When Jessica posts photos of her bathroom on Facebook, I don’t notice anything unusual. She had renovated the dark spaces of her Brooklyn brownstone, replacing the dismal lighting and stenciled decorative flora with a fresher color.
It’s a popular post — about 50 of friends like it. And I tell her she can quit her job as a programmer and become an interior decorator.
Then, Jessica re-arranges the furniture. Then, she re-does the backsplash in the kitchen. Then, she re-varnishes the cabinets, a laborious process that involves sanding off the old finish and applying two to three coats of paint. She begins to replace or reupholster the furniture in her living and dining rooms, or buys appliances altogether.
Jessica even replaces all the lamps.
All of this, of course, is documented on Facebook. And friends compliment her on the good taste and hard work.
“Where do you find the energy?” one friend writes. “You must be brewing some mojo with that new espresso machine.”
“Are you on vacation?” jokes another. “All I do with my time off is binge-watch Netflix and sleep in. You’re making us all look like bums.”
When mutual friends gather over drinks, we wonder how Jessica can afford to redecorate. Maybe she took out a home equity loan. But where does she find the time? Hadn’t she come back from a long vacation to Hawaii?
Not long after the conversation, Jessica’s posts go quiet. With the endless stream of content, I don’t notice her relative silence. I figure she returned to her busy, demanding job. Then, weeks later, a friend texts me.
“Did you hear about Jessica?” she asks. “She’s in the hospital for a previously undiagnosed bipolar disorder.” The decoration spree, apparently, was the beginning of a manic episode, which blew through Jessica credit cards and savings. She fought with her worried husband, took an impromptu road trip and somehow ended up at her parents’ home in Ohio. Then, she committed herself to the hospital.
I go on Facebook and look at her profile. Suddenly, the string of decorating posts no longer seems like a beautiful album of creative accomplishments and luxurious purchases. They are veiled records of a breakdown — and I had missed the signs completely.
Social media is second nature to us, and we tweet, check-in and update in real-time, do we even know the signs of a mental illness over Facebook and Twitter? More importantly, what can we do when we think we see one?
I ask friends if they’ve witnessed mental illness on social media, whether a series of depressed tweets or updates, or a stream of bizarre comments and observations. Surprisingly, most of them had a story.
But the numbers shouldn’t surprise me. In fact, one-in-four Americans will struggle with some form of mental illness during their lifetime, according to the National Institute of Mental Health. It ranges from low-grade dysthymia and post-partum depression to post-seasonal affective disorder to schizophrenia and bipolar disorder, formerly known as manic depression.
Even if you haven’t suffered an illness, chances are you know someone who has. Or maybe you know someone without realizing it as well — many sufferers keep their illnesses under wraps, or suffer undiagnosed.
Despite the numbers, a social stigma still exists around mental illness, despite — or perhaps because of — our more sophisticated understanding of it. We once thought of illnesses as the primary result of disturbed pasts or family backgrounds — many illnesses, for example, were blamed solely on bad parenting, abuse or some kind of major trauma.
Now that we’re more aware the brain’s role in the expression of mental illness, and while that knowledge have proven helpful, as a result many also believe mental illnesses are, at the root, incurable brain ailments that can only be managed and controlled with chemical interventions.
Under this lens, a mental illness is a lifetime sentence.
But it’s coming out of the closet, so to speak, especially as suffering record, document and share experiences on the Internet. Forums, blogs and websites have long existed, where empathetic communities gather to lend support, understanding and resources and share experiences.
That’s how I met Jessica in the late-90s. We were part of an online network of sensitive, creative teen girls. Members exchanged handmade, photocopied “zines” and letters with one another. When e-mail and “surfing the Web” became a “thing,” we all began to build and exchange website and e-mail addresses.
Jessica’s zine and personal website centered on her experiences with depression and sexual assault as a teenager. She was an intelligent, poetic and analytical writer, able to connect her emotions with her background and the culture around her. She turned a traumatic experience into writing that gave others hope, strength and clarity. Even if you didn’t suffer from depression or trauma, her writing helped you empathize.
Over the years, we exchanged zines, e-mails, artwork, mix-CDs and letters. If we were in the same city, we met up. And as the Internet grew in importance, we always friended one another on the latest service: Friendster, MySpace, Facebook, Twitter, Tumblr, whatever.
She wasn’t what I’d consider a close friend, but over the years, she became a part of the texture of my everyday life. I saw her deal with depression and evolve into a successful adult — complete with career, relationship and home. I even sent her a wedding present, happy that her own intensive efforts in therapy and life paid off so well.
Or so I thought. As her spree of Facebook home decoration and road trip posts show, she has entered a new, challenging phase in her struggle with mental illness. Now I — along with her friends from the years — wonder what’ll happen to her next.
