Jump to content

take a look at how the schizophrenia section is run and how hospitible it actaully is to schizophrenics


Recommended Posts

how many of us have you allowed moderators or other members to run off, VE? you realise that melissa has been run off.

nowhere else on these boards are people allowed to come in and post about someone they knew with ___, but that happens all of the time on here.

people have been openly hostile to me when i've been struggling and took it upon themselves to message me (on someone's behalf) that i'm triggering. i've never purposely triggered anyone, i've only talked about myself. and people go into that section to gawk and to dispense NON first hand experience advice. if that happened on other sections it would be dealt with.

i want to be here so badly, because i have friends here and i want to have a place here. and i tried only doing blogs and not participating in the section *I* am diagnosed with after cerebrus' exchange with me.

 

a lot of people have been run off here. do you not  want us here, VE?

 

if so, just say so. or just remove the section. the symptom plus schizophrenia section.

 

i mean, obviously don't because there must be people who rely upon it. it just sucks that we're treated, or have been historically treated,in chat and in threads and in private messages, differently than what is afforded others on here. what happened to there's no hierarchy? if that's true, then why it is it the section that is treated like a free for all? why don't people have to have experience to post there? why is this thread closed so i coulnd't even put it where i'd like:

i enjoyed a lot of people on here, including times i've chatted with you.

please consider how this site is unfriendly to many schizophrenics. i could put link after link of threads here that've been closed or times it's been permitted for people to ignore the rules so long as NONE of schizophrenics even consider doing that.

i know i'm not alone, but i speak only for myself. this place isn't as welcoming as people act like it is...and certainly not managed with uniformly, for all of the different flavours of MI

which is why, i'm having a horrible time with voices and i had to have my husband hide the pliers because of my teeth and....i feel like, if i say what's going on someone will say i'm a terrible mother or that it's all my fault (a.k.a. get more meds; have you taken all of your meds)...it's fucking NOT the case that all things are treatment responsive. and that whole pushing just take more, do more, figure it out, go talk to your doctor...ignores the fact taht this is a chronic fucking condition.

 

this place doesn't offer support to all when it's needed most. just to some. and it's bullshit. you can do better.

  • Like 2
Link to comment
Share on other sites

Hi @mellifluous .

@Wooster asked in your blog for any improvements you would like to see. I have some thoughts.

 

the idea of a sz, or sz and related disorders board has been turned down before because there s a psychosis board, the only board devoted to symptomology, or that there are not enough of us to dedicate a board, too.

the problem with the psychosis board is anyne feels welcome to add their opinion, even if they have no experience, or people come out of curiousity. This is not allowed elsewhere on cb.

i do not know who would moderate. There have been a couple of attempts with sza moderators and we have problems staying stable. 

The boards are soooo quiet now. I do not know if that will be another reason to say "no" again.

it may be a misperception, but it sure seems like if you have sz and are symptomatic you get banned quickly. Melli has a better idea of names than I do

people with no experience with these types of disorders often give advce that is not helpful, just frustrating. 

TL:dr

i would like a board dedicated to sz and sza (or something similar). You could rename the psychosis board, even.

i would like the board to be moderated so that people with no clue or gawkers are dealt with.

i would like there to be some tolerance of psychotic or other sz symptoms

 

  • Like 3
Link to comment
Share on other sites

Thanks for writing all this out @confused!

It's helpful to have some specifics to take to the mod team. I can't guarantee any specific changes, but please know I will do my best to elevate your voices of lived experience.

  • Like 1
Link to comment
Share on other sites

Chiming in- I've never actually been diagnosed SZ or SZA, but I've been diagnosed with and continually experience psychosis. I've always liked that I felt I could go to that board with my psychosis-related issues, post in the spectrum check-in, etc. 

  • Like 1
Link to comment
Share on other sites

1 hour ago, heilmania said:

Chiming in- I've never actually been diagnosed SZ or SZA, but I've been diagnosed with and continually experience psychosis. I've always liked that I felt I could go to that board with my psychosis-related issues, post in the spectrum check-in, etc. 

really?!

all i can say to that is Q.E.D.

