What It's Like to Have Schizophrenia
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What It's Like to Have Schizophrenia

It's not pretty, that's for sure. For years I hid my terrifying symptoms from everyone until I nearly lost my mind -- and my life.

Here are four things you've probably heard about people who have schizophrenia. Since I've struggled with the disease for almost my entire life, I'm more than qualified to tell you if they're true or false.

  1. They hear voices. Yep, I hear them. Those are real, at least to me.
  2. They're paranoid. True. For years I was pretty sure people were out to get me.
  3. They commit violent crimes. No, that's not a symptom. Those of us with schizophrenia tend to be secretive and avoid human contact. We're more likely to hurt ourselves. Which brings me to:
  4. They commit suicide. Unfortunately, true. About 40 percent of us try it, and 10 to 13 percent succeed. The voices I heard told me to kill myself, and I came pretty close to doing it -- until I finally got help.

People are talking about mental-health issues these days, and that's a good thing. But it's so important to separate the myths from the realities. That's why I want to tell my story.

Looking back, I think I had symptoms of schizophrenia as early as kindergarten. Remember those "stranger danger" films when you were little, where a man gets out of his car, offers you candy, and then kidnaps you? Well, I became terrified of those men and started having nightmares about them trying to capture me. When I'd get off the bus after school, I'd run home as fast as I could. If I saw a car coming, I'd hide in the bushes so the men couldn't get me. And I figured out right away that I should keep this a secret and not tell my parents or friends. These were early versions of the delusions, paranoia, and extreme secrecy that became part of my pattern for years.

I grew up in Seattle and had a relatively happy childhood, but in junior high we moved to California. I had a harder time making new friends there. I looked like I belonged. I played soccer and was on the track team. I was thin and fit and wore the coolest jeans. But I became convinced that other kids were watching me and talking about me behind my back. I was sure they hated me, and I was scared of them. I hid it well, though: My parents just thought I was a little insecure.

I was in high school when I started hearing the voices. I was picked to give a graduation speech, but I thought I heard people talking about how they didn't want me to give the speech. They weren't, of course, but here's the thing: It wasn't like a figment of my imagination. Those voices seemed absolutely real to me -- like having hallucinations that you hear.

I was a high achiever, both as an athlete and academically. Yet I was convinced I was a total failure. I worked harder because of it, but I just became more and more miserable. I was so good at covering up what was going on inside my head that I was even voted "most likely to succeed." To make things worse, I developed anorexia because a voice kept telling me that I was fat and ugly. My mom became concerned about my health. But most of the time my parents and teachers had no idea that anything was wrong.

I got accepted to Duke University, where I majored in economics and public policy. At first I made friends, joined a sorority, participated in the triathlon club, and even had a boyfriend for a couple of months. But by my sophomore year I thought that people were talking about me and laughing at me all the time. I was so afraid of everyone that I quit the clubs and started isolating myself more and more. I'd hide in my single dorm room (let's just say I wasn't an ideal roommate), with black paper over the peephole in my door. If someone knocked, I'd be so terrified that I wouldn't open the door. On weekends I'd pack up a bag of food and hide in an empty classroom. I'd do almost anything to avoid people. Still, I continued to keep up appearances. I participated in class discussions, got good grades, dressed well, did my hair. To others I looked pretty normal, but that's not how I felt.

Lost in My Own Reality

Around this time I saw a doctor who diagnosed me with depression. My parents were worried; they could tell I didn't have any friends. Of course they had no idea that when even the slightest thing went wrong, like if I got a bad grade on a test or my car had a flat tire, I thought about killing myself. I was an expert at hiding my feelings.

I was so secretive that I told my brother, with whom I'm close, that he couldn't come visit me. He thought I was just being difficult and we stopped talking to each other for about a year. It was a painful time for my whole family. I distanced myself from them because I was scared and paranoid, but they thought I just didn't want to see them.

My life really fell apart when I started graduate school at Harvard for a master's degree in public policy. I was hearing voices all the time. They were feeding on my vulnerabilities, telling me "You're fat, you're ugly, you're worthless, you deserve to die..." usually in this particular male, robotic-sounding monotone.

My mental abilities were slipping, too. Experts don't really understand why it happens, but cognitive decline is a part of this disease. When I got to the Harvard campus in the fall of 1998, I was completely disoriented. I'd get lost trying to find a classroom. I couldn't listen and take notes anymore. One day at the laundromat I looked at the coins in my hand and they all looked the same; I couldn't count them. I had intense hallucinations, too. For example, my mom's parents were Holocaust survivors. One day at a subway station near the campus I thought the trains were going to concentration camps. I was utterly convinced that if I got on a train I would die. So I stopped taking public transportation.

