[tecomsin]

One thing I haven't been able to figure out is why do so few people participate in online forums for mental illness. Even though I had a diagnosis of bipolar for almost a decade, it's only just recently I started reading (mostly) and posting (occasionally) online about this issue, although I participated in other online forums about other issues during this time. I didn't see fit to look online for support for what has turned out to be a defining and tragic feature of my life.

They say at least 1% (could be as high as 3% or so) of all people have bipolar so that makes millions of bipolar people who speak english but only a few hundred post here, and including all the other online forums I've run across in English you might get to one or two thousand at most.

I wonder why that is.

Sometimes I find it depressing to read about other people's troubles. On the other hand sometimes I find it helpful to realize that the troubles I've had aren't unique and that helps me see them as less a personal failing than as a sad outcome of a serious mental disorder.

Many people do well with bipolar so they probably wouldn't feel the need but that is only true for some percentage. The rest are probably suffering like many do here, as I do myself.

Sometimes I'm so sad and angry I got this disease, which I personally find isolating. Where are all the millions of my fellow travellers?

Not everyone is comfortable with online forums or being out with their issues. I myself find this site quite comforting. Its nice to feel not alone and accepted.

[Aliceiw]

I think I can think of a few scenarios:

-They don't accept the diagnosis

-They are not on meds and may be manic and off on a path that doesn't include internet contact

-They are depressed and have trouble doing much of anything

-They don't like being online

-They worry people will find out who they are

-They don't know about online support or how helpful it can be

-They think they can do it on their own

-They are using and not in the state of mind

-They are paranoid

Just some ideas off the top of my head. I wish there were more people online, it makes the illness much more bearable when you know you aren't alone in the struggles I agree.

I know that there are a lot of people with bipolar disorder that go to free DBSA and NAMI meetings, at least on occasion. Perhaps those folks prefer the in-person support over online. I also know that there are some very busy Facebook groups. I would never join those, personally, because I want to remain as anonymous as possible. Though I do visit online support groups, I also blog and follow blogs that address mental health issues.

I used to be a group leader for an online bipolar support group on another website. Many people come and go. I think that either they get too busy with daily life (work, children, both), start to dislike support groups, find therapy is enough, get sick and tired of thinking about mental illness, have uncomfortable fights on the group (or are bullied, as sad as that sounds), or are too sick with the illness to be posting online. Some people with bipolar go into denial, or avoid groups because they refuse medications and don't want to defend medication non-compliance.

[tecomsin]

TheSadGirl, I am with you on this one. It's nice to feel not alone.

Alice, those are all great ideas and most have applied to me at one time or another. I finally resigned myself to having a big problem with my brain/mind without any escape. I also wish there were more people. On the other hand if there were millions then the forum would be unusable unless it was broken up into lots of subforums.

BirdDancer, I didn't know you were a group leader. That could be a chore or be rewarding depending on the circumstances. I hadn't thought about facebook but am so glad I hardly use it. At least I haven't embarrassed myself while psychotic on facebook. I feel i can be much more honest on an anonymous forum to discuss private, sometimes embarrassing and personal issues.

[UpDownAround]

I can add another reason that almost happened to me - finding other forums that are pretty dead (little or no traffic) or have just a handful of regulars. This was the 4th or 5th one I tried. I almost gave up thinking it was just something others weren't comfortable with.

[bluemountains]

Most of the time I just read instead of posting or replying to threads. I find comfort or good information in what others have to say. On the needed occasion that I have posted, I have appreciated the great advice or encouragement that this community offers.

Bluemountains

[winter loneliness]

There are a large portion of people with bipolar, who are just out there living life. Working, talking care of family, living.

Stable enough that they don't need online support. Or they just don't feel comfortable.

[Crazy Hitch]

Good point. I only found this site a few years after my diagnosis. It definitely helps.

I agree that many perhaps prefer the face to face contact

these days, their are so many chances to meet face to face- through facebook, or through local meetings, what ever.

maybe it's just forums are going out of fashion
their arn't many forums online related to bipolar disorder (or at least not what I've found), and it could be that the ones that exist either they don't know about, or they have been on them but had bad experiences

or just people feel that they need more than just an online forum for support

and..

not everyone knows how to use the internet

it's true

their might be some people (who are elderly, for example) who have no idea what a forum even is

[USMCBIPOLAR7]

I have always used Facebook but just found this and love it

Many people with bipolar disorder are existing on a meager disability income cannot afford the internet.

[mindwrench]

I read and participated in forums for various hobbies and interests for several years before finally taking the time to read some posts here. Once I started reading, it was earth shattering.

[~Christina]

I found this place... It was a bit different back then.
The lifelong friendships I have made have literally saved my life time and time again.

Many people just are not comfortable posting there life online , Maybe some of them are worried someone they know will find them or something.

