Author Topic: New Forum for newly infected? (Read 13955 times)

Peter Staley · « **on:** July 18, 2006, 02:45:58 PM »

We've received many requests from forums members to consider opening a new forum for the newly diagnosed. We're open to the idea, but want to hear from everyone first. Please keep this discussion civil, and vote in the poll (it will be open for a week).

The poll will NOT decide things -- the forums' moderators will make the final decision, based on all the reasoned arguments put forward in this thread.

Thanks,

Peter

jkinatl2 · « **Reply #1 on:** July 18, 2006, 02:56:46 PM »

I think it's a terrific idea. Hopefully it won't be exclusionary, and input from people who have had HIV for a while would be welcome. Conversely, I would hope that newly infected people would still feel welcome in the other forums as well.

But it's a horn I have been blowing for years now at aidsmeds

. No, not THAT horn.

Lisa · « **Reply #2 on:** July 18, 2006, 02:59:29 PM »

Dear Peter,
while I applaud your willing ear, I would submit that any further dissection of the existing forums would be a dangerously slippery slope.
Such a forum would be an invitiaion to the frightened WW's of the site to utilize such a forum to justify their irrational belief of implied positive status, rather than going through the factual steps necessary.
I am of the belief that such a forum would be exponentially difficult to moderate, beyond what is currently in place for our limited moderators to peruse.
The newly diagnosed members are addressed with gentleness, and forethought.
For these reasons, I oppose a new forum of this type.

Teresa · « **Reply #3 on:** July 18, 2006, 03:07:04 PM »

As someone whos fairly new to HIV/Aids I have learned so much from the living with forum and the other forums as well.

But i wonder how many would go to the newly infected forum to start with and then move over to the living with forum.

Teresa

DingoBoi · « **Reply #4 on:** July 18, 2006, 03:16:49 PM »

i vote no.

I too see it as divisive in that if they start out in that forum, the are less likely to become integrated into the mainstream living with forum. Effectively it will separate the oldies and the newbies with a big large wall between them.

I also don't think people in a specific forum like that will receive as much support as they currently receive in the living with forum... the reason being is that everybody reads the living with forum.. but how many people actually read the OTHER forums (besides off topic). I can tell you I rarely look at nutrition or some of the others and I would be disinclined to look at a newbie forum. I suspect many others would not as well and therein lies the problem. People who won't go to that forum won't reply to provide support that they would have giving normally in the living with forum.

Example: When a newbie posts in living with... they get 20+ responses of welcome... actually making them feel damn welcome here. In a separate forum.. I see those welcomes dwindling to a trickle and fear the perception of this site will not be as welcoming.

David_NC · « **Reply #5 on:** July 18, 2006, 03:27:17 PM »

Hi Peter,

Like Lisa, I think it's great that you're willing to consider adding a new forum. At one time, I would have thought it was a good idea. Now, I'm not so sure. I joined back in March. In my initial 'Introduction' post, many who I (affectionately) call "Old Timers" welcomed me. Tim (Moffie), Andy, Mark (aztecan), Ann, Dan (Oscar), Alan(bama), Rocky (RAB), Coen (bobik), and others are all well seasoned in this HIV/AIDS thing. I'm not sure that they would visit a 'newbies' forum much, and I think that I would have missed out on their replies if I'd posted in another forum. My initial post was one of the hardest I've ever posted, and I post to a lot of forums (only one dealing with HIV though). All the welcoming and supportive replies that I received meant a lot to me. I'd hate to think that by posting in a different forum I would have missed those. I think that the current forums pretty much divide things up well. I think I would suggest that those newly infected indicate something like "New to HIV" or something similar. Keep up the good work.

David

jkinatl2 · « **Reply #6 on:** July 18, 2006, 03:28:28 PM »

Lisa and Bailey both have valid points. However, I would like to hear some newly infected people's points of view.

And Dingo, you are spot on about venturing into that forum. I personally would be rather unlikely to do so - which would help my blood pressure sometimes, maybe.... but would do little to help educate newly infected people regarding the issues that only long-term survivors have had to face. This includes developing a skeptical nature regarding doctor-patient paradigms, the necessity for activism, the reality of the pandemic and it's relation from the macro to the micro.

