October 18, 2017
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What It’s Really Like To Live With Schizophrenia

An intimate look at a loud, creative, and utterly ordinary existence

By Allie Burke


I AM ONE OF THE 51 MILLION PEOPLE WORLDWIDE LIVING WITH SCHIZOPHRENIA,diagnosed five years ago when I was 25 years old. Since then, I’ve been wrestling not only with the uncomfortable and often scary effects of the illness itself, but also with the often insensitive way people close to me—and in the culture at large—still view the illness. As of December, the Canadian Mental Health Association ranked schizophrenia as one of the “most stigmatized and misunderstood health issues.” It’s easy, though, to throw around words like “stigma” without appreciating what that means in daily life.

"Schizophrenia is loud. It is so, so loud."

So here’s what it’s like: That news report about a mass shooting and—wait for it—the reporter with no psychology background or experience claiming that the killer has schizophrenia. Your friends on Facebook, swearing that the shooter absolutely has to have schizophrenia, because anyone who willingly shoots up a school must have something seriously wrong with them. It is your family, pointing a finger at you for getting all TMI on the internet. (Don’t you know, it’s nobody’s business what’s wrong with you?)

Of course, schizophrenia can also be a 10-year-long steady job and awkward giggles from your colleagues: “You can’t be schizophrenic, you seem so normal!”

Honestly, I think part of the problem is that other mental health disorders have celebrity advocates. Pop culture can do wonders. Bipolar disorder can claim Carrie Fisher and Demi Lovato. Depression and obsessive-compulsive disorder have Kristen Bell and Maria Bamford. But schizophrenia must make do with A Beautiful Mind’s John Forbes Nash Jr. and—for those in the know—Elyn Saks, two figures who have become cartoonishly exaggerated in the culture’s perception of them.

Schizophrenia isn’t about what you think it is (for example, I haven’t scrawled a bunch of complex mathematical equations on a window lately). It’s loud. It is so, so loud—the voices in your head and the voices outside your head and the typing of keys and the vibrations of phones and the TV and the brewing of coffee and the footsteps behind you. Does he need to follow so closely? I’m sorry, what did you just say? I was too busy listening to the voice telling me I’m a loser.

And my loud world can only be quieted with meds that can take two months to end up in my medicine cabinet because securing an appointment with my psychiatrist is such an ordeal. And those meds often end up causing acne or depression or diarrhea, or leave me barely able to function—let alone work efficiently. (Sometimes I need to sleep 12 hours and take two daytime naps just to stay alive.)

Ever since my diagnosis, I’ve dedicated myself to advocacy on behalf of those with schizophrenia. Many who, because they aren’t writers like me, don’t have a way to voice their experience or are too afraid to use it because they have been stigmatized to the point of personal bullying and assault, as Miguel Angel González-Torres laid out in his 2016 paper “Stigma And Discrimination Towards People With Schizophrenia And Their Family Members.” Yet, despite how often I try to educate others about my illness, I face daily comments like, “You don’t look schizophrenic; you’re too well put together.” I’m sorry, what do schizophrenics look like?

I call myself schizophrenic. I don’t say that I’m a ‘person with schizophrenia.’ I want to directly own the disease that is part of me.

It’s hard to be hopeful in the face of this kind of cumulative misunderstanding. But over time, I have found a few amazing people—still fewer than five, though—writing and talking about their experience living with the illness. I always try to respond to messages from people with schizophrenia, thanking me for my contribution to these people, or from their mothers, asking for help as their sons rot in prison for having a brain disease.

So on their behalf, I want to tell you: Not all schizophrenics are violent people. A lot of us work full-time jobs at Fortune 500 companies or write novels for fun and go out for coffee just like everyone else. In fact, violence committed by schizophrenic people makes up less than 10 percent of violent crimes.Schizophrenia is people who look like you and work like you and buy gifts during the holidays like you and kiss their loved ones at night like you, just trying so hard to live a happy, functional life. A life where we might be remembered as that neighbor who always said good morning or that author that poured her life out on the page because she wanted to help people.

A schizophrenic life. I call myself schizophrenic, by the way. I don’t say that I’m a “person with schizophrenia.” I want to directly own the disease as something that is part of me and that will never go away. It is not a crutch. My schizophrenia helps me be creative and find passion in the small victories. It makes me who I am, which means that it’s something to be thankful for.

Illustration by Emily Lin


- Originally appeared at GOOD.is