Part 1: Mental health social media made me


By Mark Brown

It’s easy to minimise how transformative the shared spaces of mental health social media are to those who take part, and even easier to minimise how the products of these spaces are changing understandings of mental health from outside of the academy and the professions. 

Social media has created an historically novel situation for mental health by providing three things:

  • Persistent public discussions that can be joined by anyone and consumed by anyone
  • A space distinct from academic, policy or medical discourse where mental health, mental illness and associated topics can be discussed
  • A space where life with mental health difficulty can be lived in the presence of others also living with the effects and experiences that mental ill health and distress brings.

The overwhelming majority of you will be reading this on a computer or phone screen. Some of you will have found it through social media. Some of you because you follow Centre for Mental Health. Some of you because I'm part of your day to day life via twitter. This is novel in itself. Most of you will have never met me. Some of you will have never heard of me. Yet somehow these words have reached you.

Before the web what you could know was limited by who you could know and what you could lay your hands upon. Books and journals were like treasures in a dungeon quest; hidden in the darkness until a brave adventurer could plunder them and carry them as trophies back to the people of the village.  

We think of online discussion between people with mental health difficulties as being eternally new and still talk about it as if it were the future. It’s easy to forget that our modern conception of mental health conversation is inextricably tied to the development of social media as an omnipresent part of many of our lives. The first iPhone only launched in the UK in 2007, around the same time that 3G mobile made it possible to browse the web and exchange richer media via mobile devices. I joined twitter in 2009. While we were looking elsewhere the future was arriving and once it was here we assumed it had been around forever.

Lived experience of mental health difficulty is a category created to to distinguish the lives that people live and the ideas they have as a result, from the professional knowledge held by institutions, practitioners and researchers. While those institutions racked their brains as to ways they stimulate and include ‘lived experience’ in their professional knowledge - creating sweeping and seldom executed plans for engagement and inclusion - people with mental health difficulties were getting on with creating a public discussion without them. Right now, on social media, discussion about the realities of life lived with distress and mental ill health is happening in ways and in volume that seemed impossible a decade ago.

Social media (and by extension the entire online realm) did not feature at all in the first iteration of the multimillion pound mental health anti stigma campaign Time to Change. Instead the focus was on physical stunts, cinema ads and print media coverage. The largest show in town as the planning was taking place to launch Time to Change was the BBC’s Headroom campaign; with TV and radio programming and online resources to read and watch, but few, if any, with which to interact. 

Our growing space for online discussion of mental health, mental illness and distress is a massive change for the overall world of mental health. Not because ‘more people are talking’ and ‘changing attitudes’; but because for the first time ever, people who experience mental health difficulties can find each other regardless of geographical boundaries or the limits that living with ongoing distress and difficulty can place upon someone’s ability to meet others. And it is through meeting others in a realm of ideas and experiences and discussion that the real transformation is occurring. The experience of those who live with mental health difficulties is disruptive and difficult to situate within discourse because it cannot make the choice to respect boundaries, cannot choose to stay in its lane. It spills all over the place; brings the wrong problem to the wrong door; makes what seemed simple appear complicated; refuses to conform to the logic to which the demands of professions and research place upon it. 

Mental health difficulty as lived is not the same as mental health difficulty defined, and is often different from what is researched. And now, for the first time, it’s possible to see in real time how great that disparity is. Social media has provided a new space where people with mental health difficulties can discuss with others in public what they may never have found the space or safety to even discuss with those closest to them in private. Finding spaces where what would have been unsayable is easily understood; people can move from explaining their own experience to a potentially hostile or uncomprehending audience of family and friends, to considering with others who ‘get it’ what that experience means. 

The net result of this communal space of lived experience has been to accelerate discussion of mental health, but more than that, it has made discussion possible that can be taken up by those not present when it was initially occurring. This has made it possible for responses to evolving realities around mental health to travel far beyond the kinds of mental health activism that had existed prior to the coming of social media. This shift to shared spaces of common understanding has resulted in the birth of what might be called a mental health public opinion; where people have begun to differentiate from each other based on their own ideas and approaches to mental health and distress as an issue, not just an experience. A recent paper by Diana Rose, A Hidden Activism and its Changing Contemporary Forms: Mental Health Service Users / Survivors Mobilising in The Journal of Social and Political Psychology captures some of the ways in which the shared discursive space created by social media is making possible ‘hidden activisms’ resulting in part from people coming together via social media. 

Social media has created a persistent environment where themes and experiences can be explored by a range of people who do not know each other. In the same way that mental health blogs in 2004 allowed me an access to debate and thinking and new information and perspectives, social media has made it possible for ideas and discussions to evolve in ways that do not mirror existing academic or institutional structures or thinking. 

Social media is one of the places where people who experience mental health difficulties can break free from the boxes into which they are placed by received wisdom and institutional practice. Breaking free together can be both liberating and frightening, but the two are impossible to separate. Now people are getting together, lived experiences and ideas about mental health are clashing and cross-pollinating. The shoots of new understandings and ideas are rising in ways that suggest new, challenging, futures.


Part 3: What came before mental health social media and what might come next?