But that all having been said, it WOULD be great to be able to discuss the reality of my 13-year disease without being worried that I am a downer, or that I am freaking out a newly infected person.

J.R.E. · « **Reply #7 on:** July 18, 2006, 03:38:25 PM »

Hello Peter,

I also believe that this new forum would NOT be a good idea. I can see the, "am I infected" worry wells going over to the "newly infected" and asking, symptom questions. Just what they need !!

Since I have been here, the newly infected, I believe have received the guidance and support that they need from the "living with forum".

Just my thoughts-----Ray

newt · « **Reply #8 on:** July 18, 2006, 03:44:48 PM »

I voted no. I have a question about whether people would "graduate" and how and when, and if ever, and whether those not newly diagnosed get discounted as not part of the new boys n girls' frame and vice versa. Would newly diagnosed just be the class of this year who hang together? so what next, (next year?).

I value the diversity on one Living With forum. I imagine newly diagnosed people often read before joining and gain strength from seeing the mix of people new to the virus, and how they are supported, including support each other, and how other people long in the tooth with HIV survive and thrive. That was my lurking experience pre-joining. This is not to say the start to the journey isn't a special moment (that don;t sound quite right, but y'know what I's getting at) but separatism on this occasion, I am unconvinced.

Also, a newly diagnosed forum to my mind would call for someone (or three) to fend off the wrong-headed trying-it-on people who are not yet diagnosed but want something more than they get in the Am I Infected? forum (a minority, but there nonetheless), and perhaps someone to say the "right" things that people are supposed to need to hear, therefore it becomes a task not an exchange.

However, a Spanish-language forum, that would open up a whole new frontier.

As would one that came with a free tequila shot for each post

- matt

Now playing: Alicia Keys, Wild Horses

Matty the Damned · « **Reply #9 on:** July 18, 2006, 03:46:54 PM »

Like Matt I vote no. For the same reasons. It gives me the irrits that I agree with the Dingo on this, but hell it's just the outcome not the substantive matter.

MtD

David_NC · « **Reply #10 on:** July 18, 2006, 03:47:17 PM »

Quote from: jkinatl2 on July 18, 2006, 03:28:28 PM

Lisa and Bailey both have valid points. However, I would like to hear some newly infected people's points of view.

And Dingo, you are spot on about venturing into that forum. I personally would be rather unlikely to do so - which would help my blood pressure sometimes, maybe.... but would do little to help educate newly infected people regarding the issues that only long-term survivors have had to face. This includes developing a skeptical nature regarding doctor-patient paradigms, the necessity for activism, the reality of the pandemic and it's relation from the macro to the micro.

But that all having been said, it WOULD be great to be able to discuss the reality of my 13-year disease without being worried that I am a downer, or that I am freaking out a newly infected person.

Jonathan,
Maybe newly diagnosed is a better term than newly infected. My view is from a fairly newly diagnosed person. I think you, and all the other Old Timers, are what brought a sense of reality to HIV for me. I'm afraid a 'Newly Diagnosed' forum would have freaked me out more; I have a feeling that it would be a bit like the "Am I Infected" with all the WW's. I've never liked that forum and it really bothers me to read those posts.

David

angelofdreams · « **Reply #11 on:** July 18, 2006, 03:52:01 PM »

while only joined recently i have found to be welcomed and helped in a tremendous way.
all on this forum have been fantastic.
i do see the reason behind having a room for newly infected people,
i only found out last month but would not know as much as i do now if i have been in a forum with people who are all rather new at this,
i am glad i was in the forum where most people have been for a longer time.

thanks for that guys, you have all made iot much easyer in the last few days

xxxxx
angel

Lwood · « **Reply #12 on:** July 18, 2006, 04:29:49 PM »

Ya, its just tough Titty if youre newly infected aint it??
Isnt it thhe newly infected that need this place the MOST. in my case it was .
theres not much there for new members, other than a plunge into a boiling hottub of political flaming and Pityflaming, ..... ya thats just what you want to experience after getting the HIV bomb.
not some chatrooom politics....
Given the recent change in the atmosphere around here , I think its pretty apropriate, .
WHAts the complaint

That it will be a gateway for WW fakers and Hypo's OK , valid point the line will have to be drawn..
What is the argument

that its not worth the time // ( ILL Volunteer ) or that its just some fucked up rite of passage that anyone newly diagnosed has to go through a 24 48 72 hour crazy ass lockdown to earn their bones ?? I for one would be there for the newly diagnosed , online, on the phone, in person...
It Just Is OK ??

nvgreene · « **Reply #13 on:** July 18, 2006, 04:49:08 PM »

Though I am new to this forum, I hope that my thoughts are helpful.

