What it’s Really Like Living 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. I was diagnosed five years ago, when I was 25. 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 our culture at large—still view the illness. The Canadian Mental Health Association has ranked schizophrenia as one of “the most stigmatized and misunderstood health issues.” It’s easy, though, to throw around words such as “stigma” without appreciating what they mean in daily life.
Here’s what it’s like
There’s a news report about a mass shooting and—wait for it—the reporter, who has no background or experience in psychology, claims that the “The killer has schizophrenia.” Your friends on Facebook swear that the shooter absolutely has to have schizophrenia. After all, anyone who shoots up a school must have something seriously wrong with them. And then, when you call them out, your family points a finger at you for getting all TMI (“too much information”) on the internet. “It’s nobody’s business what’s wrong with you!” they say. Of course, schizophrenia can also be a 10-year-long steady job mixed with awkward giggles and occasional well-meaning comments from 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 has to 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.
My loud world
My schizophrenia isn’t what you probably think it is. I haven’t scrawled a bunch of complex mathematical equations on a window lately. My schizophrenia is loud. It is so, so loud—both the voices inside my head and the voices outside my head. It’s the loud typing of keys, the vibrations of phones and the television. It’s the all-enveloping sound of coffee brewing and footsteps behind me. Does he really need to follow so closely? I’m sorry, what did you just say? You see, I was too busy listening to the voice inside my head telling me that I’m a loser. And you should know that, often, my loud world can only be quieted with meds, which can take up to two months to get into my medicine cabinet. Why? Because an appointment with my psychiatrist is such an ordeal. Of note, those meds I need 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 for 12 hours and take two daytime naps just to stay alive.)
A dedication to advocacy
Ever since my diagnosis, I have 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 or share their experiences—or who are too afraid to use their experiences because they have been stigmatized to the point of personal bullying and assault, as Miguel Angel González-Torres suggests 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 still face daily comments such as “You don’t look schizophrenic; you’re too well put together.” I’m sorry? What exactly do schizophrenics look like? 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 lived experiences. For my part, I always try to respond to messages from people with schizophrenia thanking me for my contribution, or from mothers asking for help as their sons rot in prison because they have a brain disease. So on all of their behalves, I want to make some things clear. Not all schizophrenics are violent people. A lot of us work full-time jobs at Fortune 500 companies, 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 per cent of violent crimes. “Schizophrenia” is people who look like you, work like you, buy gifts during the holidays like you and kiss their loved ones at night like you. And, just like you, they’re trying hard to live happy, functional lives where they’ll be remembered as that neighbour who always said good morning, or that author who poured her life story out on a page.
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 will never go away. It is not a crutch. My schizophrenia helps me to 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.
Allie Burke is the creator of the literary society and magazine Organic Coffee, Haphazardly. Her writings have been featured in Vice magazine, Refinery29, and in bestselling books sold nationwide. This article was originally published on GOOD Health (health.good.is).