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What It's Like to Be a High-Functioning Schizophrenic

Even on medication, I experience auditory hallucinations all the time.

by Syrena Clark
Apr 28 2016, 7:15pm

Photo via Flickr page Health Blog

Here are some things you need to know about schizophrenia: If you have it, you're forced to question everything, whether it's real or invented by your own mind. You can't overcome it with willpower alone, like Russell Crowe in A Beautiful Mind. One in every 100 people will develop it, often in their early 20s, meaning there's a chance you know someone who has it, even if he or she doesn't seem schizophrenic at all.

I was diagnosed with schizophrenia nine months ago, after a slew of other diagnoses—depression, generalized anxiety, anorexia, borderline personality disorder, post-traumatic stress disorder, psychotic disorder, body dysmorphic disorder, conversion disorder, obsessive-compulsive disorder, and bipolar disorder—failed to explain the complexity of my symptoms. (Some of those diagnoses still stand, but others have been replaced by the newer schizophrenia diagnosis.) My doctors seem to think I'm doing well—or, as they put it, I am "high functioning."

It started three years ago, when I woke up to a small rushing inside of my head—like when you hold a shell to your ear and can hear the faint crash of waves. I went into work later that evening, and everything seemed normal. I ran the register, I stocked shelves, I cleaned the bathroom and swept the floor. Then I started to notice that the voices of the customers sounded strange, as if a second voice in the background was trying to catch up. That evening, I had my first auditory hallucination, something that happens to 75 percent of people with schizophrenia.

Later, I had my first visual hallucination—a man who grabbed onto me and whispered sentences that hardly made sense. He followed me home. I found myself convinced that he was there to kill me and could read my mind. More than that, I was entirely convinced this man was real.

On Motherboard: What Schizophrenia Isn't

After that, my mind was never quiet again. I stopped sleeping regularly, and when I did sleep, I had terrifying nightmares about alien abduction. I grew paranoid about the people around me and started to disassociate. Gradually, I began to feel more and more like a balloon attached to a distant body. Over the next two years, I attempted suicide twice and was hospitalized six times, where nurses would give me gowns with no strings. At the time, doctors didn't suspect schizophrenia, which affects about 1 percent of the population.

I later learned that that 1 percent translates to about 2.4 million Americans—and that I was one of them.

Returning to high school after my hospitalizations, I made up stories to answer the inevitable barrage of questions. I lied to everyone, save a few teachers, and tried to pretend everything was fine. As I graduated with honors and a sizable college scholarship, I tried to push past my mental health concerns—but they were unavoidable.

After high school, I was living off of a checklist that I hung on my wall:

1. Wake up
2. Self-care (shower, brush teeth, etc.)
3. Eat
4. Dress
5. Take meds
6. Go to class
7. Eat
8. Take meds again
9. Coping skills (breathing exercises, etc.)
10. Take meds again

Most days, I couldn't manage to get through the list. I went off of the antidepressant I had been prescribed, and I turned to drugs to self-medicate. I was barely functional—I stopped brushing my hair and teeth, stopped washing my clothes. By the end of my freshman year of college, I had met every single mobile crisis worker in the area, and the emergency room staff knew me by name.

Then, last August, at the age of 21, I was finally referred for a new psychological evaluation. It was a four-hour test. When the results came back two weeks later, my caseworker pulled the envelope out. "Your evaluation came back. You've been diagnosed with schizophrenia."

I took the envelope in my hand and pressed it to my lap. "OK."

"Well, aren't you going to read it?"

"No," I said, "I don't think so." The results gave a name to something I'd already lived through.

To be a high-functioning schizophrenic is to barely function at all.

Following my diagnosis, I started taking antipsychotic medication. My first large dose left me with an intense but intangible feeling of fatigue. My brain became dense, like spongy bread that had failed to rise, and there was no amount of coffee that could make me feel awake. Soon, I gained 20 pounds—a common side effect of antipsychotic medications—and could no longer fit into my old clothes.

Related: Treating the Elusive, Disabling "Flatness" of Schizophrenia

I take medication three times a day; at night, I need a concoction of melatonin, Benadryl, and Vistaril to fall asleep. Though my medication has saved my life, it will also probably end it. Antipsychotics significantly increase the risk of developing breast cancer and diabetes. Just being diagnosed schizophrenic takes 20 years off my life expectancy, and the suicide rate for schizophrenics is eight times higher than it is for the general population. Every few months, there's a story in the news about a person with schizophrenia being killed by police.

Even on medication, I experience auditory hallucinations all the time. Sometimes it's background chatter; other times it's white noise. Sometimes I can understand the voices, and sometimes I can't. Often I find myself terrified that the radio can hear my thoughts. I have to pause and breathe my way through every thought, every action, separating hallucination from experience. It's never quiet.

This, the doctors tell me, is what a "high-functioning schizophrenic" looks like. I can attend university, as long as I keep my course load to three classes at a time. I can't work, because it's still hard for me to control my symptoms, but I don't need to live in a clinical setting or a group home. I'm succeeding, they tell me, because my life has regained some normalcy. But to be a high-functioning schizophrenic is to barely function at all.

From the outside looking in, I guess I seem fine. People seem surprised when they find out. "Wow," they say, "I've known you for years, and I never would've thought that you..."

"I'm schizophrenic," I say. "You can say it."

When people do talk to me about my condition, they want to know what the voices sound like. They want to know I have more than one personality, or if each personality has a different hair color. (No, that's not what schizophrenia is like.) They want to know if I've seen A Beautiful Mind.

Schizophrenia is a lifelong, disabling condition, but there are no relays for this disease. There are no walks to end schizophrenia, no T-shirts that say, "I love someone with schizophrenia." People look at me with fear, not empathy, when I tell them about my diagnosis. And although I have scars—emotional and physical ones—from this disorder, I do my best to hide them. After all, the doctors say I'm functioning just fine.

If you are concerned about your mental health or that of someone you know, visit the Mental Health America website.