Rachel Star Withers Helps People Understand Schizophrenia : Shots - Health News People with schizophrenia say it helps them cope when they see others talking about the experience online. Their friends and family members say it gives them insight into that hidden world.
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How YouTube Videos Help People Cope With Mental Illness

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How YouTube Videos Help People Cope With Mental Illness

How YouTube Videos Help People Cope With Mental Illness

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DAVID GREENE, HOST:

And I'm David Greene in Orlando. And we are in this city because we are covering the aftermath of the deadliest mass shooting in U.S. history. Forty-nine people were killed, shot down by a lone gunman in a crowded gay nightclub in the early hours of Sunday morning here in Orlando. And we'll continue updating you on this story throughout the day.

STEVE INSKEEP, HOST:

We're also tracking this story. It's our regular Monday Your Health segment, and we're going to catch up with Rachel Star Withers. Last week, we heard about her posting on her first YouTube video on schizophrenia.

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

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

INSKEEP: After revealing her diagnosis, she worried about attracting cruel remarks. But as NPR's Angus Chen reports, she found something she never had before - a community that understood her.

ANGUS CHEN, BYLINE: Things could have gone very badly for Rachel after she put out that first video. Her mom lays it out like this.

JANEL WITHERS: You know, why put it out there for the world to come back at you, or to start treating you differently, or jobs? Because nowadays they search the internet before they hire people. You know, they look you up. And they see this, and they'll be like - well, I don't know. You know, a schizophrenic, I don't know, she may go nuts here.

CHEN: There were a few nasty comments on the video. Rachel said she was somewhat prepared for that and was able to ignore them. But she wasn't expecting most of the emails she received. They were from people who were thanking her. They said they could relate to her. They were sharing their own stories.

R. WITHERS: I still always, like, felt a loneliness, you know, up until that point. And it really, like, kind of helped that go away, and be like, oh, my God, there's so many people. And you're just like, wow. I have all these people who - yeah, are going through the exact same thing, who grew up seeing faces, who grew up hearing voices, who have these thoughts that they don't know why they have them. And yeah, it just definitely made me feel not so alone.

CHEN: That first video got over a 114,000 views. One of the first people to see it was Don Moore from Portland, Ore.

DON MOORE: I saw that, and I said, wow. That is so much like my family and my daughter and our experience.

CHEN: Don's daughter Tracy has schizophrenia. She was diagnosed a few years before Rachel released that first video. And Don was struggling to understand how the disorder affected his daughter. He says, as he watched Rachel's YouTube video over the years, she helped unlock that for him.

MOORE: Now you could get a window into the mind of a person - you know, a young woman who is going through this. And she was very descriptive about what was happening in her. And my daughter was not. And that helped me understand what I was seeing on the outside of my daughter. And it just helps you understand it. It's just tremendous.

CHEN: Like Rachel's mother predicted, these videos pop up whenever someone searches Rachel. Now that she's got over 50 mental health videos online, simple searches like ask a schizophrenic can get you to her channel pretty quickly.

JULIA BILLINGSLEY: That's actually how I found Rachel's videos.

CHEN: That's Julia Billingsley. She's a 22-year-old from Peoria, Ill. When the symptoms were developing for her, she thought she might have the illness. In her web-searching frenzy, she found Rachel Star.

BILLINGSLEY: And it's kind of weird. I would just click through all her videos. I don't know, seeing all her videos and, like, listening to her coping mechanisms and, like, how much willpower she has really made me stronger. Like, she made a video about depersonalization. And so when it did happen to me, I was like, OK. This is just depersonalization. I just need to calm down and ride it out, and I'll be fine.

CHEN: This kind of community is something that people like Julia and Rachel can offer each other. It's not something they can get from their doctors or therapists. Jacqueline Phillips-Sabol is a neuropsychologist who's seen a lot from Rachel's channel. The two actually met online many years ago, after Rachel started making the mental health videos.

JACQUELINE PHILLIPS-SABOL: As a professional, I am the better person to help them to deal with certain aspects of it. I'm the better person to diagnose them. I'm the better person to advise them as far as medications. But I can't be inside of their skin and explain to them, you know, or relate to them on how it feels to experience symptoms the way that Rachel can.

CHEN: But Phillips-Sabol says it's important to note that while the videos bring people together, it's not a medical treatment. A lot of people with serious mental disorders need medication. And they need to work that out with their doctors. Rachel tried a lot of different prescriptions after she was diagnosed. Some of them helped. Some of them didn't. She got electroconvulsive therapy in the end, a treatment that sends electricity through the brain. She says she's been a lot better since then. But she knows the symptoms are never going away. There's one in particular that really worries Rachel. It's when she loses touch with her sense of reality and her sense of self.

R. WITHERS: It's like I'm not - I'm not really there. I'm, like, kind of looking through myself. Like, I'm kind of talking in third-person. And it's like - yeah, there's just - something is different. And I don't know how to make it go back to normal.

CHEN: Rachel still doesn't know how to help herself when she feels she's losing touch with reality.

R. WITHERS: It's kind of like I start, I guess, losing control a little bit.

CHEN: There's so much about your disorder that you do seem in control of. But this seems like something you can't or don't have control over.

R. WITHERS: No, yeah. No, not at all. And I don't make - it's one thing people always say - oh, film a video when you're like that or film a video when you're hallucinating. I'm like, because of that there would be no filming. It wouldn't be, like, a possible thing.

CHEN: Well, what was scary about it?

R. WITHERS: I know this isn't right. And I don't really know what to do to make it right again. You're lost, and, like, you just - because you think, like - and there's no rationalizing, you know? I know my arm isn't crawling away from me. But, like, I'm grabbing at it. I'm trying to feel it. I can't feel it. I feel it moving. You know, it's just all these things are, like, hitting at once. And it's hard to kind of, like, grasp, I guess. Because yeah, there is no - there's no logic in that state.

CHEN: One of Rachel's greatest fears is getting stuck in this state and never coming out. But it hasn't happened yet. And she doesn't let the fear of it happening change how she wants to live.

R. WITHERS: And no, I don't. I have, like, things - I have more so goals that I want to do, like, just traveling, creating. Like, I just want to have, like, a [expletive] life. And that's why I'm just trying to do cool things when I can.

CHEN: She pushes through. And she does travel a lot. When I left her that day, Rachel was getting ready for her next adventure, this time in Atlanta. Angus Chen, NPR News.

(SOUNDBITE OF MUSIC)

INSKEEP: This story is part of a collaboration with member station WNYC's "Only Human" podcast.

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