What It’s Really Like to Live with Schizophrenia
“I’m hallucinating to some degree 90 percent of the time.” (Photo by Nathan Caskey)
Rachel Star Withers, 30, was diagnosed with schizophrenia in her early twenties. She moves through the world in the company of hallucinations no one else can see or hear. Here, she explains how schizophrenia has affected her life and why she won’t let it stop her from living it to the fullest.
The Hallucinations Started Early
As a kid, I thought everyone saw the same monsters under the bed that I did. It wasn’t until I was around 16 and mentioned them to some friends that I realized I was alone on this. When I was around 18, in addition to the hallucinations, I became depressed and suicidal. I went to a doctor who told me I was depressed but didn’t mention schizophrenia, probably because I hadn’t explained the full extent of my symptoms; I was scared I would be sent away if I did. It wasn’t until I was around 22 that a different doctor told me I had pretty advanced paranoid schizophrenia.
Now, I’m hallucinating to some degree 90 percent of the time. I have both audio and visual hallucinations. There are often figures moving around the edge of my vision or standing in the corner of the room. I hear a lot of ticking, or sometimes it sounds like a radio is playing in a different room. Then I walk in there, and nothing’s on. When I drive, sometimes a song I like will come on with new lyrics. I’ll be like, “I’ve never heard this edit!” Then later I look it up and realize that edit doesn’t exist, and the lyrics were in my head. I’m pretty used to it all by now.
RELATED: What You Need to Know About Suicide and Depression
I took a class in college that had design mannequins in the back of the room. I would see the mannequins moving, and it would freak the crap out of me. Then I’d look weird during class because I couldn’t stop staring at them. Schizophrenia is like your mind is playing. You have no control over it, but you get to observe some of the weird stuff it can do.
My hallucinations, especially the ones where I’d see things like my face bleeding or my brain rotting, excerbated the suicidal thoughts I used to have when I was younger, and they made me want to kill myself. They weren’t ever telling me to kill myself, but I would look in the mirror, and my reflection would be very distorted and ugly or covered in blood.
At the time, I thought I needed to kill myself so it would stop. That’s another common hallucination I have: Parts of my body are rotting or falling off. Sometimes, I wake up and feel like I’ve lost an arm or hand. I can try to touch them, but I’m in a delusional state so I’m not logical. Other times, it feels like my arm is a snake and I can’t control my movements. When you’re in that state, there is no common sense. I recorded a video about my scariest hallucinations that I posted on my YouTube channel:
The Voices I Hear
A lot of people ask if my hallucinations tell me to hurt others, and the answer is no. Once, I was on a work trip and had to stay in a hotel room with this guy. Right before we went to bed, he was like, “Have you ever killed anybody?” I was like, “What?! No!” He said he was just wondering and had to ask before he went to sleep. Another time, I was watching an ex-boyfriend’s niece, and she asked the same question.
When it comes to TV and movies, it’s like people in Hollywood are thinking, “How do we make this person crazy? Oh, let’s give them schizophrenia! That’s a scary word!” That’s part of why I was scared to tell people I was hearing voices. People assume if you’re hearing voices, they’re automatically telling you to kill someone. It’s as though a schizophrenic is a serial killer waiting to snap, but I just hear things like people calling my name.
RELATED: Demi Lovato Speaks Up About Living with Bipolar Disorder
(Photo by Image 1st)
Treating My Schizophrenia
I’ve been through tons of medications. There was a period of about seven years when I had shelves full of antipsychotics and antidepressants. My doctors eventually took me off all antipsychotics because they weren’t doing much. The meds I was taking were often sedatives, so I still had hallucinations, but I was sleepy and not able to act on them. I gained 80 pounds over the course of three years. Now I’ve lost most of it, but those medications don’t play around. I’m currently just on antidepressants to keep my mood level.
When I was 24 and a senior in college, I decided to get electroshock therapy. I was terrified of the idea of it but wanted to try anything that I thought might help. It actually gave me brain damage, and I had to relearn how to read. Still, it worked wonders for me in terms of finally knocking out that depression, so I’m glad I got it. It didn’t change my hallucinations, though.
How Schizophrenia Has Affected My Career
My little brother and I were always obsessed with Wild Boyz on MTV. It was this group of guys who traveled around the world and did a crazy nature show. My idea was to do the Internet version. I started filming, some TV shows picked it up, and I got a video agent. Since then, I’ve worked on different shows, both behind and in front of the cameras. That’s been my freelance side gig for about eight years, and then I also do a bunch of part-time jobs. I can’t work full-time; although I’ve been offered full-time jobs, I get really edgy if I have to sit at a desk for 40 hours a week.
RELATED: The Disease That Impacts Nearly 1 in 4 Women
Right now, I have two part-time jobs: one teaching modeling and acting and the other doing Web videos for a gym. I obviously don’t walk into an interview and say, “Hey, by the way, guess what?! I have schizophrenia.“
Once I get the job, I’ll usually sit down with HR or my boss to explain. I have to be open about it because sometimes when I get delusional, my words slur, and I get confused. My coworkers at one crappy job always joked about how I seemed drugged, and I don’t want that reputation. I don’t walk around telling everyone, but sometimes word gets out. I’ve heard about people joking behind my back that I’m crazy or weird, but I don’t think they would ever say that to my face. And the truth is, I’m confident—so I try not to let it bother me too much.
(Photo courtesy of Rachel Star Withers)
Schizophrenia and My Relationships
My diagnosis has affected my love life quite a bit. Right now, I’m single, and it’s hard to figure out when to tell new people. I obviously don’t want to keep it quiet and then spring it on someone down the line. It’s also not a first-date topic. I usually don’t mention it until around the fifth date. By that time, I’ve already pointed out my website or we might have become Facebook friends. I’m open about my schizophrenia in both places.
A lot of people have reacted negatively because they haven’t been around someone with a mental disorder. They think I’ll be drooling and rocking myself in a corner or attacking everyone in the restaurant with a knife. Or they make jokes, like, “Crazy ex-girlfriend material right here!” That hurts. That’s one reason I’m so open about it on Facebook and my website because I can’t deal with that.
I was even in a relationship where someone cheated on me and said I was just hallucinating. I don’t hallucinate text messages on your phone any more than I hallucinate purple elephants. That’s not how it works.
The Bottom Line
There are a lot of misconceptions about schizophrenia, but it’s really not that scary if you think of it as your brain playing. It can be weird at first, but it’s also really neat when you realize your brain can make up these images as if they’re real. If you worry you have it or have been diagnosed, know it’s not a bad thing. You’re just different, and you have to learn how to manage that and accept it for what it is. The world wasn’t made for people with mental disorders, but that doesn’t mean you can’t be in it and have a kickass life.
RELATED: Do You Have an Anxiety Disorder—Or Are You Just a Worrywart?
—
Rachel Star Withers is a freelance content producer for TV shows specializing in stunt work. That’s the fancy way of saying she films herself doing crazy insane stunts for TV. She has appeared on American Ninja Warrior, America’s Got Talent, MTV’s Ridiculousness, and other shows. She also documents her life managing her paranoid schizophrenia and depression. Rachel loves to stay active doing mixed martial arts, trail running, and traveling the world when she can. You can follow her on Twitter, and if you think you might have schizophrenia or have been diagnosed, feel free to e-mail her at Rachel@RachelStarLive.com.
More from Women’s Health:
I Predicted My Own Near-Death Experience
What It’s Like to Live Without Your Sense of Smell
A Woman Had EIGHT of These Mini-Monsters Lodged in Her Brain
