Leanne DeLong was pregnant, and her spine was melting. In the months before her first child arrived, she developed an uncomfortable amount of pain. But her doctors didn’t take notice until she lost feeling in her leg. Body scans revealed transverse myelitis, a condition that led her body’s immune defenses to eat away at the nerve fibers in her upper spine. Frustration, anxiety, and guilt mounted as she annexed more and more of her independence to her loved ones.
All of which I learned from watching DeLong's four-and-a-half-minute video on Your Voice.
Launched by the anonymous social media app Whisper, the non-profit Your Voice is a video hangout for those who want to talk about their experiences with mental illness. You click a button, submit your first name and age—both requirements for posting—and then upload a video about your experience. By creating a video library of personal struggles, the platform aims to raise awareness about mental health.
I felt mild self-disgust as an uninvited voyeur of people seeking communal solace. Then I grew concerned that this vulnerable community could be exposed to the dregs of the Internet (read: trolls) in service of a company’s brand.
Each heartfelt story spilled from my laptop as I watched the catalog over a recent weekend. Jade, 18, recounts being depressed from the age of seven, a state that ultimately evolved into cutting, drug addiction, and eventual recovery. Or there’s Marcus, one of the founders of Your Voice, who overcame the anguish of a hit-and-run that broke both of his legs and killed a college friend.
The videos provoke the sort of feelings that you might expect. As someone who has loved a sister with bipolar disorder, empathy welled inside me. I felt mild self-disgust as an uninvited voyeur of people seeking communal solace. Then I grew concerned that this vulnerable community could be exposed to the dregs of the Internet (read: trolls) in service of a company’s brand.
Since its birth, Whisper has flourished as a sanctum for anonymity, but the start-up drew scrutiny and scorn last fall, when the Guardian reported that the app archives potentially identifiable information and user locations, even for those who opt out of geotracking. “Your Voice does help Whisper’s perception, especially given last year’s revelations about how they violated people’s trust with their data tracking,” says University of Maryland computer scientist Jennifer Golbeck, who studies how people use social media.
But Your Voice’s broad terms grant the company license “to use, reproduce, distribute” user videos in “operations” connected with the platform, its successors, and affiliates. A representative of Your Voice did not make herself available for comment.
Regardless of my intrusion or Whisper’s reputation, Golbeck regards Your Voice as a platform that is in high demand. Mental health communities have blossomed on YouTube, she says, while other outlets like PostSecret host supportive forums for suicide prevention and mental illness.
“Prior work shows that people with mental illness are more likely to voice personal views via online social media than those without mental illness,” says Dartmouth health policy researcher John Naslund. “But it isn’t totally understood why somebody with a highly stigmatized illness would feel so open to sharing online.”
To figure it out, Naslund and his colleagues surfed YouTube to find people's posts about severe mental illness. They searched for videos that mentioned ‘‘mental illness,’’ ‘‘schizophrenia,’’ ‘‘schizoaffective disorder,’’ or ‘‘bipolar disorder,’’ yielding almost 750,000 hits. They picked the first 100 from each category, and then scanned over 3,000 comments to glean the benefits and risks of anonymous feedback.
The video comments served as a venue for peer support, according to their recent report in PLoS One. Moreover, the feeds tend to fight back against Internet trolls.
Many posters voiced feelings of social isolation and relief at finding someone with a kindred experience, and anonymity appeared to lead people toward more comfort with disclosing the graphic realities of their situation:
Comment on Video #2: video uploaded by female with schizoaffective disorder
Sometimes i get anxious as fuck and angry as shit for no reason. i chain smoke two packs worth of cigarettes a day that i handroll myself. The medications made me a fat bastard at 310 pounds and i cant keep up my grooming worth a shit. i still manage to hold down a job and i still live in a group home. there thats my fucking life story. your welcome everyone:)!
“People also use the medium to learn about coping strategies and how to deal with day-to-day challenges,” Naslund says.
In cases where Internet trolls invaded the group, the commenters banded together to silence the hate. Derogatory and discriminatory comments were spotted on five percent of videos, but the community often supported the poster by flagging the offense or writing a direct reply. This positive communion runs contrary to the norms of Internet commentary. Usually, anonymity drives cyber aggression.
Naslund doesn’t know if YouTube’s trend toward positive peer support provides subsequent catharsis—his team is currently reaching out to video posters—but the herd definitely tries to protect its own.
Your Voice, to its credit, insulates against rude feedback by forgoing a comments section or link sharing buttons.
“Without a sharing function, the videos feel more ephemeral,” Golbeck says. “There’s no permanent link to lead people back to where it’s posted.”
“Health privacy rights on social media are meaningful safeguards. Without them, you might as well give up because you'll ruin your product.”
Some users still seek a conversation, by mentioning a personal blog or contact info, but it’s ultimately their freedom.
“I like hearing from total strangers,” Your Voice user Nicolle Dupas told me in an email. Her mental wellness outreach—on her blog and YouTube channel—caught the attention of the company, which contacted her directly and asked her to submit a video. “It's just about creating a community where we can all support each other, spread the word, and educate people who want to understand,” she says.
Even without shareability, a video outlet for mental illness raises the privacy and ethical concerns that always surface whenever anyone shares health information on the Internet.
“Health privacy rights on social media are meaningful safeguards. Without them, you might as well give up because you'll ruin your product,” says Joshua Landy, a doctor who co-created Figure 1, a photo-sharing platform where health care professionals post pictures of unique medical cases. Before any computer code was written for Figure 1, Landy and his partners spoke with lawyers about how to maintain patient privacy. Doctors use photo-editing tools on Figure 1 to remove blemishes or body marks that could identify a patient. Uploaded photos are then evaluated by an internal review board to assure patient anonymity before posting.*
Landy says privacy on mediums like Your Voice operates in a gray area. When sharing in a health care setting, privacy restrictions are paramount because of the vulnerability of your patients, but outside a doctor’s office, people are free to do what they want with their own medical narrative. “It's your info, and you're giving it away because you wish to share it,” Landy says.*
When he first learned about Your Voice, it felt like a really great step forward because people could get community support in moments when they needed it. People who feel isolated are often at a greater risk for mental illness, and people with mental illness frequently feel isolated.
Still, as with any social media, it is easy to overlook vultures. A pharmaceutical company may try to sell drug ads on YouTube videos that mention mental health. A divorce lawyer might use a Web confession about depression to win custody rights. Or a journalist might see an opportunity for a story.
Your Voice offers communal solace, but the onus of whether or not to revere or exploit its videos falls ultimately upon the host and individual viewers.
Those thoughts floated through my mind as I skyped with DeLong.
In a digital biosphere, where social media startups sprout like daisies, she hadn’t even heard of Whisper, its privacy drama, or the app’s connections to Your Voice.
For her, Your Voice served as a means to accept grief and vent frustrations, which are reflexes that linger in most of us on social media.
“After four years of feeling alone with transverse myelitis on top of pre-existing depression, I reached a point of acceptance, realizing that these health issues won't go away,” DeLong told me. “I had to do something to cope. That decision was to start opening up.”
*UPDATE — March 02, 2015: This post has been updated with the correct spelling of Landy's surname.