Rachel Star Withers runs a YouTube channel where she performs goofy stunts on camera and talks about her schizophrenia.
Since 2008, when the then 22-year-old revealed her diagnosis online, tens of thousands of people have seen her videos. Some of them have a psychotic disorder or mood disorders themselves, or know people who do.
They say her explanation about what a symptom like hallucinations feels like can be really helpful. So can Rachel's advice on ways to cope with them, like getting a dog or a cat. If the animal doesn't react to the hallucination, then it's probably not real, she says.
We talked with people about how Withers' videos have helped them understand these diseases. What follows is a Q&A with two of these people. The interviews have been edited for length and clarity.
Julia Billingsley is 22 years old and from Peoria, Ill. She learned she has schizophrenia last year, but she says her earliest encounter with the disease was back when she was very young. Her mother has schizophrenia, too, Billingsley says, and often had a delusion that their home was bugged.
Julia, you started developing symptoms last year. Do you remember the first thing that happened to you?
I'd just started dating my current boyfriend. And I'd be over at his house and I'd go to the bathroom. And this thought, this intrusive thought that wasn't my own at all would pop into my head like with force. And it would be like, hey. This room is bugged. And I was like, what? It made me stop. I stopped what I was doing and I didn't understand why my brain was thinking that.
Then it clicked. This might be a symptom.
That's actually how I found Rachel's videos. I knew what was happening to me, and I got obsessed. I had to know everything about it. And I came across her videos. It really put a name and a face to everything I was going through. It showed me I wasn't alone.
Sometimes I would just click through all of her videos and I would find a video on something I had no idea about. Like depersonalization [feeling disconnected from yourself]. And it prepared me in a way. So when it did happen to me, I was like this is just depersonalization. I just have to ride it out, and I'll be fine.
Seeing the videos and knowing that Rachel had made it through that too, did it make you feel safer?
No, not safer. Just stronger. Schizophrenia is so smart in a way. I had a delusion where I thought my boyfriend wasn't my boyfriend. I thought he was a doppelganger or something. I started rationalizing like, this is just a schizophrenic thought. And it turned around and was like, that's just what he wants you to think. And just seeing all of Rachel's videos and hearing her coping mechanisms really made me stronger.
You say you actually had to hide your disorder from your family. Did the videos sort of stand in as a support system in a way?
Yeah. Growing up, [schizophrenia] was the root of all evil in my family. And my boyfriend, bless his heart, he is amazing. But he has no idea. He can try, but he can't even comprehend what it's like. So when you come across someone who goes through the same exact thing as you — it's — you don't even have to explain it. It's like one word, and they're like, oh yeah. Me, too. Definitely seeing other YouTubers, especially Rachel, it's definitely a support system.
Don Moore is 64 years old and from Portland, Ore. His daughter has schizophrenia and was diagnosed in 2003. A few years later, a friend of his saw Rachel's first video, Normal: Living with Schizophrenia, and sent it to him. "I saw that and I said, wow. That's so much like my family and my daughter and our experience," he says.
Don, what did it feel like when you first saw the videos?
Oh, I was in tears. Mostly I watched it myself. I watched it multiple times. It kind of changes you. You always hear the story that you're not alone. Well, in this case, truly, truly I was not the only one.
That [first video] was fascinating, when I saw her with her parents and talking about some of the difficulties. The parents would say wow, she'd be great and really wonderful and turn around and it would be like, whoa, who is this? I could relate to that. It's very hard to find someone who has a commonality of experience. And Rachel's' videos at first were like, wow. OK. Now I have something to see and something to compare with.
When you watch Rachel's videos, does it help you recognize when your daughter started getting symptoms?
We noticed something wrong from birth. Whenever she would wake up, she would scream at the top of her lungs. One night this happened, my wife's sister was staying with us and she came over. My wife was rocking Tracy to sleep, and her sister said, what are you doing to that kid? It sounds awful. And Pamela said, I'm trying to comfort her.
And when I listen to Rachel describe her childhood, visualizing monsters and being disturbed or bothered by certain kinds of things, I could relate to that. That helped me understand some of the things I saw when I was with my daughter and I couldn't put my finger on exactly what they were.
What helped, exactly?
Rachel was good about explaining how she felt, what she was going through. My daughter tended to hide that. But now you could get a window into the mind of a young person who was going through this, and she was very descriptive about what was happening in her. My daughter was not. That helped me understand what I was seeing on the outside of my daughter. It helped me break through. It just helps you understand it. It's tremendous.
Think about this. You're trying to raise this kid and get them through high school. And at graduation, she didn't walk across the stage because she freaked out and did something else. She'd go off on standardized tests and be really brilliant, and then couldn't figure out how to do something really simple. And so you're sitting here, scratching your head, going why is this? It makes no sense.
Because you've been told by mental health professionals, oh, she doesn't have schizophrenia, that's really serious stuff. She's just depressed or whatever. You're sitting here trying to figure it out. When you have Rachel here talking about it, you just go, oh, OK. And it's part of a key that just helps unlock it.
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. Transcript provided by NPR, Copyright NPR.