While we wait to hear from or about Jessica, we wonder if there is anything we can do, or if there are signs we miss that would’ve flagged her behavior and given her help sooner.
Facebook actually offers a guide that helps people look out for signs of depression or emotional struggle. The advice seems like common sense: users should watch out for updates, hashtags or content talking about feeling isolated or alone, or indulging in reckless, uncharacteristic behaviors like drugs or drinking binges. You should also keep an eye out if friends begin to miss everyday activities like classes or jobs, or like posts that encourage negative behaviors.
If you notice a friend sinking into uncharacteristic negativity, the company encourages you to reach out, either in person, on the phone or even in a Facebook message, asking if they’re okay or need someone to talk with. Be careful not to just “like” a post or reply with an emoticon, which can be interpreted as a flippant response.
Starting these conversations can be difficult. Facebook suggests beginning with a prompt such as, “I’m worried about you because you seem…” and then being specific about what you saw that caused your red flag to go up.
The company also cautions people to always take it seriously when someone says they want to harm themselves or another person. In these more urgent cases — or in cases where they’re expressing sentiments of rage, revenge or other intense emotions — bring friends or loved ones to the emergency room or call 911. You can also contact the National Suicide Prevention Lifeline, or report the image or post directly to Facebook, which has dedicated teams to review content and then find and connect the necessary resources.
But Jessica’s posts didn’t fit into Facebook’s neat scenarios, except for the fact that they seemed a bit out-of-character — which points to a problem with the guide, and assumptions about mental illness in general. They assume people express depression or other acute feelings of psychological distress in linear, clear ways. But it’s sometimes difficult for people bogged down in depression to have the self-awareness to even say or admit, “I need help.” Sufferers are often so overwhelmed by emotion that they can’t even articulate feelings at all.
Cries for help are not simple. A glance through a typical newsfeed reveals people communicate and behave on Facebook in almost non-verbal ways: we have patterns of liking things, for example, or we may post only news items or photos or videos. We need to pay close attention to not just words, but behavior, when it comes to keeping an eye out for our friends on social networks.
Part of the problem, however, is the real-time, dispersed, random nature of social media itself. It makes it difficult sometimes to see patterns of behavior or strange expressions. When posts by friends compete against ads, videos, news links and other bits of information, can we detect the distress underlying more subtle postings?
When looking at Jessica’s entire profile — along with knowing her and her past history — it was easy to see the underlying manic behavior chronicled on her posts. But when broken up into pieces and scattered with other information in a timeline, it’s harder to discern — unless we knew what was already there.
Beyond giving clues to a person’s state of mind, social media can sometimes amplify aspects of mental illness. Facebook can causes sufferers to compare themselves to others — an effect psychiatrists call “discrepancy monitoring.”
While we all fall prey to discrepancy monitoring now and then, a depressed person may descend into despair, especially as newsfeeds and timelines give a snapshot of the world where friends are healthy, happy and normal. They may be intellectually aware that social networks present only the best bits of experiences, but emotionally, they may feel something different entirely. And that gap deepens the despondency, as they ask themselves why they can’t just lighten up, be normal and be happy like everyone else?
Some are using social media, though, to help the mentally ill get help. The real-time, as-it-happens nature of social media — and its ability to record raw, unadulterated thoughts and experiences — helps some psychiatrists treat their patients, helping clinicians and doctors form a more complete profile of their patients, according to the University of Missouri.
Part of the problem with treating many illnesses, particularly mental ones, arises from the distortions in patient self-reporting. Patients grappling with paranoia, for example, may choose to lie or hide parts of their communication, hindering doctors’ ability to treat them.
The Missouri researchers, however, were able to detect and pick up social media patterns correlating with some aspects of mental illness, such as social anhedonia or schizotypy. And even if study participants hid or obfuscated aspects of their profile, researchers could discern patterns even in the omissions.
“Therapists could possibly use social media activity to create a more complete clinical picture of a patient,” Elizabeth Martin, doctoral student and study leader at Missouri, said. “The beauty of social media activity as a tool in psychological diagnosis is that it removes some of the problems associated with patients’ self-reporting…By asking patients to share their Facebook activity, we were able to see how they expressed themselves naturally. Even the parts of their Facebook activities that they chose to conceal exposed information about their psychological state.”
Still, others use social media to help remove the stigma of mental illness, bringing a once shadowy diagnosis into the mainstream. The stigma often prevents sufferers from seeking help, consigning them to an isolation that can worsen the condition. But one of the strongest ways to help sufferers is simply being in contact with them, and giving them an open, nonjudgmental space to express themselves.