I tested poz just over a year ago, I found that it was helpful to find people that were going through the same emotions etc that I was. I found that reading stories or postings written by newly infected was a great help.

I feel that a forum for the newly infected is a great idea, IF AND ONLY IF, the community as a whole still uses that board, posting, making the new people feel welcome, offer ideas, comments, suggestions, information and the like.

Not having that when I found out was a bit overwhelming, i tried to find out too much in a short time and got lost, instead of just dealing with the fact and then learning. I feel that we that have been through it may be able to offer insight, that doctors/social workers cannot.

Just my take on it

Terry · « **Reply #14 on:** July 18, 2006, 04:50:16 PM »

Peter,

I think it’s a great idea. However I’d title it “OMG I finally Tested Positive”

With what’s been going on here I’d even suggest a separate straight and gay section and why stop there we could have black women section and white women section. Upper class section. Red state Blue state sections. Maybe even add a “I’m a top looking for a bottom section.” ROFLMAO!

Seriously, I’ve witnessed so much diversity here, over the years another change won’t mean a dam. No matter how you try to separate the group your still going to have the whiners, jokesters, emotionally unstable and those that feel all high and mighty about their newly found home/family.

A good example of too much mix in the pot is the thread that Andy and I assume that all moderators felt necessary to lock because it “Got out of subject”

I took/read that thread very serious. I enjoyed the information and the exchange of opinions. (After all I came here years ago to learn something about living with this crap.) Ann had some very excellent points, personal to herself. Matty had some just as equal counter points in a rebuttal. Some of the members were sharing what they perceived to be important to them and then we had the usual childish comments from a few for attention. I even felt that the originator of that thread was kind of a troll, none the less, too many opinionated people of different backgrounds under one heading, so it was closed.

I want to add that that thread proved to me that prejudice (In all its ugly form.) is well and alive on the Internet as well as here at AIDSmeds.

It seems to me that some people on here only want to hear nice news as far as their diagnosis goes. Some want to make light of even being Newly infected with the HIV virus. Some newly diagnosed, that have yet to become ill don’t want to hear what’s ahead in their future (Those that are in Denial) I’ve noticed even those that said that they have stayed away because of all the serious conversations going on and they just didn’t want to hear it. This tells me you need a separate forum for those new to this scene.

Whatever works for the collective group is what I would like to see happen here. While you’re at it you could start a thread that’s titled “JUST THE COLD HARD FACT’S MAN!” No candy coated bull crap, just what does all this mean for me and what should I expect for a future?

Terry (who would handle that Horn if Jonathan passes it up.) You know who I mean? I’m going to hell for sure!

Jeff64 · « **Reply #15 on:** July 18, 2006, 04:57:19 PM »

I really don't see the need...seems better just to jump right in here once you find out you've got it.

Jeff

RAB · « **Reply #16 on:** July 18, 2006, 05:05:50 PM »

Peter:

Thank you for giving all of us the opportunity to express our opinions on this possibility.

I strongly support the idea of a new forum for the "Newly Diagnosed". I do so for the following 3 reasons:

(Note: I am expressing my feelings in #1, I am not making judgement,voicing criticism, or trying to minimize the feelings of anyone else.)

1. I have been living with HIV nearly half of my life. The reality of my life is far removed from someone who is newly diagnosed. Yet there have been times, MANY times frankly, where I have felt like the Living With forum has no place for me anymore. Outside of the obligatory Happy Birthday/Anniversary that is. The volume of traffic and threads gets to be overwhelming. It is difficult to swim through all of those threads just to find some topic that I can relate to on a personal level. (The thread title doesn't always give a clue either.) I respect and understand the emotional struggles someone who is newly diagnosed is going through, and when I feel so inclined I can offer that to the best of my ability. But I come here for my own needs too.

