She sat before me, feet in combat boots tapping an irregular rhythm on our muted yellow clinic floor. She was twirling a strand of long black hair and chewing some gum as she ticked off her symptoms in a bored voice with just a hint of well-hidden angst. There were the heartache symptoms such as sadness, hopelessness and loss of interest in activities that used to be fun. There were brain symptoms such as trouble concentrating, which could affect homework and get in the way of daily activities. ‘It’s hard to make it to your job at the coffee shop on time when you are constantly losing your keys,’ she explained with an exasperated tone. Third, there were physical symptoms such as changes in appetite, difficulty sleeping or sleeping too much, and a feeling like you are moving slowly.

I’m a physician at the Social Media and Adolescent Health Research Team (SMAHRT) at Seattle Children’s Hospital, where depression is a frequent diagnosis. Yet the diagnosis isn’t always simple, because symptoms are so variable and patients and doctors can get confused. Often, patients are sent for evaluation for something else, such as sleeping or eating problems, or the possibility of a grave physical illness of unknown cause. After a diagnosis of depression, the adolescents typically nod their heads in understanding, formerly tense shoulders now visibly relaxing. They are glad there is a name for what they feel, glad to know it’s not just them, and that there are treatment options.

Parents can baulk at the news. Sitting ramrod straight in their uncomfortable clinic chairs, eyes boring into mine and voice quivering, they demand additional tests or CT scans. ‘It can’t be depression,’ they argue. ‘We need to keep looking for something more serious.’ The parents sometimes resist therapy as a treatment. ‘I don’t want him lying on some couch complaining about his childhood to a stranger.’ Some parents argue that they ‘don’t believe’ in antidepressant medications. Does this reaction reflect a generation gap? Overbearing parenting? An expectation that state-of-the art radiologic imaging can find the cause of the symptoms?

I often think that parents’ reactions to a diagnosis of depression could be rooted in stigma. That is, the stigma of depression. As defined by Dictionary.com, stigma is ‘a mental or physical mark that is characteristic of a defect or disease’. Other definitions include words such as ‘disgrace’ and ‘reproach’ or ‘stain’. In decades past, depression was commonly referred to as a ‘stigmatising’ illness. Once you were diagnosed with it, you were thoroughly embarrassed. You worried what others would think. You didn’t tell anyone. You took your meds in secret. You told your friends you were going to the gym when you went to therapy.

The stigma of depression was likely rooted in perceptions of mental illness going back hundreds of years. Even doctors were prey to these. In medical school, I observed a doctor-patient interaction in which the physician advised: ‘You just need to go to visit a third-world country, then you’ll see something to be depressed about and you’ll feel better about your life here.’ In another situation a physician told me he had advised a patient to ‘just tell yourself you don’t have depression and see if that helps’. The stigma of depression undoubtedly contributed to its most severe consequence – suicide. Some patients avoided treatment because of the fear of being ‘found out’, and untreated depression then worsened and led to suicide. Some families learned that a loved one had depression only after suicide had already taken place.

In the past decade, a subtle shift in stigma has taken place largely online, in such shared spaces as Facebook, Twitter and YouTube, where users become both creators and consumers of media. Adolescents and young adults are among the most avid social-media users, with rates of Facebook use above 80 per cent in most of the studies done by the Pew Internet and American Life Project, the definitive source for information on social-media use trends.

My own introduction to depression on social media came through research we did three years ago. I was working with my team on a study of how college students share things about drinking on Facebook. Was it ‘a glass of wine on a girls’ night out’, for instance, or ‘shot shot shot’? One day, a team member mentioned that she was noticing references to depression symptoms on a college student’s Facebook profile.

‘I’m guessing that person is probably just having a bad day,’ I suggested.

At a meeting, another team member asked: ‘What do you think we should do about recording all of the displayed depression symptoms we’re seeing?’ I reflected on this briefly, all too briefly, and launched into a discussion about how depression was a stigmatising illness. All my medical school professors had said so, and we were unlikely to find evidence of it on a global, public website.

Finally, shortly after this, another team member asked me to look at her screen. ‘Aren’t these depression symptoms? I checked the diagnostic guideline book and I really think these are consistent with depression.’ She was right.

Of our 200 profiles, about 25 per cent had one or more references to depression

We immediately launched a new study to evaluate displayed depression symptoms on Facebook, using the definitive guide, the Diagnostic and Statistical Manual of Mental Disorders, or DSM, to define depression symptoms. We decided to start by examining 200 college student Facebook profiles and evaluate one year of content. I predicted we’d find no more than five per cent of profiles had any references to depression.

As is often the case with research, I was wrong (that’s the fun of research, right?). Of our 200 profiles, about 25 per cent had one or more references to depression. In some cases, college students posted one depression reference and no others. In other cases, a pattern of waxing and waning symptoms over the past year emerged. These references gave us rich and insightful glimpses into depression symptoms, such as ‘Feeling sad and tired, can’t get out of bed for class’ and ‘Can’t do anything right, want to give up, I’m totally a hopeless case.’ Because of the nature of social media, we also observed how the social circles around these college students responded to the disclosures. Often, friends provided support: ‘Hang in there!’ Other comments offered to provide in-person support: ‘I’m coming over and I’m bringing the Xbox.’

