Would You Tell The World You Have Schizophrenia On YouTube?

Jan 27, 2016
Originally published on June 14, 2016 3:33 pm

Editor's note: The web version of this story was first published on Shots in January. Next week, come back to Shots as we explore how Rachel Star Withers' YouTube channel has affected other people who have schizophrenia or have a loved one who does.


When she was 22, Rachel Star Withers uploaded a video to YouTube called "Normal: Living With Schizophrenia." It starts with her striding across her family's property in Fort Mill, S.C. She looks across the rolling grounds, unsmiling. Her eyes are narrow and grim.

She sits down in front of a deserted white cottage and starts sharing. "I see monsters. I see myself chopped up and bloody a lot. Sometimes I'll be walking, and the whole room will just tilt. Like this," she grasps the camera and jerks the frame crooked. She surfaces a fleeting grin. "Try and imagine walking."

She becomes serious again. "I'm making this because I don't want you to feel alone, whether you're struggling with any kind of mental illness or just struggling."

At the time, 2008, there were very few people who had done anything like this online. "As I got diagnosed [with schizophrenia], I started researching everything. The only stuff I could find was like every horror movie," she says. "I felt so alone for years."

She decided that schizophrenia was really not that scary. "I want people to find me and see a real person." Over the past eight years, she has made 53 videos documenting her journey with schizophrenia and depression, and her therapy. And she is not the only one. There are hundreds of videos online of people publicly sharing their experiences with mental illness.

In her early videos, Withers glowers. She tried to give off an aura of toughness befitting the daughter of a Hells Angels biker. But there's also a sense that terror is a deep undercurrent in her life. "All right, let's go," she says in the video "Watch If You Forget," where she documents getting electroconvulsive therapy for depression. Then, in the next few seconds, "I'm about to start the electroshock therapy and, yeah, I'm pretty nervous."

Things have changed a lot since then. Now, almost all her videos open with Withers flicking her black curls, arms raised with swagger: "Hey, what's up! I'm Rachel Star!"

That public sharing of mental illness might be making a huge impact on the way our society views these disorders, especially for those of us who are digital natives. Millennials tend to be more comfortable talking about mental health issues, according to a poll released Jan. 14by the Anxiety and Depression Association of America, along with two national suicide prevention foundations.

When it came to seeing a mental health professional, for instance, 48 percent of survey respondents between the ages of 18 and 34 said that it was a sign of strength. About 35 percent of all prior generations felt the same way.

"Our young people are accepting that mental health problems exist, and they want help for it, and they are not looking at these things as something to be ashamed of," says Anne Marie Albano, a clinical psychologist at Columbia University who is on the board for the ADAA.

She thinks that social media and videos like Withers' have helped lower stigma around mental illnesses. "Young people take advantage of this," Albano says. "It gives the opportunity for people to tell their stories and post images. This allows them to feel more hope than prior generations."

There might be other reasons young people are less concerned about stigma surrounding mental illness. Perhaps as you age, your outlook becomes more pessimistic, says John Naslund, a Ph.D. candidate at the Dartmouth Institute for Health Policy and Clinical Practice who studies social media and mental health. He notes that the ADAA poll found that a higher percentage of older adults than young people didn't believe that something like suicide could be prevented. "Maybe they've been through this before and have had people close to them take their own lives."

He hopes things really are getting better. "It's very possible. That would be a very exciting change in the way society views mental illness," Naslund says. But the problem has not been solved. Even if information moves quickly, change is slow. "It's really important to acknowledge that people who have a serious mental disorder still face a lot of stigma," he says.

When she was younger, Withers struggled with a lot of shame and humiliation over her disorders. "For so many years, I felt like a freak," she says. Part of that was the religious community she had joined. "Think militant Christian. Like a militaristic type," she says. When she was 17, she graduated from high school early to attend the former Teen Mania Ministries Honor Academy in Dallas. "I honestly thought that's what God wanted me to do."

At the same time, her mental condition was deteriorating. She says her schizophrenia was starting to emerge and transform into something unmanageable. The counselor at Honor Academy diagnosed her with depression and prescribed pills. They didn't help. Eventually she told them about her hallucinations. "This being a Christian place, they decided I was possessed by demons."

For three days, Withers fasted. Each morning, she met three of the school's spiritual advisers, and they spent the day performing an exorcism in a closed room. They read Bible verses, and Withers confessed to everything she could think of that might be construed as a sin — even watching demon-related TV shows like Buffy The Vampire Slayer.

At the end of the crucible, Withers was on the floor, exhausted. "I was young and here are these people who, you know, I'm told are close to God. I was like ... OK. It must be right," she says. "Surprise! It didn't work. I spent six more months there as an outcast."