Link to comment
Share on other sites

i don't that i offered the amount of clarity and impression i've had reading the contributions of confused and wooster and heilmania. each very different.

 

confused: thank you for putting into succinct words what would be hoped for

wooster: thank you for listening

heilmania: you just proved my point: the sz/sza section is treated differently than other sections and we are not even represented on active staff. all other sections have someone with the diagnosis, not just one or two symptoms. someone who meets the criteria for diagnosis, in charge of the sections they moderate. and you're not supposed to go into sections and post about diagnoses you don't have. but you freely make my point: the section is not for sz/sza people in the same ways other diagnostic sections are for their contributors. it's peer based there. it's enforced if you don't have diagnosis or aren't seeking diagnosis. i've been heckled. VE knows this. people take liberties with giving what's actually shitty advice as numerous sz/sza people have remarked. the general idea of "explaining why someone is delusional" is a flawed one. losing insight is real and ...so many other things.

 

the bottom line is that there should be uniformity. why don't you give someone with sz/sza a chance to oversee the section so not as many people who come through there are run off or banned but DO have the diagnosis?

 

you could help us build a section hospitable to those of us with sz/sza by recognizing us as a standalone diagnosis, the same way almost all other sections are....and letting us have self representation on how the section is moderated. because i think we should have the same latitude to keep our section to those of us diagnosed/seeking diagnosis of sz/sza. i know those of us with those diagnoses have often been online at not the best times or had episodes play out on here. i'll admit that i have, certainly. but give us some credit and stop subjecting people with sz/sza to different opportunities.

 

i think the three requests @confused outlined are a good starting point. respectfully, but firmly, -melli x

Link to comment
Share on other sites

7 hours ago, mellifluous said:

i don't that i offered the amount of clarity and impression i've had reading the contributions of confused and wooster and heilmania. each very different.

 

confused: thank you for putting into succinct words what would be hoped for

wooster: thank you for listening

heilmania: you just proved my point: the sz/sza section is treated differently than other sections and we are not even represented on active staff. all other sections have someone with the diagnosis, not just one or two symptoms. someone who meets the criteria for diagnosis, in charge of the sections they moderate. and you're not supposed to go into sections and post about diagnoses you don't have. but you freely make my point: the section is not for sz/sza people in the same ways other diagnostic sections are for their contributors. it's peer based there. it's enforced if you don't have diagnosis or aren't seeking diagnosis. i've been heckled. VE knows this. people take liberties with giving what's actually shitty advice as numerous sz/sza people have remarked. the general idea of "explaining why someone is delusional" is a flawed one. losing insight is real and ...so many other things.

 

the bottom line is that there should be uniformity. why don't you give someone with sz/sza a chance to oversee the section so not as many people who come through there are run off or banned but DO have the diagnosis?

 

you could help us build a section hospitable to those of us with sz/sza by recognizing us as a standalone diagnosis, the same way almost all other sections are....and letting us have self representation on how the section is moderated. because i think we should have the same latitude to keep our section to those of us diagnosed/seeking diagnosis of sz/sza. i know those of us with those diagnoses have often been online at not the best times or had episodes play out on here. i'll admit that i have, certainly. but give us some credit and stop subjecting people with sz/sza to different opportunities.

 

i think the three requests @confused outlined are a good starting point. respectfully, but firmly, -melli x

It is treated differently. I agree. I'm dealing with an awful lot of symptoms right now, but I think that's what I was trying to say, that I agreed with you. I do generally try to provide support, and it's rare that I tell someone they should go IP. I'll sometimes mention it as a possibility so it stays in the person's mind as an option, but usually only when they're not seeing any options at all or really, really seem unsafe. 

