Munchausen by Internet: Faking Illness Online

[Birdbomb]

Please take the time to read the entire thread and this link it will answer your questions.

http://en.wikipedia.org/wiki/Munchausen_syndrome

[Dutch mom]

As a moderator? This gives you an expert eye?

So when you spot someone whom you believe is "Munchausen" what do you do?

.......not forgetting what if you have got it wrong?

I dont't see why this shouldn't be discussed here. I've read it being a newbie and didn't feel offended or unsure about it.

Being a moderator doesn't make you an expert but it makes you experience these things do happen more often than you think.

I've had very unpleasant experiences myself with this kind off people on several forums. Some are really 'sick', some just enjoy making things up on the net I suppose.

These made up stories can go very far, they can have a big impact on other forum members (believing them or not) and take away attention from people who really deserve support.

I think it's a good thing to realize this happens, as well for moderators (who are members too) as for other members.

If and what one should do when this happens, depends on the case and is a matter of carefull consideration between moderators.

[TempusFugit]

I personally think this thread is very informative and helpful. I am also certain that the moderators of this forum will discuss any suspected cases sensitively and without prejudice. I have every faith in the admins and moderators of our forum in this respect.

Munchausen sufferers are rarely confirmed by medical professionals as they quite often go under the radar (as explained in Bernards first post). They are also unlikely to admit that they fake illness which is why data on sufferers is limited. Munchausen By Proxy sufferers on the otherhand are easier to diagnose (as pointed out by Kansas Educator).

[brain]

I have been online since the beginning,
which unfortunately makes me a dinosaur
or "ancient". As Internet grew, chat came
along - things were fine, then AOL came
up with AOL IM (I still haven't forgotten my
first IM and it scared the living daylights
out of me! *laughing* And for those who must
know, AOL was Prodigy back then before it
became America Online) - and stuck with
them for years, becoming a Hostess, IT
Tech, Computer Tech, and AOL CAT - all
volunteer ... over the years as AOL versions
grew, chatrooms improved and it worsen;
whereas I must imply so did the people.

What used to be a nice conversation has
become a nightmare, for back in the old
days of "dust" - a Host or Hostess weren't
even needed; people behaved themselves.

Then come in people with all sorts of "Woe
is me" to "Wanting money" to "Perverts".

Things seem to worsen especially when Windows
2000 and XP came along, as one would say in
the "old days" ... to quote

Gone to pot!

In other words, became garbage! People began
to leave, and flaming, bantering, mockery, etc
were prevailing whereas new rules, regulations,
TOS, etc had to be re-enforced; as things were
becoming out of control!

So as a MODERATOR - how can "I" say so? I
have too many years up in my sleeves, and
some of us MOD SQUAD here have also too
many years up in their sleeves as well. We've
seen, heard, been through it all. You can't
deceive us or fool us, some of us MOD SQUAD
(quote) "smell a phony 10 miles away".

As implied, as Birdbomb stated, it is wise
sometimes if you read on the upper right
corner the POST NUMBER --->
If there are a lot of postings, it does help
to start from the beginning before (quotes)
"putting the cart before the horse" or "jumping
the gun" or "being trigger happy".

Remember this: I've posted this and said this
for more than 35+ years: Assumptions and
Presumptions will ALWAYS get you in trouble,
so make sure you have the facts up front before
you say anything. And plus I've also remarked
many times: Think, Think again, and if it is
necessary to post - then post, otherwise, forget
about it. Hope these tips and tricks help!

[Bernard]

Im basing my reply on the fact this is an epilepsy forum.

People are joining for the first time....some teenagers, and they are reading here that "beware of frauds"

If their are people like that here then deep down so what?

The entire point of this thread is to raise awareness that this does occur. It has occurred here at CWE before and will likely happen again. The point isn't to breed mistrust, but to foster a healthy perspective where no member gets too emotionally involved with a story they read on the internet.

As a moderator? This gives you an expert eye?

The moderator title doesn't impart any magical ability, but being part of a moderating team does give you a whole different perspective on the dynamics of forum communities. You learn to look at things differently and will eventually become adept at spotting patterns that were problems in the past.

[kmcc]

I have had several sites of my own over the years.

In all aspects of the internet one has to be careful......... and yes not to get emotionally involved. After all this is the internet.

I just believe particularly with teens here I dont think its wise for some to create distrust intentional or not.

Not only could there be those faking it but also those trying to outdo the other .

All I'm saying is ....is it worth the possible alienation of genuine sufferers because of the odd faker?

[Bernard]

I think you will find, as you read through the forum, that folks here are very open, sharing and supportive. If you see a thread or post where you feel someone is alienating another, by all means use the report post button (), located in the upper right corner of every post, to alert the moderating team and we will address it.

[kmcc]

The entire point of this thread is to raise awareness that this does occur. It has occurred here at CWE before and will likely happen again. The point isn't to breed mistrust, but to foster a healthy perspective where no member gets too emotionally involved with a story they read on the internet.



The moderator title doesn't impart any magical ability, but being part of a moderating team does give you a whole different perspective on the dynamics of forum communities. You learn to look at things differently and will eventually become adept at spotting patterns that were problems in the past.

Bernard, I know where you are coming from but, being a moderator and using your experience isn't a science........

Have you ever thought you could be wrong?

I have known of a few strange cases on the internet of those looking for sympathy etc.

I think it's best just to ignore such people.

Also, if people were looking for sympathy etc. don't you think they would be in a forum where they would be the exception rather than the norm?

After all we are all in the some boat to some degree.

[Bernard]

Bernard, I know where you are coming from but, being a moderator and using your experience isn't a science........