The New York chapter of National Alliance on Mental Illness created such an online space, launching an initiative over various social media platforms. Those on Facebook, Instagram, Twitter or Vimeo hashtagged “#IWillListen” on posts declaring a willingness to support friends and family with mental illness by letting them know they are open and willing to listen. Over a year, the “I Will Listen” campaign collected over 12,000 pledges of support, according to Scientific American.
The grassroots campaign has also sparked initiatives, such as “days without headphones” on college campuses that encourage students to un-isolate themselves from technology and interact more meaningfully with one another.
Other programs, such as “Coming Out Proud,” help those with mental illness themselves “come out” to their various networks, telling their stories in a meaningful, empathetic way. The program was built upon research showing that those with mental illness who can disclose aspects of their condition feel more self-confidence and self-esteem, which helps them pursue life goals despite their often lifelong struggles.
Technology itself is coming to the rescue as well, with a whole host of apps and software being developed that helps detect and connect sufferers with resources that can help. British-based Samaritans Radar, for example, scans Twitter friends for signs of depression using a specially developed algorithm that roots out common phrases and words found on suicide-oriented websites. If it detects signs of distress, it sends an e-mail to you with advice on how to reach out.
Some criticize the app for being invasive, according to the Guardian, but others recognize it may save lives, particularly when 10 percent of children in the U.K. have a mental health condition.
Similarly, StudentLife, an app developed at Dartmouth College, gathers data from a smartphone’s array of sensors to detect changes in activity that correspond to high levels of stress, depression and anxiety, according to MIT Technology Review.
It collects data on motion, locations, communication, timing, frequency and sleep patterns, among other metrics. Then, algorithms process that raw data into logs of sleep, physical activity and communication. Changes in patterns often corresponded with depression, stress and isolation — a lack of physical activity and motion, for example, may mean social isolation, while declines in face-to-face conversation often indicated depression.
The developers are investigating ways the app can help with interventions — alerting users that they may be sliding into an episode, for example. They are also looking into how caregivers and clinicians treating patients with mental illness can use the app, as well as if it can predict patterns of relapses in those suffering from schizophrenia.
Of course, these apps have to clear significant privacy and ethical challenges to find further medical and clinical use, especially since medical data collection is often regulated by strict guidelines. Still, smartphones offer a powerful ally in helping people become aware of and manage mental health illnesses — provided safeguards can be put up to prevent privacy violations and abuse of data.
Developers and scientists are even hoping to tackle bipolar disorder with apps. According to NPR, a University of Michigan psychiatrist hit upon the idea of an app that can analyze speech patterns. Bipolar patients cycling through a depressed episode tend to speak slower than normal, while patients going through a manic phase speak more rapidly and jump from topic to topic.
The app — tested on a small group of volunteers — records phone conversations of the patient, and sends the recording to a doctor’s computer, where software analyzes the speech, tone and inflections for warning signs. Then, the app can alert doctors to changes in a patient’s mood and help them adjust medications, which might help them stave off full-blown depressive or manic episodes that impair judgment and fluctuate emotions widely.
Bipolar disorder sufferers can take medication to help them live normal lives, but dosages and prescriptions need to be regularly adjusted by doctors. That’s a powerful tool that might have helped Jessica to stay alert to signs of change before the damage is done.
After her manic episode, Jessica stays quiet on social media, despite all of us reaching out to her via messages, calls and e-mails. Finally, word spreads: Jessica is fine, and coming home to Brooklyn.
I send her an e-mail, asking if all is well, offering to be there in case she needs help or simply someone to talk to. I suppose it’s my own version of the “#IWillListen” campaign — or maybe just being the friend I wish I could have been.
Jessica writes back quickly, thanking me. It hasn’t been easy, she says, to “come out” to friends about her diagnosis, much less figure out how to do it over social media in a way that doesn’t jeopardize her livelihood, relationships or self.
She likely suffered from bipolar disorder since adolescence, but was misdiagnosed with major depression as a teen — a sadly common occurrence, often delaying the correct diagnosis by five to ten years. Now, she’s picking up the pieces — getting finances back in order, as well as dealing with the repercussions on her marriage. Doctors put her on medication, and say she’ll likely have to spend the rest of her life on it. She’ll have to stay vigilant for signs of relapses, which are common with bipolar disorder.
“Mental illness is often a lifelong process, something I’ll be dealing with for the rest of my life,” she tells me. “Having the correct diagnosis is like getting the right map finally. I hope it puts me on the path to some semblance of peace and stability.”
But she’s trying to move beyond her mental illness, not letting it affect her enjoyment of life. Ironically, part of that for Jessica is posting on Facebook — putting up pictures of artwork or at a family reunion with her husband, posting links to articles about fashion, art and music like she used to. If you took a quick glance at her profile, you’d think nothing was wrong. But I know I’ll be keeping a close eye on it, now that I know what I’m looking for — and hope to be a better friend for it. ♦