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From Facebook memes to gaming platforms: Where college students turn when they can’t discuss mental illness on campus

Even as the conversation around mental health opens up on college campuses, students struggling with less common mental illnesses and those from racial minorities say their experiences are often missing from the mainstream discussion. Instead, they turn to online forums, chat rooms and social media groups to find the community they lack on campus.

Riana Kaempen is a 21-year-old in her senior year at Robert Morris University Illinois, who has been diagnosed with borderline personality disorder.
Riana Kaempen is a 21-year-old in her senior year at Robert Morris University Illinois, who has been diagnosed with borderline personality disorder.Read moreCourtesy Riana Kaempen

Like many college students, Riana Kaempen follows meme pages on Facebook for a good laugh. One of her favorites is Bob the BPD Bird. It's not just a source of entertainment but a way of coping with her borderline personality disorder, a mental illness that causes unstable moods and behavior.

"A lot of times people find mental health memes — especially ones that reference suicide — to be in poor taste," said Kaempen, a 21-year-old senior at Robert Morris University Illinois in Chicago. "But for people who suffer through it, it can be such a source of comfort."

Memes — images, videos, and text that become popular and spread rapidly on the internet — help build a sense of community around shared life experiences, from the everyday struggle of waking up early to the life-changing experience of becoming a parent.

They are just one part of the online community Kaempen has joined, along with others diagnosed with borderline personality disorder. In Facebook groups, they share what they can't discuss openly at college or work — how the disorder affects their sex lives, how dark thoughts sometimes become overwhelming. They trade advice, too, like how to regulate moods through color breathing, a technique in which you visualize your emotions as different colors as you inhale the ones you want and exhale the ones you don't.

More than 700 miles away in Philadelphia, Brian, a student at the University of Pennsylvania, takes haven in a similar online community. He asked to withhold his last name because he hasn't told family and friends about his symptoms of borderline personality disorder, fearing stigma.

In fact, Brian hasn't found anyone he feels comfortable talking to on campus, despite the presence of several student groups focused on mental health. Instead, a few times a day he logs on to Discord, a website that began as a chat platform for online gamers but has evolved to include discussion channels on mental health. Brian participates in one focused on personality disorders.

"Before getting into these groups, I just kept my thoughts to myself," he said.

Even as the conversation around mental health opens up on college campuses — with more students than ever seeking treatment for anxiety and depression — students with less common illnesses say they're being left out of the discussion. Instead, they turn to online forums, chat rooms, and social media groups to find the community they lack on campus.

A Hopelab national survey released this summer found about 40 percent of teens and young adults have gone online to try to find people with health conditions, both physical and mental, similar to their own. Fifteen percent say they have shared their own health experience online.

"Sometimes it's just nice to find someone else going through it to say, 'Oh, it's not just me,'" Kaempen said. People with borderline personality disorder are often seen as manipulative or uncaring, like the title character in the TV show Crazy Ex-Girlfriend, she explained.

That's why the anonymity of online communities can be a big draw, said Nance Roy, chief clinical officer at the Jed Foundation, which focuses on youth mental health and suicide prevention. But anonymity also poses risks, as some people might feel emboldened to spread misinformation or encourage dangerous behavior by, for example, sharing ways to cover marks of self harm. Also, if someone expresses suicidal thoughts anonymously, it can be difficult to get them emergency services, she said.

But online communities provide an important option to help people understand they are not alone, Roy said. They're not a replacement for therapy, but "the more pathways we can provide for people to get support, the better," she said. "It's how we're going to catch more people who may otherwise fall through the cracks."

‘Someone who looks like me is also going through this’

It's not just students with stigmatized disorders who turn to online communities. The internet also provides a space for students who are working and can't make it to in-person support groups, those who are homebound by disability or can't afford transportation, and students of color who feel isolated.

Nina Rondon is a 24-year-old Latina woman who grew up in a conservative Christian family in Brooklyn. She has suffered from anxiety and depression for several years but initially didn't know how to describe her experience.

"Especially in the Latinx community, you don't want to say you have depression," Rondon said. "You don't get treatment. You pray about it."

She first heard the phrase "mental health" when she went to Syracuse University. During her senior year, she began having frequent panic attacks, and they continued after graduation.

Rondon started blogging about her experience and soon joined The Mighty, a digital health community with millions of users.

"When my first article on The Mighty got hundreds of likes, I was so confused," she said. It was the first time she realized there were other people who understood what she was going through.

Research shows there is a higher prevalence of some mental illnesses among students of color than white students, and they are also less likely to seek help.

Some distrust the medical system based on the mistreatment of people of color throughout history, said Alfiee Breland-Noble, senior scientific adviser to the Steve Fund, a nonprofit focused on mental health for students of color. Others don't want to add a mental health diagnosis to factors that already make them a minority.

Online communities provide a way around those obstacles.

Kimson Johnson manages a people of color forum, with more than 4,600 members, on the online therapy and support platform 7 Cups. They discuss the effect of stereotypes on mental health, feelings of isolation as minorities, and more.

"Having that space would have been helpful when I was in college," said Johnson, 30. As an undergraduate at the University of Michigan, she had a friend disclose suicidal thoughts to her. The friend, who was black, knew about resources on campus but felt they wouldn't understand her, Johnson said.

Daphne Watkins, director of the YBMen Project, which engages black male college students in private Facebook groups to discuss mental health and masculinity, says these students often feel overlooked.

"Over and over again we kept hearing them say, 'No one ever asked us about mental health,'" she said.

When given a private online setting, though, they are able to open up, Watkins said. Preliminary results from the YBMen pilot project at Jackson College in Michigan found depression scores decreased among participants.

In Philadelphia, Nadia James launched an app called RevivAll in 2016, aiming to connect patients with chronic illnesses, including mental health conditions. It's been especially popular among young people in minority communities, James said.

The app currently has specific channels for anxiety and depression, but James said they've gotten requests to start ones for bipolar disorder and borderline personality disorder, too.

"People want to see that someone who looks like me is also going through this," she said.