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Well, I was just thinking that the schizophrenia and schizoaffective boards on this forum are among the quietest. We seem to have an awful lot of Bipolar people, depressives, PTSD folk etc but its relatively quiet on the schizophrenic/psychotic front. Most schizophrenic forums on the internet are not used by patients themselves but rather by their families. Is this because less people have schizophrenia than say Bipolar? Or is schizophrenia a more disabling illness than other flavours of MI and renders it sufferers unable or unwilling to communicate in places like the internet as well? Or is it just chance that more people with MI other than schizophrenia have stumbled across the boards? Im just curious as to your views on this one...

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I think it's got a lot to do with how the disorder affects you. from what i can tell, actively schizophrenic people are fairly low functioning, and probably don't have the luxury of the internet. a lot of them probably don't even have homes. and a lot more are probably  on the ward, and no one seems to have noted internet access as a feature at the local puzzle factory. perhaps a lot of people with psychotic symptoms don't want to talk about them, for fear of ridicule/rejection/the "lovely" feel of being on antipsychotics.

this is based on well, nothing, so take it with a grain of salt ;)

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Well, I was just thinking that the schizophrenia and schizoaffective boards on this forum are among the quietest. We seem to have an awful lot of Bipolar people, depressives, PTSD folk etc but its relatively quiet on the schizophrenic/psychotic front. Most schizophrenic forums on the internet are not used by patients themselves but rather by their families. Is this because less people have schizophrenia than say Bipolar? Or is schizophrenia a more disabling illness than other flavours of MI and renders it sufferers unable or unwilling to communicate in places like the internet as well? Or is it just chance that more people with MI other than schizophrenia have stumbled across the boards? Im just curious as to your views on this one...

I'd say all the above.

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I'm sort of trying to get away from posting on message boards - think it might be bad for me psychologically somehow, something about not being able to express myself properly and thinking about message board members like they are regular inhabitants of my real life 24/7. Playlouder.com is my main message board and I get myself laughed at all the time and then I obsess over it. I think perhaps being of a schizoid persuasion changes your approach to these things. While unmedicated I was addicted to yahoo chat and used to freak random people out something chronic all the time. Wish I knew about this site and had been of the inclination to use it - it might have helped back then.

Ona different note I'm going for lunch today with a heavily medicated, fully hallucinating, paranoiac, benefits-case mate from way back when I was in hospital (he's one of the friendliest guys you could hope to meet despite his troubles). I'm going to quiz him about hallucinations after reading about people who get them here. And as usuall we'll shoot the breeze about paranoia and weird people we knew in hospital. Looking forward to it.

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I've pondered the question a fair bit.

My conclusion is that sz must have a steep disability curve that isolates them rapidly as the illness worsens.  Chatting and posting online require a lot of effort constructing relationships and context, which I would think becomes difficult, as evidenced by how often tiffs blow up over misinterpretations by those who aren't psychotic.

Still, we have had few if any problems with sz members. Its us bp'ers who rile things up.  ;)

Best,

A.M.

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My guess/opinion from watching the schizophrenia and schizoaffective boards for a while now.

- communication difficulties

- paranoia,  I think many, if not most, members occasionally get a little paranoid about a particular post or personal info but living with Paranoia day to day is much scarier

- greater stigma attched to schizophrenia than any other MI

- schizoaffective is probably the most difficult Dx to make even by the best of pdocs = low traffic

- Catch 22, fewer schizophrenics post so new members or lurkers may think there isn't much support here for them, so they don't post and the cycle goes on

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I've pondered the question a fair bit.

My conclusion is that sz must have a steep disability curve that isolates them rapidly as the illness worsens.  Chatting and posting online require a lot of effort constructing relationships and context, which I would think becomes difficult, as evidenced by how often tiffs blow up over misinterpretations by those who aren't psychotic.

Still, we have had few if any problems with sz members. Its us bp'ers who rile things up.  :)

Best,

A.M.

<{POST_SNAPBACK}>

I don't know about that steep disability curve, A.M. WIth early dx and treatment of milder symptoms there are  lot of people with sz functioning pretty well  (better than me  ;) ).  But I have observed a bunch of boards for people with sz (and also visited and posted as a self-identified family member, on those allowing this).

What really stands out, is that nobody writes much.  Even on the active boards (and they are few), posts tend to be short and directed at sharing news (started a new med, got a puppy, death in the family). Almost no introspection.  Simple language.  Often they report, "I don't have anything to say" or " I didn't know what to say."

I think this is simply and sadly a result of the commonplace side effect of disease and/ or meds, that sufferers experience a lack of spontaneity in general and specifically verbal poverty of expression.  The intensely inward nature of the experience is another reason for low socialization even online (one reason isolation is so commonplace and a symptom to be fought,  as it is self-perpetuating) .

The only exceptions I have seen are the few who go on quite a bit and are often really fascinating characters with  a lot of folksy wisdom. They are most often ones  who have gone off their meds.  Sometimes I have seen a disheartening progression as I read over months of a person's posts at once, and see this progression:

Pt. resolves to go off meds, after  relating how they've changed for the worse since beginning them.  Pt gets very lively and colorful, imaginative and animated. Lucid.  Many quotable quotes.  Then bit by bit, they ramble  increasingly making less and less sense...

Then comes a long silence.  Followed in weeks or months by the word that the indivudual was put back on meds. 