People shouldn't be giving advice when they don't know what they're talking about. Period. I wouldn't go to the addiction area and try to tell people to stop being addicts, mostly because that's not helpful, but also because I don't have any life experience with addiction! I would not have anything helpful to say, so I stay away. I also stay away from PTSD, ED (although I've dealt with that in the past), OCD, and some others. Next time someone oversteps their bounds in the Psychosis board and gives dumbass advice without any SZ/SZA background, please call the person out, tag me so I see it, and I'll shut them down, because it needs to stop.

I think if we do have a SZ or SZA-only board, we should keep a psychosis section, just split things, instead of doing away with a general Psychosis board- There is no other board I can go to and say, "gee whiz, the voices are loud today," and get any worthwhile responses, because people without psychosis do not, can not possibly, really understand what that's like. I once asked my husband what he'd do if he started hearing voices, and he said he'd shoot himself. My husband. Who lives with me. Who has seen me IP, who has been there for me through everything. He still doesn't understand what it's like, not really. I don't know why/how my pdoc diagnosed me with Psychosis without diagnosing me as SZ/SZA. I think part of it was that he didn't want me to deal with the stigma of a SZ/SZA diagnosis. Part of it is that he swears up and down that my psychosis comes from my anxiety, which doesn't make much sense, as I do hear voices on my "good" anxiety days. I don't get it- they pop up out of nowhere, and they're put down by Abilify. But anyway, enough about me.

I think giving someone with a straight-up SZ or SZA diagnosis oversight of the board would be very helpful- any recommendations as to who that person could be? I'm not sure who else on the mod team covers psychosis, but in covering that board, I do what I can with what I know. That's the best and only thing I can do. If you and/or others feel my presence on the board is unhelpful or detrimental, please tell me. If I sound like an asshole, tell me. If I'm in that category of people talking out of their ass, I'd like to know, because I'm trying to be helpful, not a dick. I'll gladly throw the reins to someone with an actual SZ/SZA diagnosis and post my shit elsewhere.

Link to comment
Share on other sites

@heilmania you bring up good points.

 

some thoughts:

i don't know of anyone to recommend to mod, if I think of someone I will let you know

i don't see sense in having 2 different boards and splitting us up. Maybe we can broaden the sz spectrum definition. But, psychosis and positive symptoms are not the whole of my dx. Or maybe psychosis as a subsection?

i have had no issues with you. I don't think you have been detrimental in any way. 

 

 

Link to comment
Share on other sites

Thanks, @confused, definitely let me know who you recommend if you think of someone. An idea may jump into your mind as you hang out around CB. 

I could see it being a subsection. So people with SZ/SZA can post there as well as people who only experience that symptom? 

And I'm glad I haven't rubbed you the wrong way. I feel that everyone here should experience relatable peer support, so I want to be sure I'm not jumping into conversations to speak when I should be listening. I am grateful to have had the space on CB to openly freak out and deal with suddenly hearing voices when they started up out of the blue just over 2 years ago. Thankfully, I'd already been a member a while, so I knew I had everyone here to turn to. 

Edited by heilmania
Forgot to tag confused
Link to comment
Share on other sites

1 hour ago, mellifluous said:

i'm not going to post any names here because i couldn't suggest someone without getting his/her consent first.

Of course. That makes sense. I wouldn't want the spotlight suddenly on me, either.

I do want to be clear- I have no interest in driving people away, either, just maintaining a safe and friendly environment. I also don't want to put you in a position in which you are not comfortable or feel pressured to represent everyone on the SZ/A spectrum. That's not fair to you, and it's also not a sustainable way for us to keep moderators around. 

Thank you for not "throwing someone else under the bus." I'm not into that, either. Wherever the blame lies, it lies, and we have to acknowledge it, then look past it to effectively move forward and take deliberate steps to ensure people on the SZ/A spectrum feel just as welcome here as someone with, say, an anxiety disorder.

I appreciate that you opened the lines of communication about this rather than letting it fester and being driven away. 

