In 1994, Dr Phillip Long founded www.mentalhealth.com aiming to create a cross-cultural encyclopaedia of mental health conditions. The site is looking a little archaic now, using older DSM categories not commonly used now, and containing diagnostic ideas that didn’t really catch on, such as analysing all mental health symptoms through Greek personality dimensions.
While the site may not be entirely relevant these days, it’s a fascinating and detailed read. Moreover, it’s attached forum has been consistently running since 2005. In internet terms, this is an incredibly long time. Imagining friendships possibly extending for 10 years, its easy to see the best part of forums; their ability to connect people with others across time and space, providing friendships built on common experience and support.
Looking at the forums I’ve frequented for research before, the overall tone of conversations, boards, and members can take two main directions. Many health forums – some of the largest being PsychCentral, PsychForums, and CrazyBoards – are centered on the American healthcare and diagnostic system. Forum jargon can reflect this, assuming everyone has the trifecta of a t-doc (therapist), p-doc (psychiatrist), and rx (psychotropic prescription). In medically-centred forums, issues are instantly interpreted through the lens of diagnosable mental health symptoms and DSM criteria.
For some, this is beneficial, a major source of validation and a reassurance that they aren’t making things up or looking for attention. Personally, it can be disconcerting to see issues regarded as temporary annoyances on a general forum be regarded as permanent medical symptoms- what if this approach made people feel helpless, like they couldn’t change the issue at all?
Others can be led by people who have had bad experiences dealing with mental health professionals. These can be antagonistic to the medical system, presuming many staff are uncaring or incompetent. For people with negative experiences or ill-treatment from medical staff, forums can be a safe haven. However, that ethos could discourage new visitors from seeking medical help when it is urgently needed.
Because they’ve been around for longer than most other forms of online communication, more research is available on forum users. However, there are still problems in getting good-quality, rigorous research; one attempted meta-analysis on whether forums made people more likely to seek medical help found that many of the available studies weren’t designed well enough to provide useful results.
Powell, McCarthy and Eyesenbach gave a pop-up survey to depression forum visitors, which asked about their depression symptoms, history, and perceptions of the forum community. Half of all visitors met the DSM criteria for Major Depressive Disorder, and half of those had not received any medical help or therapy in the last year. This means many of the people currently with diagnosable MDD were unknown to medical services. 15% had not told anyone else personally, relying solely upon the forum. People considered their forums to be a good source of information, and an encouragement to seek help; 36% said the internet was an important step to them seeking professional help, and 37% used information from the internet when talking to medical staff.
Bauer et al analysed posts on two bipolar disorder forums. While people used forums mostly for illness-related conversation, they also posted to share and request information on financial and legal difficulties , and for social advice. They concluded that the main reason people use forums is to share information about symptoms and daily struggles with an audience who understand.
The studies done so far show a vaguely positive influence – forums may not do much that can show up on tests, but they anecdotally help a lot of people. However, just as with other social media, there can be a more negative type of forum as well.
Separate from their medical/anti-medical axis, forums also differ in their attitude to recovery. (Although this axis almost entirely applies to forums about mental health issues, rather than general health).
Pro-recovery forums focus on supporting members who specifically wish to recover from and reduce symptoms of their diagnoses. As such, these forums tend to be the most positive and encouraging to members.
Other forums are recovery-neutral, making space for people at any stage of their issues or recovery. This can be done by having separate forum sections for people in recovery and people who do not yet desire to recover. These forums aim for a middle-ground between strict and open. For example, they may allow people to discuss self-injury but disallow people from suggesting self-injury materials or techniques to others.
Also, similarly to on Tumblr, there are anti-recovery forums; those which consider mental health issues (most commonly eating disorders, but also depression, suicidal ideation and self-harm) as a way of life rather than an illness, and those which build a community of secrecy and dysfunction.
Anti-recovery forums are far less likely than other types to be researched, so knowledge of exactly what kind of community they produce, and their potential negative effects, will be hard to come by. It may be that people simply visit them as catharsis, to expel negative feelings in a safe space. They may create a non-judgemental community, where people can express very dark or serious symptoms without being pressured into one specific treatment. However, people have also argued that they create a competition culture; that people may feel like they are “not as sick” as others, and are therefore less deserving of support.
Ultimately, the direction a forum takes, and the type of support it provides, is decided by the founder and the moderators they choose. Forums can last for years, creating a space where posters’ words are taken into account alongside years of context and history, showing the story of their lives rather than moments of crisis and peace. Also, the depths of bonds formed in forums reach further than those in public social media, where content, not character, is king. Because of this, forums probably have the greatest potential, both positively and negatively, of any social medium.