Reducing this kind of stigma is a fundamental reason Withers continues making videos. She wants others to see those struggling with mental disorders with more compassion, and she wants people with a mental diagnosis to see themselves more positively.

After she posted her first video, Withers says, "People just come out of the woodwork emailing me, messaging me. The friends I've had the longest time, even people I've never met in real life with schizophrenia and like disorders. We just started talking." She got invited to mental health forums and to mental health support groups on Facebook.

"Thank you for these videos. They really help me to better understand my sister," YouTube user Kathryn Hatzenbuhler posted under one video.

These online communities are an important part of Withers' life now. "Whenever I'm posting on Twitter, I'll put #schizophrenia and #schizophrenic. I'm hoping to find other people who are having problems," she says.

Withers ended up making a coloring book for kids with schizophrenia, and she shares ways she has figured out to deal with her visions and voices.

Via webcam, she showed me two askew mirrors in her room that can be angled away from the viewer. "People with mental disorders don't do well with mirrors. I just start hallucinating," she says. "It's real hard putting on makeup, you have to imagine. Having the mirrors at an angle helps."

In one video, she talks about walking up to one of her hallucinations to touch it, and that alone took away some of the fear. "It's kind of something to help you get used to your hallucinations, so you know how to respond, because the voices are always horrible. The voices are never like, 'Oh my God, you look so good today.' "

There's no hiding her disorder from anybody on Facebook, so people she knew in real life started finding out. It caused her pain at some jobs ("This one girl was like, 'Oh she's crazy. I'm not working with her.' "), but it also led some people to talk about their own or their family's experiences with mental disorder. "They'll be like, 'So ... I saw your post, Rachel. I had a question.' "

Researchers think there's a potential gold mine of mental health benefits in exchanging messages and encouragement online like this. "Social support is always the No. 1 variable that predicts a better prognosis and better care management of anyone's illness," Albano says.

It's a small leap from there to think that participating in mental health-focused communities on YouTube and Facebook might actually be making people healthier and preventing suicides. "That's probably absolutely correct," says Patrick Corrigan, a professor of psychology at the Illinois Institute of Technology. But scientists are only just now beginning to measure the effect social media might have on clinical outcomes. "It's quite a new area of thinking, online peer-to-peer support for mental illness," Naslund says.

But there's an obvious downside to being public on social media about mental health problems. "Say I have a network of friends and I have a breakdown one day. It will spread through social media, maybe in negative ways," says Michael Lindsey, a professor of social work at New York University. That could be through someone's real social groups, like at work or school, or it could be anonymous, via Internet trolls. For those already depressed, anxious or paranoid, cruel comments and messages could have a terrible impact.

But in Naslund's research, he says that problems with online attacks have been extraordinarily rare. "If someone did post a derogatory comment, seemed a little harmful, other people would come to the defense and say, 'Don't listen to that,' " he says. "[Social media are] way more supportive than we imagined."

According to Naslund, the benefits seem to vastly outweigh the harms. "That's clear in the literature," he says.

And Withers agrees. She doesn't think that people with mental health problems usually go on social media and spiral out of control even more. "I'm sure it happens somewhere on some area of the Internet," she says. "But I think usually when I'm feeling depressed and stuff, but then I see someone else thinking of hurting themselves, the opposite kicks in. It's like, no. You have so much to live for. You're able to pull yourself out in a way to help someone else."

When Withers does get trolls, she blocks them. "Anything remotely violent towards me gets blocked," she says. "Like — I'm not going to respond to that. Don't call me that word."

Still, she cautions others to think carefully before coming out to the world about their mental illness. It can be dangerous, she admits. She says she gets phone stalkers and death threats. But she is still glad that she did it. It's uncomfortable for her to think what might have happened if she never went online about her depression and schizophrenia. "I see myself being a lot more closed off," she says. "I hope I would have found other people's videos."

Withers attributes a lot of her transformation to electroconvulsive therapy. She says it knocked out a lot of her deep depression. And Withers thinks sharing on the Internet has also helped. "It helps me to vocalize it and put it all out there," she says, and it makes her feel like she is less "broken and sick" when other users empathize with her online.

Recently, she posted a video to YouTube called "There Will Be Beautiful Days." It's short, reaching just past a minute long. Withers smiles and says she knows things are hard now. Maybe harder than they've ever been. But it's going to be OK. And at some point, you'll have some good days. Maybe even just one great day, but it'll be enough. It will make life worth fighting for.

For more on WNYC's Only Human podcast series on mental health, check here. You can stay in touch with @OnlyHuman on Twitter and @Only Human on Facebook.

Copyright 2018 NPR. To see more, visit http://www.npr.org/.

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." Transcript provided by NPR, Copyright NPR.