P.S. For the record, I'm a fan of yours. ;)  You give good advice and never sound like a dick when you do.

  • Like 1
Link to comment
Share on other sites

On 8/23/2017 at 10:26 AM, heilmania said:

I also don't want to put you in a position in which you are not comfortable or feel pressured to represent everyone on the SZ/A spectrum.

and i thank you for that.

i just miss my friend melissa a lot.

and i miss feeling safe enough over there to talk about what's happening with me and what i'm going through.

Edited by mellifluous
Link to comment
Share on other sites

 I am going to "out myself"here as a person who has (accidentally) posted on the schizophrenia (and probably other)boards. I admit that I didn't know it wasn't okay for me to reply to posts on other boards. I *did* read the rules but I obviously didn't completely comprehend them. I am sorry if I stepped out of line.  I really just wanted to be supportive. 

Link to comment
Share on other sites

Selection of Moderators on Crazyboards is done by the site owner on his own initiative and at his sole discretion. Should the site owner determine that additional moderation is needed in any area of the boards, if a suitable candidate is available that person will be recruited and assigned. There is no means by which a member can volunteer. The Moderating Team does not publicly discuss candidates for Moderator at any time, therefore any public discussion of potential new Moderators would be mere speculation.

Link to comment
Share on other sites

3 hours ago, amskray said:

 I am going to "out myself"here as a person who has (accidentally) posted on the schizophrenia (and probably other)boards. I admit that I didn't know it wasn't okay for me to reply to posts on other boards. I *did* read the rules but I obviously didn't completely comprehend them. I am sorry if I stepped out of line.  I really just wanted to be supportive. 

amskray -

The User Rules make no mention of any requirement to post only on certain boards. We are, as we have always been, a non-uptight community that does not walk on eggshells. We simply request that members sensibly refrain from posting in topics they know nothing whatever about. Mellifluous has been expressing a personal preference to only hear from members with the same diagnosis, but this is not, at this time, our policy.

Link to comment
Share on other sites

@Cerberusoh really?

 

this isn't a first person only site? why is there a sticky in at least the PD section saying if you don't have PD don't post here?

 

furthermore, i'm not the only one posting on here and i'm also not the only one who would like to have members who do not have first person experience with sz/a, not posting about things they are not diagnosed with. and it's not just that, but that people who aren't diagnosed with any psychotic disorder find it perfectly fine to come and offer up their opinion despite that opinion potentially being super unhelpful and driving people away who are here for support.

 

@amskray thank you for your efforts to be supportive.

Edited by mellifluous
  • Like 1
Link to comment
Share on other sites

Mellifluous:

Attempting to "quote the rules" at me is silly. I helped write most of them, both the letter and the spirit.

The "Just a reminder" you quote is a three-year-old thread (in which you made your views clear also) and there has been much discussion in the intervening time amongst the Moderating Team refining our sense and understanding of what constitutes appropriate posting. You will not find that 'reminder' in the User Rules; it is a guideline.

When you joined Crazyboards you agreed to abide by the User Rules. I encourage you to go back and re-read it in its entirety to better understand not only its details but the overall premise upon which CB was created, which was to be inclusive, tolerant and welcoming. The Moderating Team is working to understand your concerns and determine what, if any, measures can be taken to assist, but there are a number of factors to consider, including how we uphold the character and mission of the site - which is non-negotiable. Until we determine what can and cannot be done, we expect all members of our boards to continue to treat every other member with courtesy. Hostility is unacceptable. All conflicts between members should be referred to the Moderators.

"First-person" means that our posts are about ourselves. We may not all have experience with a specific dx, but we all have first-person experience with mental illness, and many of us have had our dx changed from one to another more than once. Many forms of MI are similar, and some are related. Research is suggesting that autism, for instance, may share common root causes with schizophrenia. Somewhere, in the realm of MI, we all have a common denominator, a point at which our shared experience can potentially be of aid to each other. And this is not the PD board, which, in our experience, requires additional rules. In the dozen or so years in which we've run CB, we have not so far found those additional rules necessary here.