If a quarter of college students reference depression symptoms, then where is the stigma? Where is the shame in a public disclosure of depression that so many past generations endured in silence? It appears that social media has provided a new venue in which disclosures of depression symptoms are allowed, welcomed even, and responded to with social support in both public and private ways. Since that initial study, we’ve done follow-ups, which consistently found depression symptoms displayed on around a quarter to a third of Facebook profiles of young adults. We evaluated depression symptom displays on Twitter and, in a one-week period, found more than 200,000 Tweets that included the terms ‘depression’ and ‘depressed’. On Instagram we found self-harm communities sharing photos of cutting and disordered eating, and offering each other support.

As stigma has fallen away, the culture of suicide has changed. No longer are suicide notes left in sealed envelopes, only to be found after life is lost. Now stories and news reports describe how suicide notes get posted on social media beforehand, or often just as the suicidal act is attempted. This is a dramatic shift in how suicide notes are being used. No longer is the suicidal person leaving an explanation – instead, we were seeing more white flags with the potential for last-minute rescue.

On the positive side, posting suicidal intentions in advance opens up the possibility of preventing death. But identifying these social-media displays as potential suicide notes is not always easy to do. Many suicidal ‘announcements’ on social media are recognised as such only after the fact. A phrase such as ‘Can’t take it, gotta leave’ was later understood to mean much more than a bad day at work. ‘Elvis has left the building’ was later found to mean something much more than a reference to a favourite singer. Other suicidal posts were more direct, but the user then deactivated their profile after the post. This type of post often left an audience of worried viewers, some of whom were Facebook friends but not friends in the real world. These Facebook-only friends often had few options to reach the person and little understanding of what had happened.

There have been positive outcomes and last-minute rescues after a suicide note posted online. I heard one story about a neighbour who was Facebook friends with the surly teen across the street. When the teen posted ‘just took some pills gunna die now’ on Facebook mid-morning on a Wednesday, the neighbour wasn’t sure what to do. She knew the teen’s friends and family were probably at school or work and might not see the post, so she took a risk that it might be a joke and called 911. It wasn’t a joke, and the teen survived because of her call.

There has also been some negative fallout. The very medium that banished stigma presents new opportunities for cruelty in the form of cyberbullying. Now, bullying takes place away from the small world of the school campus and on the large global stage of Facebook. Teens often view this bullying as published, permanently recorded, publicly available and unstoppable – and sometimes worth killing themselves over. The news media is rife with reports of teens who have risked suicide after a history of such bullying which left them feeling there was no way out. In the week of Christmas 2014, I was sad to read the story of a young person in North Carolina who had been cyberbullied; she posted a goodbye on Facebook before taking her own life, asking: ‘If I die tonight, would anyone cry?’

young people found the possibility of a nurse screening Facebook profiles for patterns of depression especially ‘creepy’

For the past five years, my research team and I have contemplated a future where depression and suicide are changed by social media. With open disclosure of depression symptoms on social media, one could identify those at risk early and offer resources or treatment, all based on a pattern of Facebook posts. We came up with two main ideas. First, we thought that since young people have an average of 500 Facebook friends, surely one of them could make the connection and offer help if depression was displayed? But more research revealed that these were largely social-media friends and not real-world friends. If people didn’t interact with each other much beyond passively watching an acquaintance’s status updates once in a while, they were unlikely to take the effort to actually reach out and ask if everything was OK.

A second idea was to hire someone like a nurse to screen Facebook profiles for patterns of depression – but young people found the possibility especially ‘creepy’. We’re still not settled on the rules of online privacy, so having any trained observers identify depression displays appeared to be unacceptable – even with stigma at a low ebb.

Yet other studies explored an automated text-detection system to identify suicidal language and alert a suicide hotline to those at risk. While these approaches have the advantage of reaching far and providing responses day or night, they also have their limits. Most text-detection systems are built on recognising key words, such as ‘suicide’ or ‘kill myself’, and it is unlikely that automated text-detection systems will recognise cases if the post has a spelling error such as ‘suiside’, or if the person chooses to use artful language. ‘Elvis has left the building’ is unlikely to get caught in an automated suicide-detection filter because the statement doesn’t use any keywords.

The more research we conducted, the more complex it got. Then, a solution appeared. After presenting a summary of our research at a national conference, I was approached by a woman from the audience. She was the aunt of a teen, and she’d noticed his Facebook posts about depression. In the end, she went to talk to him about it. He didn’t want his dad to know, so she helped him find a counsellor herself.

Wow, I thought. Here was someone within the young person’s network who was already taking on the role of watching profiles and reaching out when a pattern of depression displays was present. I labelled this woman a ‘cool aunt’. Over the coming years, I have met at least a dozen of these cool aunts and a few cool uncles as well. They are trusted and caring adults, willing to become a young person’s Facebook friend and ask that most important of questions: ‘Are you OK?’

The culture of suicide and depression has gone through a radical change. Stigma has been lowered and might be virtually non-existent in the world online – something that just 20 years ago seemed impossible. The next step is changing the culture of connection in the social media world. Can we reach those people now posting their pain online and broadcasting their intent to take their life? Perhaps then the new culture of suicide can actually end the deaths.