Q: Internet Chat Rooms & Bipolar Support
I'm still fairly new at this (both being diagnosed as bi-polar and this group),
but I have a rather interesting comment to run by you.
I mentioned to my psychiatrist that I had joined this group for support and to
obtain some first hand knowledge and here is his rather interesting response.
"Be very careful with these chat room things, the people in them are usually the
most non-functional of the bi-polar spectrum and their stories could scare
anyone. You'll just become more depressed and scared than you already are if you
spend too much time there."
Let me make it clear right now that I don't agree with him, but I am curious
where and why he got this impression. Doesn't this site represent all forms of
bi-polar? Have you ever run into this type of
Dear Ms. H' --
Well, that was rather blunt of him, wasn't it? We could just dismiss the
remark. He obviously hasn't spent a lot of time surfing around internet chat
groups. I've spent some, not as much as I would like: I always learn something
when I do. However, I'd say his comment is dismiss-able, based on my
On the other hand, are you familiar with "The 1%
rule"? This rule says that when someone gives you feedback, it might be 80%
right, or 50% right, or it might be just flat wrong (0% right). But the rule
says "Could there be 1% in there that is true?" What can you make of that 1%?
What gains can be had paying attention to it?"
Applying the 1% rule to this comment: is there any
truth in here that we might do well to consider? Let's take his comment one
piece at a time.
1. Be very careful with these chat room things.
Well, sure. Likewise, you should be very careful with these doctors (including
me), because we all have our biases, some recognized, some not, and lots of
pressures on what we say and how we say it. So too will participants in an
internet support group or chat room. So, a message of caution? Sure, that's
worth keeping in mind. In my view, the only way to escape built-in biases is to
look for good science; there is a tremendous amount of built-in bias there as
well, but in the best of circumstances, the investigators take pains to protect
their results and conclusions from presuppositions.
2. The people in them are usually the most
non-functional of the bipolar spectrum. Now of course we should apply #1
here: there's what he said, and there's what you heard, and there's what you now
remember and write. We should all presume that these are not necessarily
the same, just as a good scientist trying to protect against presuppositions
would do. But surely he said something along these lines. Maybe it wasn't quite
so blunt, or maybe it was. Either way, is there anything in here to learn
First, he is making a remarkable generalization and
probably has little or no data to go on. But in his defense, I'll bet what he
was trying to say was something like this: Ms. H', I think you might have a
bipolar variation that is not as severe as it sometimes can be. If you go online
you may hear stories from those with more severe versions than you have, and I
wouldn't want you to think that their experience is what you're going to face
now or in the future. That's probably what he meant in the next phrase,
their stories could scare anyone. In some cases he is right. What he doesn't
know is what percentage of the time he's right, which in my experience turns out
to be far less than he thinks.
In any case, "most non-functional" is offensive, even
if we give him a break and try to assume he did not mean to label anyone as
such. One can imagine softer ways of putting that. And yet, the evidence shows
that he is utterly wrong in any case, in his assuming that internet support
groups are populated by people who have been most functionally impaired by their
symptoms. This website, Bipolar World, is a testimony to how very functional
some people can be even when they have very severe bipolar symptoms at times.
It's been a privilege to be associated with such obviously "functional" people!
There are other similarly amazing websites out there, run by people with severe
symptoms at times. So here we could offer your doctor some gentle redirection,
perhaps by coming in with some examples of very "functional" people helping
3. You'll just become more depressed and scared than
you already are if you spend too much time there. Again it's tempting to
dismiss this one, as you probably have already found it, in your personal
experience, to be flat wrong. But one can see what he's worried about here:
hearing stories of bad experiences and thinking they might represent your future
in some way.
Have I seen/heard this attitude before? Oh, yes, most
definitely. Where does it come from? Probably from your doctor hearing things
like this: "oh, lithium? oh, no, I've read on the internet about what happens
to people who take that, and I don't want that to happen to me..." (One can
substitute any medication name in there for lithium, as well: no matter which
medication one considers, there are bad stories out there about it.) So now
your doctor has to work even harder than usual: lithium might be clearly the
best alternative for this patient, but she is leaning away from taking it before
he even gets a chance to describe it and why it might be useful for her, or why
she is not so likely to have the side effect she read about, etc.
So, in some ways his attitude is understandable, even
if he's wrong on a couple of counts and was pretty blunt.
Published March, 2006