It was a typical day at work for me as a community education presenter for the Schizophrenia Society of Alberta. My boss, Tanya, led the group through a PowerPoint presentation loaded with facts about schizophrenia, then it was time for me to share my lived experience. After my talk, we opened the floor for questions. One person put his hand up and asked:

“When did you first learn you were a schizophrenic?” I looked at Tanya, who had just explained the importance of seeing a person, not their illness, and replied:

“Actually, the correct term is ‘person with schizophrenia.’ When you call someone a schizophrenic, it is labelling them as being an illness. When you say ‘person with schizophrenia,’ you are saying that they are a person first.” 

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Tanya, visibly annoyed by the question, chimed in: “It’s just like calling someone a cancer or calling them an influenza.” It is a common part of our job to correct people almost everywhere we give presentations.

The language we use to define mental illness is critical. I know if I go by my exact diagnosis, saying I have schizoaffective disorder, bipolar subtype, with anxiety, I will get a great deal more understanding and respect than if I say I have a rare form of schizophrenia. It is even important not to capitalize the word schizophrenia because it is a disease, not a proper name of a specific person or thing. If I tell anyone with medical training my diagnosis, they will understand I am on top of my mental health situation. Using that wording is one way I protect myself from the stigma surrounding mental illness in general.

I can understand why people misuse terms that refer to mental illness. It is generally accepted that if traffic is very busy and people are doing irregular and aggressive things to push their way through it, that it will be described as “crazy traffic.” A busy evening in a restaurant can be described as an “insane supper rush.” The list goes on and on. The truth is though, that many people in history, from Abraham Lincoln to Winston Churchill had mental illnesses, yet were able to achieve great things. 

When people liken mental illness to a highly negative state of being, it makes it more acceptable to totally discount a person’s value because of a mental illness, and it promotes the idea that outdated, politically incorrect definitions are valid. Just ask anyone with a child who has Down’s syndrome what it means to use the ‘r’ word, whether to describe a person or a situation.

A survey in the journal Schizophrenia Research found 71.4 percent of respondents thought schizophrenia was a stigmatizing name. One of the terms most preferred as an alternative was “altered perception syndrome.”  

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The concept of a new name for schizophrenia brings new hope. There is far too much stigma surrounding the word. Some believe it means you have a split personality (now known as dissociative identity disorder), others believe it means you are a psychopath. Because of misunderstandings about schizophrenia, I have missed out on many job opportunities, was told not to attend my high school reunion, and had close friends and romantic partners simply cut off all contact with me. The truth is, schizophrenia is a split from reality that can be well controlled with medications. 

Not that long ago, cancer was a word no one shared in polite company. As stigma lessened and people talked about it more, funds were raised, hospitals were built, and new treatments discovered. Lives were saved. When one considers that at least five to 13 percent of people with schizophrenia will die by suicide, I think they also deserve something better.

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Leif Gregersen is a writer in Edmonton.

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