Have you ever thought you could be wrong?

Wrong about what?

[kmcc]

Wrong as in its wise to make people aware of such people.

A moderator might feel they are experienced enough to spot such people but I doubt it.....not 100% anyway.

If there is no emotional attachment then I believe alienating people does more harm.

In the posts here we can already see people taking the "i know more than you " stance aleady.

To be honest I think a thread "Beware, this the internet.....take us with a pinch of salt" would be more apt.

This is the internet......there will always be bluffers and smart arses........ we could warn everyone of all types of scenarios.

The adults here are more intelligent than some give credit to.

[Bernard]

Wrong as in its wise to make people aware of such people.

Based upon the past experience here in this forum, I feel quite confident that awareness is both necessary and good.

The adults here are more intelligent than some give credit to.

I agree.

[joey]

Then come in people with all sorts of "Woe
is me" to "Wanting money" to "Perverts".

it sounds like a small town turning into a big city

[RobinN]

My daughter is a "teen" and I think this information is quite good. I had no idea when I started frequenting the medical forums that this occurred. After becoming a moderator I am aware how it easily can become a problem.

The reason I think this is helpful to my daughter, is that is puts it into perspective when she has people that do not believe her or the fact that she has a seizure disorder. Over the past three years, she has had memory loss. Many thought she was faking it. She has had seizures that some have thought she faked. As she says to me,"Why, when I can get attention on the ice rink, would I even consider getting attention by faking a seizure? That is just dumb." However, it is helpful that she understands that there are some people that do. That makes her sad.

[kmcc]

Im going to call it a day on this thread.......I only wanted to give my opinion on the subject.

If there are fakers then so be it......... sad.

The only faking I have come across is in bed! lol

[joey]

My daughter is a "teen" and I think this information is quite good. I had no idea when I started frequenting the medical forums that this occurred. After becoming a moderator I am aware how it easily can become a problem.

The reason I think this is helpful to my daughter, is that is puts it into perspective when she has people that do not believe her or the fact that she has a seizure disorder. Over the past three years, she has had memory loss. Many thought she was faking it. She has had seizures that some have thought she faked. As she says to me,"Why, when I can get attention on the ice rink, would I even consider getting attention by faking a seizure? That is just dumb." However, it is helpful that she understands that there are some people that do. That makes her sad.

i have never had anybody think i was fakeing but its probably because my seizures are so severe that nobody could fake biting there tounge in half or cracking open thier head

[kmcc]

i have never had anybody think i was fakeing but its probably because my seizures are so severe that nobody could fake biting there tounge in half or cracking open thier head

I wasnt going to add but I couldn't resist.

I know what you mean........ the scars I have I used to tell people I had a labotomy. ( erm thats humour not faking)

I have a small chunk of my tongue missing........I must say I cant remember if it was tasty or not.

[Cinnabar]

joey, you are a riot! Only you, my dear fellow, could come up with something like this! Faking that nothing is wrong.

[darkmarkshark]

There is a person on the EF forum who is definately faking her epilepsy - claims to have been evaluated for brain surgery due to complex partial seizures 3x but has no clue what a postictal state is, and insists that it isn't possible for anyone to have postictal behavior if someone mentions it and explains what it is, Had her SSD approved sometime between 8 pm on a saturday night and 3 am on a sunday morning, (immediatley after her initial SSD denial story was debunked because of its impossibility), routinely berates photosensitive epileptics and says photosensitive people should have their seizure triggers ignored in designing epilepsy sites/forums, unless someone points out how lucky she is because she isn't photosensitive - then she is so photosensitive she can't go outside in daytime, though she works in a garden for several hours a day.

But the main problem with her, is she is constantly lying about wellknown seizures and giving people bad medical advice, using her epilepsy as the reason.If you mention diet, she'll tell you to eat a lot of soy and reduce your fat intake to stop seizures, etc. She seems to get her kicks from telling people to do things she knows will cause seizures, considering she never once gives out accurate knowledge in regards to epilepsy (even someone makin wild guesses would hit on the truth occasionally). She'll keep on posting her lies in the forum until someone posts all kinds of documented proof she can't ignore, then she turns to another thread and continues the lies there

I've my suspicious that she may not be manchausens as much as someone faking in order to engage in hostile attacks on the site, because she becomes the most anti-photosensitive right about a week before the flashing attacks occur. And she is very vocal about how the forum should not do anything to either disable flashing images, or allow users to do so themselves (She's even went so far as to once post that "no one cares about photosensitive people" and "they [photosensitive] people don't matter."

[kmcc]

There's a danger here......... anyone who is lookig towards a forum for advice is one thing. Looking for a way to control your seizures is another.

There are Doctor's and Neurologists for that .........if you need advice there are Epilepsy Associations where you meet people face to face.

As this is the internet.....I think a safety first attitude is best.

Would you take advice off someone calling you on the phone out of the blue?

I would like to control my epilepsy...... not the epilepsy control my life.......I find spending too much time on an internet forum the E is still controlling me.

As for the other woman you claim is "lying"....... don't you think people's ego is dented here? There are pet jealousies and competition........ just like any other internet forums.

People here can have this forum controlling their life.......... I hate to say it I did come here looking for advice but to be honest I think it's just a bit too much.

I'll take a nose from time to time but I want to get on with my life and I do not want E as part of life (except for meds) weekly never mind daily.

As for the woman you claim is lying........don't you think you are following her threads a tad too closely?

[Meetz1064]

someone will report her to the proper people, and something will be done. That's really sad that she's messing with people's minds that way.........