 

 

Link to comment
Share on other sites

if hostility is unacceptable then why are you being hostile toward me by saying i'm doing "silly" things? that's dismissive and condescending, which certainly isn't very nice.

and i did just re read the rules and what i'm saying, and what i said in the start of this thread, is that CB is, in practice, NOT as welcoming to certain diagnoses. and i asked VE directly what could be done about it because not being welcoming to certain diagnoses seems to be a problem and i'm not the only person posting in the sz section to see it.

and, with respect to first person being posts about ourselves...*exactly* which is why i don't think people who come onto threads and post NOT about themselves but give their opinions on others when they don't share a diagnosis should be reported. which is what i did.

i don't want to argue with you, but you're demanding i be respectful when you're not being very respectful to me or valuing the fact that i'm not the only person posting on this thread who sees an issue.

are you trying to make me feel unwelcome? it feels that way. if you're not, then please apply the same respect you request and avoid being condescending by calling what i say "silly".

Edited by mellifluous
  • Like 2
Link to comment
Share on other sites

I know changing the section name would not keep people who relate with similar experiences from posting, but maybe it could make people more aware of where/who they are posting to. I would not go on the autism board and start spouting nonsense. But, people do on the psychosis board all of the time.

For example: If you know what a delusion is- a fixed belief in something consensus reality does not believe, you would know calling someone delusional to be "helpful" is just frustrating. Who is that advice really for?

I think mellifluous and i have some differing opinions, I am just offering my thoughts.

I think the key issues are:  tolerating schizophrenic symptoms so people aren't driven away or banned

                                           moderating the board in a way that people with sz feel safe posting

I think a sz and related disorders board, with a psychosis section if people want, would be a good idea

 

 

 

  • Like 1
Link to comment
Share on other sites

@confused, the bit of what you mentioned about rearranging/renaming boards is up to VE, so I can't say whether or not that will happen. 

I will take what you said about making the board feel safer into account when using my mod superpowers. Like I said, I'm glad this issue has been brought up. 

  • Like 2
Link to comment
Share on other sites

16 minutes ago, confused said:

tolerating schizophrenic symptoms so people aren't driven away or banned

moderating the board in a way that people with sz feel safe posting

i agree that those are the main issues.

and the example you gave of someone coming in and calling a symptomatic person delusional...is an excellent and certainly a timely one.

  • Like 1
Link to comment
Share on other sites

28 minutes ago, heilmania said:

@confused, the bit of what you mentioned about rearranging/renaming boards is up to VE, so I can't say whether or not that will happen. 

I will take what you said about making the board feel safer into account when using my mod superpowers. Like I said, I'm glad this issue has been brought up. 

Thank you

  • Like 1
Link to comment
Share on other sites

In the rules: The word of the moderators is final.

You have no say in who posts where and policing and bullying members because they have the wrong diagnosis.

You attack people for things you don't agree with, that you don't like, and so on. 

  • Like 1
Link to comment
Share on other sites

54 minutes ago, San said:

In the rules: The word of the moderators is final.

You have no say in who posts where and policing and bullying members because they have the wrong diagnosis.

You attack people for things you don't agree with, that you don't like, and so on. 

are you suggesting we should attack people when we disagree? that's... i don't think we should have to attack people and i don't think staff should be bullying members.

  • Like 1
Link to comment
Share on other sites

On 8/24/2017 at 9:31 AM, mellifluous said:

are you suggesting we should attack people when we disagree? that's... i don't think we should have to attack people and i don't think staff should be bullying members.

Don't be disingenuous. Re-read San's post. He isn't suggesting anything of the sort, but rather suggesting that you stop doing the attacking. I suggest that you stop claiming that the staff bully members because you do not agree with our moderation. That sort of thing gets members sanctioned. Just saying.

Link to comment
Share on other sites

 Share

×
×
  • Create New...