Maybe sometime I will post excerpts I have collected from people describing their excruciating feelings of painful flatness -  the feeling of having lost themselves from the meds. Some are very eloquent and all are heartbreaking to me. What a hellacious disease it is, goddamit it! 

PS It's also important in speaking and writing to keep it short and simple (I'm very bad at this!) or the train of thought is easily lost.  The result for the person with sz  can be frustration ,embarrasment - and end of dialogue. 

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Hey, now here's a really neat character with sz.  Utterly unique. Lives in the brush wildeness in So CA near the beach.  He reports in one post that he goes to listen to the dolphins for hours sometimes and that afterwards his "Voices" are all dolphins for days!

He has two websites but this is the main one. Calls himself Wilderness Charlie.  Charlie has very much an "us and them " attitude towards  those with and without sz which he regards as both blessing and curse.  He takes no meds.

http://chas96099.tripod.com/

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i think it may also have something to do with the fact that schizophrenia is a thought disorder whereas most of the rest are mood disorders. for the people ut there that are schizophrenic, have any of you seen that video where they try to give people a sense of "what it is like to be schizophrenic"? it portrays a man going to the pharmacy to pick up medication and he has auditory/visual hallucinations, and i was curious as to how accurate you thought it was (if you have seen it.)

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This probably has a foot in each door of being on topic or off but has anyone heard from Halation?...or what did she change to?...four of two?

Isn't she our only sz mod? And she seems to have vanished.

Not that she ever spoke to me much anyway, but i always liked her: we have a similar dx and strikingly similar delusions (only hers involve a lot of space time continuum, but for me space time comes from Einstein and Einsteins concidered such a big authority my paranoia would never let me buy into it-but similar:just different)

Oh and on that note if your delusions do tend towaards the infinite never read anything by John Wheeler it's just too powerful and too magic!...sorry I was only going to go a bit off topic.

My point was where's Halation? I haven't even seeen her on the epliepsy board.

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Don't know the answer to your question. I always liked her too. 

I DID notice some time ago from her profile (yes,  changed moniker to "four of two"), that she specifically said she might just disappear from time to time. 

i am still around. i disappear frequently, however, for the sake of my own mental health and so i don't go off cackling maniacally, obliterating posts in a misguided effort to save you all from The Terrible Secret Of Space, only to come down later and have to explain to y'all that the tiles on my bathroom floor promised me it would work. (this happens more than you'd guess.)

Seems she actually was here tho silently, just a few days ago.

Wherever you are halation four of two and  (....?), you've been missed.

(Not much  to moderate anyhow, is there,  Dan?  You wannta volunteer as temp?  BTW what is YOUR opinion on the thread topic?  You're just the one  to ask. Pretty please? Enough of us who aren't in that place, speculating).

Many greetings and be well - to four of two and Dan too,

rt

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I often wonder why schizooaffective gets it's own board, every couple of weeks we'll get a BPer wondering if they're sczA because their a bit paranoid and other than that it hardly gets used.

Dan

Very astute observation! LMAO!

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I'm diagnosed as paranoid sz, and yeah, the paranoia makes the internet a scary place to be.  I've noticed the sz board is kind of slow too, I only check it about once a week.

Paranoia is a bit of a bummer when it comes to sz like illnesses and the internet. For a while I was too scared to post anything in case some of my care givers were checking up on me. And even more out of the ball park, in case what I wrote would trigger a nuclear war (long convoluted tale there...).

Rationality tells me people have better things to do than read my nonsensical ramblings but the paranoia nags me still  ;)   And this is all due to my schizotypal disorder (schizophrenia's milder little brother). I can't begin to imagine the paranoia proper schizophrenia entails.... :)

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  • 3 years later...
Guest chas96099

Hey, now here's a really neat character with sz.  Utterly unique. Lives in the brush wildeness in So CA near the beach.  He reports in one post that he goes to listen to the dolphins for hours sometimes and that afterwards his "Voices" are all dolphins for days!

He has two websites but this is the main one. Calls himself Wilderness Charlie.  Charlie has very much an "us and them " attitude towards  those with and without sz which he regards as both blessing and curse.  He takes no meds.

http://chas96099.tripod.com/

What a pleasant surprise, I was siting cross lagged under my favorite Canary Palm Tree eating date that the raccoons would drop occasionally on my head when I started thinking its been a while sints I've poster any thing on the interment. So I dusted of may trusty lap and headed for the nearest Star-Bucks in my neck of the woods 5 or so miles away in order to search my old user name. Guss what, I found this post someone made that linked to my wed site and my site is still up. Now if I can leave this message I will be the lat to post here and the first in the last four years. wish me luck if I hurry back I'll get to a deserted beach just in time for the grunion run.

WHC

http://chas96099.tripod.com"]My link

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My dx is schizoaffective. I post in this forum when psychotic symptoms are troubling me, but I also post on other forums here. I go to a depression/bipolar support group IRL. I don't believe there are any groups for sz in my area (I know there is one that just started for any mi).

I don't know why it's quiet. Sometimes I get paranoid and the internet scares me so that could be one reason. I think the reasons you listed are all true.

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For what it's worth, the OCD board here is pretty quiet, too. Today is one of the first days in perhaps weeks I've noticed anyone posting there.

I suppose I could post there more (I have OCD) but I usually only do it if my symptoms are bothering me, or if I really see someone else struggling and am afraid nobody may answer them.

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