Online discussion forums

Introduction

The Bipolar Foundation recently ran an online questionnaire and from well over 3,000 bipolar respondents, all obviously computer literate and internet friendly (or why would they be on our website and answering an online questionnaire). Through cooperation with a variety of organisations and advocacy groups such as the MDF- the BiPolar Organisation in the UK, McMan’s Bipolar Web in the US, the Mood Disorders association of Canada and others, we had responses form more than 50 countries though the majority were split between the US and the UK. Only  30% reported finding  online forums (online support communities) for bipolar disorder useful and supportive. This raises the question of why? What are sites out there getting right and what are they getting wrong, and what can we learn from this?

A few things need to be considered before we look at a tiny sample of bipolar forums out there. There are always problems on forums – people rarely use their real name, instead an assumed name, which is fine in many cases, and helps people open up, but some people hide behind their fake name to cause problems. Add to this mixture people who may be manic, depressed, or both, i.e. mixed, or psychotic, or dysphoric – i.e. angry and irritable, and tensions can run high. Suicide can be a common subject, as can self-harm, addictions and symptoms – any advice about which must of course be checked with a real doctor, because there are people posing as doctors out there. (There are real doctors too, but they are not there to treat other forum members, they are looking for support and hoping to provide it, just like everyone else). But it can be beneficial to share opinions about meds tried – and their side effects – although all issues with medication must be talked about with a doctor, no changes to medication should be made based on online discussions. The plus side is the fact that many fellow survivors are making contact because they want to provide and share in support and encouragement to others, and good administration/moderation can deal with any trolls or baiters – although even on the best forums I have seen them cause immense problems.

Let me explain the technical terms. Trolls are quite simply people who post controversial and usually irrelevant or off-topic messages in forum, such as an online discussion forum or chat room, with the intention of disrupting the conversation or baiting other users into an emotional response (obviously that is serious on a forum of people who may be ill and extremely sensitive). Baiters are even worse! Like trolls they want attention, the difference is that the response is supposed to be embarrassing to the user in question, and humorous to others. Baiters frequently concentrate on unpopular groups – like those with mental illness. The baiter often seems to be talking nonsense, but that does not matter, because the only aim is to baffle the baitee, and to produce an “interesting” result. Baiting is used in attempts to empty/reduce a forum’s usage. This is done by making forum owners, moderators and long-time users look foolish – such as posting comments to elicit rude responses from prominent members, thus making the responding member or members appear bad to others. As a result, forum users in general may become disgusted and leave the forum.

If you are looking for a forum, Google “bipolar forum,” possibly adding your location if you want to meet up locally, but these days most forums are international – all the ones I cover below are full of people from all nooks and crannies around the world. I can only give you some advice based on my own personal experience on these forums, which is quite extensive, but all the same, subjective.

(UK) The MDF – BiPolar Organisation

http://www.mdf.org.uk

One of my favourite sites; I have been a member for years (under my real name). I was a member before the forums were redesigned by Minervation in 2005, and I have to say, the upgrade was an improvement. The forums on the website are very user friendly, and the users are friendly too. It is an international bunch of people, mainly from the UK, but with contributors from all over the world. What works about the site is the fact that there are many members so there is always something going on. There is a lot of good advice shared between sufferers, and many interesting discussions. I have never witnessed any bullying on the site, and there is a tool whereby any post can be “flamed,” meaning the site moderator will check out its content and suitability – and take whatever action is required. It is also always possible to go back and edit your own posts – for some people this is very important and useful. People come and go, but there are some of us who have been there for years. The site has many sections – and this doesn’t always quite work because it breaks up the flow of conversations. It does work to an extent, it is clear where to go to ask questions about medication, and clear where to go if you want to be controversial, and there are fun forums for creativity – and the general forum is where much discussion takes place. So it works well as a site, though it is a bit compartmentalised, it is welcoming, safe, and supportive.

A comment from a regular user of the MDF/BPO site: “Sometimes I just come on here to browse and see if I can help anyone, on other occasions I have really needed to hear others experience on a particular medication I’m trying and when I’m feeling rubbish or need to ramble/rant/pose a question about bipolar disorder without feeling daft, the forum is here. Sometimes even if no one can help, the fact that someone is there, saying they have been through the same thing is enough. The people on here are lovely, with their kind words, knowledge, caring attitude and MOST of all, their experience.  The support from other members is fantastic, long may it continue.”