I love PC and all the support ? Priceless to me

Originally Posted by tecomsin

BirdDancer, I didn't know you were a group leader. That could be a chore or be rewarding depending on the circumstances. I hadn't thought about facebook but am so glad I hardly use it. At least I haven't embarrassed myself while psychotic on facebook. I feel i can be much more honest on an anonymous forum to discuss private, sometimes embarrassing and personal issues.

Hi tecomsin. It's true what you said. It was both rewarding and a chore. The website I volunteered for had a lot of Terms & Conditions of membership, making it much stricter and limiting in what members could write than this and some other online bipolar support groups. That angered members, especially that websites no suicide talk policy. When the group leaders had to contact members about violations the group leader felt the brunt of the anger. Often members left because of the restrictions at that website.

The bipolar group on that website I mention had between 4-8 group leaders at times. Unfortunately even the group leaders got into fights. Very stressful! But at the same time members often flocked to group leaders for support. When you helped members it was very rewarding. I still go to that website, but am now just a member again. The traffic there has slowed down significantly. This website is more popular, and I like this site better. Oddly, I had signed up at this website even before the other I mention, but forgot about it. You can see that I've been a member here for years, but have relatively few posts because of my absence.

[tecomsin]

I live in canada in a city of over 1 million people. There is one support group for people with bipolar that meets downtown at night two days a week (but not always you are supposed to call ahead and see if they are meeting) and I'm not up to that commute and parking issues. I've looked all over and that is what I have found. On the other hand there are over 250 AA groups that meet each week within the city limits at all days and times all over the city. I'm envious of you folks in the US as there does seem to be more peer support opportunities by and large for people with mental illness. I've looked through meetup and through facebook and haven't found anything except the one group. Maybe the difference is that there is this idea of the recovering alcoholic and recovered alcoholic, who can be a peer mentor whereas this concept does not exist for bipolar. If there were in person groups nearby during daylight hours I would go but there is nothing at all, so for me the online forum is the only peer support available.

[Rose76]

I tend to see most of my troubles as being the result of my personal failings. That doesn't really bother me, in that I think to be human is to have a bunch of personal failings.

I might be bipolar. One doctor told me I was. I really don't care. All I know is I get severe mood swings. For me to be told that the reason for that is because I have a mood swinging disorder doesn't really tell me anything. I don't think I will somehow be exhonerated by having a serious mental disorder. I am who I am, and I am how I am. My behavior is pretty much who I am. If, at times, my behavior is bad, or I fail at something, then that's that. I don't see the point of thinking how, if I didn't have this disease come down and strike me, oh, the person I could have been. I don't expect anyone to give me credit for who I could have been, if only I were wired differently. I suppose I could have been a movie star, if only I had a different face and some great talent for drama. I suppose I could have made great contributions to technology, if I were gifted at science and math. I suppose I would have been a great philanthropist, if I had inherited a large fortune.

So, yeah, if people only knew what a staggeringly fabulous person I would have been, if only . . . . . If I let my imagination loose, I could get really astonished at myself. Actually, that might just make me feel worse for being as I am.

Originally Posted by ~Christina

I found this place... It was a bit different back then.
The lifelong friendships I have made have literally saved my life time and time again.

Many people just are not comfortable posting there life online , Maybe some of them are worried someone they know will find them or something.

I love PC and all the support ? Priceless to me

possibly,

then again I have seen websites where they say during reggestration (or even in the forum, don't use your name/ contact details)

that's the beauty of usernames too.

people can pick any username they want, then it's up to them isn't it

people know my name and the fact I am from england, but nothing like my address or anything

and emily is a popular name.. the chances of finding me...

anyway- I made that mistake before on another forum.

gave my email address to someone who I trusted to be friends with and they called the police on me

[winter loneliness]

Originally Posted by shattered sanity

anyway- I made that mistake before on another forum.

gave my email address to someone who I trusted to be friends with and they called the police on me

Wow. Why? Were you feeling violent or suicidal?

Originally Posted by winter loneliness

Wow. Why? Were you feeling violent or suicidal?

not really any of those things.

I did mention suicide to her, but not in the context of doing it- the context of doing it in the past

[tecomsin]

Originally Posted by shattered sanity

anyway- I made that mistake before on another forum.

gave my email address to someone who I trusted to be friends with and they called the police on me

Wow, that is scary. I didn't know the police can locate you just from an email. Did they also have the city you lived in? The reason I ask is that I want to protect myself. There can always be the malicious person as well...

Originally Posted by tecomsin

Wow, that is scary. I didn't know the police can locate you just from an email. Did they also have the city you lived in? The reason I ask is that I want to protect myself. There can always be the malicious person as well...

yep.
they just used a special thing they have at the station to trace the email's IP address, and from that they can get city, house number, etc

I'm not trying to scare you. I didn't know they could do this either until it happened

[~Christina]

Originally Posted by shattered sanity

anyway- I made that mistake before on another forum.

gave my email address to someone who I trusted to be friends with and they called the police on me

How were you tracked by your email address to actually find you????