Soon I could no longer do the most basic things, like read and write, wash dishes, or take a shower. When I did go out, I wore a scarf around my mouth to keep random words from escaping. Some days all I could do was watch reruns of Laverne & Shirley. And I thought my landlord was trying to kill me. I felt like I was losing my mind, and I finally had to quit school. I still didn't know what was wrong with me, though. I thought maybe I had a brain tumor. I saw a neurologist, but the MRI showed nothing. And of course I didn't tell him about the voices or hallucinations.

Despite my secrecy, my parents were deeply worried. One day when I was talking to my mother on the phone, I told her I couldn't understand a word she was saying and I broke down crying. She panicked at first, but then she went online and got me an appointment with a psychiatrist. He thought I had borderline personality disorder (because he specialized in borderline personality disorder). Then I went to a specialist in bipolar disorder, and guess what? He thought I had bipolar disorder. But two months later, I finally found a doctor at McLean Hospital, affiliated with Harvard Medical School, who really helped me.

I'd only been seeing him for a couple of weeks when I hit rock bottom: My voices told me to kill myself. "Seattle is where you were born and where you were meant to die," they said. I decided to do it. Despite my cognitive decline, I was able to plan my trip using the same determination that helped me fool everyone all those years. I unplugged my phone and fax machine in Cambridge and paid cash for my airline ticket so no one could track me. I didn't tell anyone. When I arrived in Seattle I checked into a hotel, where the voices seemed to emanate from the walls of my room. They told me to jump out the window. I tried to gather my courage to do it, with the voices egging me on. But then I thought about the physical pain of jumping, how much it would hurt, and something deep inside me, some long-buried sense of self-preservation, made me call my doctor at McLean. Luckily someone paged him and he called me right back. I told him where I was and that I just needed to talk. I didn't tell him I was planning to kill myself, though. (He told me later that if he'd known he would have sent the Seattle police to my hotel.) His calm, reassuring voice was so different from the voices in my head and somehow, despite my foggy brain, it gave me the perspective I needed to postpone my suicide. I flew home the next day, and that was my turning point.

Dealing with the Diagnosis

Getting a diagnosis of schizophrenia is very complicated. You have to have symptoms for at least six months. And, of course, you have to actually share what your symptoms are. After the Seattle incident, I was given a bunch of tests over several days. It was exhausting because I was convinced that the people doing the tests were out to get me. I thought everything had hidden meanings and I was terrified. My doctor gave me an IQ test, too, and my once very high number had now dropped to 70, a level nearly low enough to classify me as mentally retarded. I was in such bad shape I had to be hospitalized twice. All this told the doctor what he needed to know. I felt both devastated and hopeful to finally have a diagnosis. Schizophrenia.

I needed lots of cognitive behavioral therapy to sort out my distorted thoughts. And we had to rebuild my brain from the bottom up, just like a broken body after a car accident. It was a relief when I finally told my parents. They flew across the country and were there for me every step of the way. My mom started by reading children's books to me -- old favorites like Babar, Curious George, and Make Way for Ducklings, to trigger my memory. We did word searches and played simple card games to stimulate my mathematical aptitude. For creativity, we played with Play-Doh and colored in coloring books. Little by little my brain got stronger. When I could read again, I started with juvenile books like Deenie by Judy Blume, which I had read as a tween. I practiced memorizing by starting with college basketball rankings and eventually worked my way up to Shakespeare. We slowly nursed my brain back to health.

Yes, I needed medications, too. I took antidepressants and I tried many antipsychotic drugs -- Haldol, Seroquel, Clozaril, Zyprexa (the one I'm on now). My doctor always believed, even when I couldn't read or write, that I would go back to Harvard. His faith in my future made all the difference. When I finally did go back, it was definitely difficult, but I got my master's degree.

I still hear the voices at times: "You're going to fail, you're going to get fired." "You're fat, you're ugly, you deserve to die." It happens when I'm stressed out and tired. My doctor gave me techniques to help me cope. One I call "the hand." I count on each finger the people who agree with what the voices say, and there's only one: the voice itself. Then on the other hand I count the people who disagree with what the voices say: my doctor, my family, my friends, my coworkers -- and then that hand covers the other and overwhelms it.

I learned so much, I decided I wanted to help others who'd been through a similar nightmare. Now I have a full-time job working with people who have mental-health issues. I teach, arrange events, speak to groups, and mentor patients. I want them to know that recovery is possible.

My life is so different now, and I'm sad I missed out on all kinds of normal relationships for so long. Sure, dating is difficult. Seriously, when do you tell a potential partner that you have schizophrenia? It's not something you want to say on a first date. Seeing my brother's loving family makes me think of how much I want kids. I recently turned 39, and I know that my medications can cause problems with pregnancy, so I doubt I can have a baby. Sometimes I mourn the fact that I'm not married and don't have children.

Schizophrenia is relentless, that's for sure. There's no cure, and you have to fight it every day. But I'm doing the best I've ever done. I have tremendous support from my family, my friends, and my doctors. It's really challenging. And it takes guts to tell this story. But it's about the fight -- a fight I'm winning.

shim