The Adventures of Mr Stephen Fry, forum: The Secret Life of the Manic Depressive. (UK based)

http://stephenfry.com for the forums: http://stephenfry.com/forum/index.php

Stephen Fry, who is bipolar himself, has a very popular website (internationally utilised) with a number of discussion forums – all great. Following the production of the two-part documentary, The Secret Life of the Manic Depressive (TSLOTMD), a new forum by the same name was added. This has attracted people with bipolar disorder (and other mental illnesses) where a single forum is used to discuss all factors. I am almost tentative to release the secret that is this wonderful forum – It has many members yet feels so intimate. I have many friends there. People are supportive, more so than on any other forum I have been on. The quality of advice shared is superb. Now this might be down to the inimitable Mr Stephen Fry, all members are fans of his, and as such tend to have a sense of humour and a brain. It is a great site. Yes there are occasionally baiters, who join to cause problems, but the moderators are fantastic, and yes I’m biased because I am a mod there! In Stephen’s own words, “I have no philosophy, religion or lifestyle to espouse. This is a virtual place in which to browse peacefully and without being harangued, harassed, heckled or hectored.” That’s what he has created. It is possible to edit your previous posts. My only word of caution would be that if (like me) you do use your real name, because the site is so popular, you could find your personal stories near the top of a Google search on your name.

A comment from one member, asked to list 3 reasons why she loved the SLOTMD forum wrote: The people here are caring, considerate and always very useful in a crisis. I enjoy the intelligent conversations I have had, particularly regarding literature, and in complete contrast, the very silly conversations too! I have met some really lovely people

Mood Garden  http://moodgarden.org

One site I would recommend is http://moodgarden.org. It is a clear and easy to use site, with many attributes. My personal favourite is the ability to create your own mood diary, ranking your mania through euthymia to depression, which can teach you a lot about your own condition – and maybe warn you if things are getting out of control in either direction.

As for the forum itself there are only good things to say. The site is not exclusively bipolar, but welcomes those with major depression also (it is not “elitist” like some other sites). It is fairly unique (from what I have seen of mood disorder forums) in that it contains very useful sections for people with a dual diagnosis, such as bipolar disorder and alcoholism or even smoking. Personally I would like to see a mood disorder/eating disorder section, but I supposed that is covered by having the dual diagnosis section. There is a section that deals with anxiety that many people will find helpful.

As a member myself, I have only experienced friendly and helpful interactions on this forum, and have not witnessed any bullying of anyone. The advice given (that I have seen) has been of good quality, hopefully helping others. In fact there is a wealth of information available, in easy to use sections, and fellow members always happy to help. Of course it is important to remember that advice given cannot be taken as that of a health professional (psychiatrist or other doctor). From reading posts on the medication section of the forum I was can see that they conversations consist of sharing experiences about certain medications – rather than anybody trying to be prescriptive.

This is a good site – I would recommend it to anyone.

(USA) Depression and Bipolar Support Alliance, “We’ve been there. We can help.”

The DBSA is a great site, they are a top class charity working to help people with different mental health problems, and they get results and my respect – but based on my personal experience, I cannot, in good conscience recommend their forums to bipolar readers. (Note I am only talking about the forums, the website and the work done by the DBSA is superb). There is a lot about the forum that works – a large number of members, forums separated clearly for each problem, the offer of support, a great number of well informed members from all over the world advising each other with up to date information, and in the majority of cases, well meaning, friendly members. However, the forums are not moderated. (Yes there are administrators, but they are few in number and hardly ever seen – even a direct request to them remains unanswered after weeks). So this means that a few members, probably ill and therefore angry and agitated, hiding behind their usernames, bully other members, and the bullying goes on and on, others joining in – or people get the cold shoulder – on another forum that sort of behaviour would have been stopped. One thing that is really frustrating is not being able to go back and delete, or at least edit your own posts. No member of the bipolar forum on the DBSA had a comment.

(USA) BipolarConnect.com

http://www.healthcentral.com/bipolar

A US site (that welcomes international members) that has a discussion forum for bipolar disorder – for survivors, their family, and for professionals. A good, friendly, warm site, easy to use, moderated to keep it safe and friendly for all. And, something not found on many sites, the ability to ask questions of professionals. Replies are not slow; mine took less than a day. And when they say experts/professionals answer the questions, they really mean it. John McManamy is a regular contributor, and he answered my question – and he is also videoed on the site, as is Prof Kay Redfield Jamison, giving advice about various aspects of bipolar disorder, in what appears as heartfelt advice coming from painful personal experience. One downside is the number of adverts that flood the site – but I can forgive that. Another downside or upside, depending on what you want, is that the site is slow. Replies and messages do not flood in. If you want a lot of advice and input, this site may drag too much, but if you are patient and in no rush, it is ideal. It’s what I would describe as a semi-forum. There aren’t running threads, rather they have what they call shareposts that people can comment on. What does tend to happen is that members stay in touch via email, not just on the forum. It is possible to go back and edit your previous posts.

Conclusion

Great sites exist and I hope I’ve steered you towards them, but improvements could be made on all. And these are the good, large sites. There are many many more…

Compiled by Katy-Sara Culling. Edited and Reviewed by Alan Ogilvie.

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