Stop Stigmatizing Schizophrenia

Get real, change language, and change attitudes

Smart people get it so wrong… again

On an early political show this morning, the host exclaimed that the conflicted response to a Covid-19 issue was, “schizophrenic.” You can’t go a day of media exposure without hearing it.

I am a clinical psychologist who thought she was “hot stuff,” early in her Hi Marcareer. But then I had several hospitalizations for debilitating depressions. People with schizophrenia were no longer my “subjects.” They were my room-mates. I learned more than I ever did from a book or lecture. I often remembered Emily Dickinson’s line, “it hurts to live,” as I got to know my compatriots on the psychiatric units. I often look back at my clinical training and reflect on my prestigious “residencies,” vs. my residencies in hospital rooms on locked wards. As a psychologist and a sufferer of mental illness, I wince every time people show such a total lack of curiosity about the words, or their investment in getting it right.

Flying by the seat of my pants

Early in my training, I literally drew the short straw for doing a lunch meeting with schizophrenic patients. I had only had about 10 minutes of training in general, and had no idea what to do with my new group.

The first lunch was a nightmare. People got up in the middle of the group and slowly circled the couch (A medicine side effect). One person actively hallucinated a paranoid — laced delusion which must have felt horrible (but to me was “inappropriate”). One guy was asleep, and a woman was close to sexually assaulting her neighbor.

I still cringe at the memory of what I asked a guy who was obviously, quietly, actively engaged in an animated conversation with an invisible someone, “Joe?” I asked. “Are you having your own thoughts?” Several people laughed and imitated me. My father-in-law always suggested I get my real estate license to have “something to fall back on.” For the first time in my life, it didn’t seem like a bad idea.

A very depressed young man next to me, leaned over and said, “You hate it already, don’t you?”

I had no idea what to say, so I told the truth, “I don’t know what I’m doing.”

“I can see through you,” he said. “Do what you think. Just help us.”

So I interrupted the action and asked the group, “How can I help?”

They tripped over each other answering my question.

Answer the phone.

One woman had the largest following. “The phone,” she said. I still didn’t know what she meant and then I was barraged with a list of phone problems: getting and keeping phone numbers, dialing correctly, blocking out competing thoughts, being prepared for the first sentence when someone answers the call, saying the right thing, introducing yourself, writing things down on paper. I was overwhelmed. I thought I was supposed to help them with their feelings, not this stuff.

I went next door, took two phones out of their sockets and returned to my group. They were so impressed with my behavior you would have thought I had stormed the Bastilles. For the rest of the time, we had wild practices. For the next week and the next. I didn’t know what I was doing wrong or what I was doing right, but I started looking forward to lunch.

Feeling real

Months later, at the end of the group, they were asked to give feedback on me as a leader. They were noticeably quiet.

“Nothing?” I asked.

“We’re mad because you’re going away.”

“Yeah,” piped up a usually quiet woman. “You were real, and you made us real.”

The majority agreed. You made us real. It has been a mandate in my work ever since, and an expectation of my own treatment as a patient.

What is it like?

Schizophrenia is one of the cruelest, most heartbreaking illnesses in medicine. Yes, it is a disorder of thought. But not about having some trouble making up one’s mind. That’s ridiculous. I refuse to call people, “schizophrenics,” just as I would not call them “cancers.” The more appropriate designation is that a person has schizophrenia, like other serious illnesses. But I most prefer the designation of one who suffers from schizophrenia. Because that’s what it is. It’s suffering.

People with schizophrenia are often at the bottom of the food chain of those of us with different forms of mental illness. Even among professionals who have to face the intractability of the illness, they aren’t the most popular patients to treat. And let’s face it, it’s exponentially worse out there in the general population, where their behavior is amusing to some, or scary. They are a source of disdain, because of dress and demeanor, and they are even default “terrorists” when we can’t explain mass shooting casualties. “Mental health issues” is another one of those dog whistles, that extends beyond schizophrenia, to conjure up the general distrust that plagues people with mental illness.

So much suffering

The illness rips a huge hole through the way its victims perceive reality — with hallucinations and delusions cursing them with interferences in the many ways we interpret information. It distorts feelings, emotional connections, and ruins the capacity to feel pleasure. It is next to impossible to set goals and follow them consistently. And, suffering from schizophrenia puts a person at risk for early death, co-occurring medical conditions and suicide.

Because its onset is from the later teens to early thirties, it teases people to know the comfort of feeling relatively unburdened by symptoms early on, but then be stalked by compromises that accompany them through late childhood, and march through a sufferer’s life, with the hope of management, but no cure.

Schizophrenia is a tremendously disabling illness which creates a 24/7 burden on the sufferer, as well as his family and caregivers.

If I was ever asked of all the illnesses that would be hardest for me to bear, it would be schizophrenia.

We get sloppy when we talk about mental illness

Words hurt. A person refers to himself or others as “schizophrenic,” just because he holds opposing ideas within himself that make him uncomfortable. Rather than use one of the many words available to describe such a state (ambivalent, mixed, conflicted), he just gets lazy and falls into familiar habits. There’s a world of difference between suffering from the horrible illness of schizophrenia and having a bunch of “mixed feelings.

Wrong headed ideas about schizophrenia are articulated by people whom I usually consider very bright, with an excellent command of the language, and a selective sensitivity in the potential hurtfulness of words. This is one of the last frontiers of correctness. Being “schitzo” or “schizophrenic” are tossed about in the entertainment media with abandon. In entertainment, in the popular culture, regular people are called schizophrenic because they have mixed, or diametrically opposed feelings within themselves. “I feel really schizophrenic about that.” Or, “Her policies on the school board are schizophrenic.” It is enormously trivializing. It is like saying that someone with lung cancer just has a cold.

Get real

Those dreaded lunches ended up teaching me so much. And I wish more people could benefit from them.They followed me throughout my training and practice. They informed my ideas about mental illness. And then, they revisited me when my identity as a patient changed me. I understood what they meant about real.

Real is human. Real is being a person first, and a patient second. Real is suffering because of the illness, not yourself. Real is respected.

Unreal is how people describe you and your illness. Unreal continues the stigma. Unreal feeds the pain. Unreal diminishes the humanity and horror of the illness by trivializing it, and throwing around labels that aren’t at all appropriate.

Watch your language. Have your mixed feelings. Have your diametrically opposed opinions. Have your sense of the inexplicability of issues and your confusion how they can co-exist. But stop calling them “schizophrenic.” Your comments just reinforce the distance and misunderstanding of the real thing. Take a few minutes and educate yourself about schizophrenia.

And get real.

Written by

Martha Manning, Ph.D is a writer and clinical psychologist, whose memoir, Undercurrents deals with her severe depression. Like heavy stuff with lots of humor.

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