Sharing Schizophrenia On YouTube : Shots - Health News Rachel Star Withers decided to let people know what was going on inside her head: the hallucinations, the voices. She says going public has helped her deal with schizophrenia and helps others, too.
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Would You Tell The World You Have Schizophrenia On YouTube?

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Would You Tell The World You Have Schizophrenia On YouTube?

Would You Tell The World You Have Schizophrenia On YouTube?

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RENEE MONTAGNE, HOST:

Today in Your Health, we are going to hear what it's like to have schizophrenia. Often, people with this illness end up isolated and rejected from society. NPR's Angus Chen tells the story of one woman who broke through that isolation and discovered an unusual way to help herself and others cope with this mental disorder.

ANGUS CHEN, BYLINE: Rachel Star Withers keeps a mannequin in the corner of her bedroom.

RACHEL WITHERS: I got my little mannequin man there with all my hilarious little participant medals.

CHEN: She likes to hang clothes on him, too. But he's not just a glorified clothing rack. The mannequin reminds her of a college classroom that she used to hate.

MONTAGNE: They would have these mannequins in the back of the room. And I would hallucinate so bad that these stupid mannequins were, like, coming close to me. And I could see them moving. And it was just, like, a horrible class to be in. The class itself was easy. But those damn mannequins in the back of the room really freaked me out. And so I decided to keep this guy just because it's kind of like a little gotten over my fear kind of thing.

CHEN: Rachel Withers has schizophrenia. She hears ticking in rooms with no clocks and her name called out when there are no people around. When she walks down the street, things can come to life that shouldn't. A store mannequin will take off its hat and approach her. She's had the hallucinations since she was a kid.

R. WITHERS: Things in my closet - I had seen my closet door opening and closing. Outside my window, I saw faces in trees all the time. In anything - I could look at, like, the wall and suddenly it would become, like, a - you know, like, there'd be a face there making, you know, expressions at me.

CHEN: You never told anybody about this?

R. WITHERS: So there was a few issues - one, I grew up in the church. So you hear a lot about, like, angels and demons and Satan and all that. And honestly, I just kind of thought that's what I was seeing.

CHEN: Once Rachel tried to tell her classmates about a hallucination. But when none of her friends knew what she was talking about, she shut up fast.

R. WITHERS: It was so hard to even, like, make friends when I was, like - just before I really learned a lot of my coping mechanisms and stuff. Like, back then, it was just so hard. So any time, like, I got a friend - yeah, and then freaked them out - that was bad (laughter).

CHEN: And as she got older, the disease progressed rapidly. By the time she was in high school, she was getting sudden urges to badly hurt herself.

R. WITHERS: It was just - like, it's this thing that's always there. And if I dwell on it too much, I'll want to hurt myself and, yeah, kill myself.

CHEN: For the most part, she was keeping all of it to herself. When she cut herself, she hid the wound under her shirt or pants. But there was one thing that stood out to Rachel's mom. She says Rachel was having extreme fits of rage.

JANEL WITHERS: You might be trying to give advice like - Rachel, why don't you do this? But, no, I want to do that. And then...

DEAN WITHERS: And that's where she would explode.

CHEN: That's Dean and Janel Withers, Rachel's parents. They just couldn't figure out what was going on.

D. WITHERS: She would just explode, you know, and just start kicking something or ripping off something, you know, and jump in the car and run off, you know. And I'm just left there thinking - that wasn't worth fighting over. I didn't mean for it to go that far, you know.

J. WITHERS: She was getting upset almost every day. I mean, it was - I was getting so I'd sneak through the house, you know, which is not a good way to live.

CHEN: It wasn't just the people around her that didn't understand it. Rachel had no idea either. She tried to find help through the church and youth Christian groups that she joined. But things only got worse.

R. WITHERS: I remember I smashed my head so hard into the wall that, like, it went white. And I think it was just - I think just the social interaction was too much for me. And yeah, I had this, you know, desire to just - and it was like - it was almost like something telling you, smash your head into the wall. And when I did, like, it just - bam - I hit the stairs. I remember laying there on the stairs for a while, until I could finally get up. And - and it was just - it escalated. It got more and more like that. And I knew I was in trouble. Yeah.

And I had tried to tell - I had a friend I tried to tell. And, you know, her response at that time was - well, God doesn't want you. And so I was like, OK, well, that friendship ended.

CHEN: So Rachel withdrew even more. But being by herself was almost worse. The depression and the hallucinations were getting harder and harder to deal with. If she was alone too long, she said she would have really harmed herself. And she would have done it in a way that would echo a hallucination she'd see when she looked at her reflection.

R. WITHERS: The eyes were still there. But all the skin was, I guess, peeled off, more like - yeah. I'd scared to look into the mirror that I'd see her - that any reflective type thing I'd just stay away from.

CHEN: Was that terrifying? I mean, it sounds...

R. WITHERS: Oh, yeah. It was horrible. I was - yeah, I mean, it messed me up. I was - yeah - very suicidal and couldn't - I mean, there was no escaping something that's in your brain. Like, there is no escaping it.

CHEN: Do you think you would have done that to yourself eventually?

R. WITHERS: Yeah, yeah - probably committed suicide somehow and that'd had been involved.

CHEN: She promised herself that if she made it through the end of the year and into college, she'd get help. And she did. As soon as she enrolled, she found a psychiatrist who diagnosed her with schizophrenia.

R. WITHERS: It was scary when I first got told I was a schizo. And I was looking up stuff. The only things you could find were serial killers - just all this, like, horrible stuff about schizophrenics.

CHEN: So she decided to confront that fear, not just for herself, but for everyone who was going through the same thing.

R. WITHERS: I don't want, if someone else gets this diagnosed tomorrow, for that to be the only thing they see pop up if they Google it. It's just scary stuff. I hope that, yeah, a real person pops up and knows that, hey, this isn't the end of the world.

CHEN: So Rachel took a video camera. She turned it on herself and opened up to the world on YouTube.

(SOUNDBITE OF YOUTUBE VIDEO, "NORMAL: LIVING WITH SCHIZOPHRENIA")

R. WITHERS: Hey, I'm Rachel Star. I'm a 22-year-old female schizophrenic.

CHEN: This is Rachel's first video about mental illness.

(SOUNDBITE OF YOUTUBE VIDEO, "NORMAL: LIVING WITH SCHIZOPHRENIA")

R. WITHERS: Schizophrenia is a very lonely disease because you're trapped in your own head. And it's hard to explain to other people. I'm making this because I don't want you to feel alone.

CHEN: In 2008, when you were, like, afraid for people to know about your diagnosis, it must have been so hard to make that video and hit that upload button.

R. WITHERS: Yes, yes. That first one - I was terrified. Now, I remember telling my counselor. And he was like - are you sure you want to do this? And I was like - yeah, yeah. You know, I make other videos - why not? - but really being, like, terrified. And I think he was worried, you know, the response, too. And my parents, too, really didn't want me putting stuff out there. My mom used to worry all the time. You know, Rachel, we don't want people - you know, if you put this on the internet, you know, what's going to happen when people Google you? What are people going to say? How are people going to react?

CHEN: For all she knew, Rachel was about to receive an onslaught of cruel remarks. But that isn't what happened. Next week in Your Health, we'll hear how Rachel's about to step into something she never really had - a community that understood her. Angus Chen, NPR News.

MONTAGNE: And that story is part of a collaboration with member station WNYC's podcast, "Only Human."

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