terms like “died by suicide” as opposed to “committed suicide” and “person with schizophrenia” rather than “schizophrenic” are steps forward as well.

I feel the most beneficial thing would be for a unified body of concerned people to be formed, including mental health professionals, family members and people with lived experience of mental illness. This body could lay out goals and mental health information to be included in school curricula. Another goal could be promoting general awareness and mental health screening for people of all ages. There could even be global targets of lowering suicide rates and a “charter of rights” made for the mentally ill.

Mental health stigma is based on fear of the unknown and the unpredictable. It affects not only the surprisingly large segment of the population with mental health issues, but it also affects their families, friends and colleagues. It affects everyone. Since the time my mom was first diagnosed, she struggled all of her life to deal with not just her issues, but the way others perceived her.

Often, people who have gone through this sort of embarrassment and shame will isolate themselves or turn to drugs or alcohol as a way to self-medicate.

the author writes

Things have improved since, but not enough for me to have been able to get the treatment I needed before my illness became disabling. We are fighting a war where the wounds don’t show, and the enemy, which is ignorance, can’t be seen. All of us need to take another look at the homeless person they see, dirty and bedraggled, shouting at no one. We need to take another look at people we used to avoid, make fun of, or ostracized because they were prone to depression, or were different.

We also need to see a lot of things differently like adolescent crime, people who self-medicate with drugs or alcohol who are hiding a mountain of anxiety, paranoia or even psychosis. And those with lived experience of mental health issues need to see ourselves as a person with something to contribute to others — the ability to ease suffering — and be full members of our societies and our communities.

If you or a loved one are dealing with a mental illness, please reach out to the National Alliance on Mental Illness for education and support. Their website is at www.nami.org or if you are in crisis, phone the NAMI helpline at 1-800-950-NAMI or the NAMI suicide prevention helpline at 1(800)273-8255

In Canada, for education and support, contact the Canadian Mental Health Association. Their website is www.cmha.ca they can be reached by phone in Toronto at 1(416)646-5557 or by email at: info@cmha.ca

For crisis services in Canada, and the suicide prevention helpline, call 1(833)456-4566 to speak to someone in English or French or visit www.crisisservicescanada.ca 

Leif Gregersen is a writer, teacher and public speaker living with a psychiatric disability in northern Canada. He has written and published 11 books, including 3 memoirs about his life with mental illness. Leif's books are available through Amazon.

Leif Gregersen is a writer, teacher and public speaker living with a psychiatric disability in northern Canada. He has written and published 11 books, including 3 memoirs about his life with mental illness. Leif's books are available through Amazon.

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