2. The concerns already expressed so thoughtfully by other members about the downsides are all very valid and deserve important consideration. Issues like WW's moving in, newly diagnosed not integrating into the Living With forum etc. However, I would suggest that if a change is made and these issues develop and can not be dealt with, well then we can always switch back. But speculating doesn't necessarily mean it is going to happen. We won't know how it works out unless we try.

3. Speaking of speculation (insert embarrassed grin) I'd submit it's possible that the Newly Diagnosed Forum might actually produce a situation where those posting will get a greater level of attention. With their questions getting mixed into the hopper of everything that goes on in the Living With forum, it's possible that some are getting overlooked, lost track of, whatever.

Again I thank you for allowing us to express our thoughts on this.

RAB

Lisa · « **Reply #17 on:** July 18, 2006, 05:47:56 PM »

Excellent, and eloquently stated points Rab.
Not that I am swayed necessarily, but you have articulated another viewpoint quite well.

DCGuy511 · « **Reply #18 on:** July 18, 2006, 06:25:12 PM »

I cheated a little and read through the thread before I voted. I ended up voting no for a few reasons.

I think that "experienced" HIVers would avoid the new forum and just stay in the Living section. I think that the interaction between the two is important.

When I first joined one of the first things I noticed was that here was a group of poz folks that are living. The welcome I received was very moving. Made me think, "Hmmm, maybe I'll be OK."

What is the definition of newly diagnosed? Do you have to move over to Living at some point?

Who answers the questions of the newly diagnosed? Other newly diagnosed?

Those are my 2 cents.

Steve

Robert · « **Reply #19 on:** July 18, 2006, 06:36:05 PM »

I vote yes.

There has been such a deluge of new members lately that I just can't keep up anymore. When I joined, James (Opalcat) was one of the first to reply personally to me because he too had just been diagnosed, hospitalized with PCP and starting meds. Both of us were going through the same turmoil and anguish and everything was whirling around so fast that neither of us had no idea what was going on. We identifed with each other. We saved eac other.

It is so important to relate with someone who is also sharing your own personal hell. With so many new people joining now, you're likely to lose touch with that person. With a seperate forum perhaps it will be easier for the "newbies" to find someone.

And it's not like the "veterans" can't go there. If there is someone or something we can identify with and can contribute, well what would stop us? ANGELOFDREAMS is one of those newbies and he brought up a subject that other newbies wouldn't know anything about: Bengal kittens. I immediately referred him to our own in-house expert, Nancy.

Vote Yes on Proposition New Forum

Lwood · « **Reply #20 on:** July 18, 2006, 06:56:33 PM »

The whole 'Just jump Right in "" aproach just doesnt cut it for alot of folks especially given some of the poisonous shit that has, been going down in the forums ... the Moderators keep mentioning, " what would a new member think after reading a thread like this " and I have to echo this.... How many newly diagnosed have wound up here at their wits end only to be turned off when the first impression of AIDSmeds is some pissing contest about things that were better left around the bong, than in the support room for people with a Chronic, Life Changing, stigmatic, Politically Incorrect, Underfunded, and well just generally kinda SHITTY disease....
DISEASE folks, not social club. or have I missed something ??
Once again, my vote is YES for an official welcoming forum, for those who have conclusively tested positive, ( ya that will be a bit of a problem) and are in the weird limbo that goes along with it.
Sadly, gone are the days of unlimited welcomes and open arms ( well, not if I have anything to say about it )
and I dont see anything wrong with an official, Unofficial Hug .
Ya, the potential for abuse is there, and may well be the overwhelming argument against the idea. I personally know of at least TWO members ( and yes we all know who you are ) that have hit on people new to this site like this was some HIV hookup scene and ultimately led to them leaving- permanently- after a brief intro...
Anyway, if properly handled, a welcoming forum would be great. kinda like having a sponsor.... I know that if I ever refered a friend here Id want to sit over their shoulder for a bit, untill they got a feel for the place... just my 2¢......
.

AlanBama · « **Reply #21 on:** July 18, 2006, 07:25:21 PM »

I'm one of the ones who voted "either way is fine", because I really just didn't have a strong opinion about it.

After reading through this thread, I believe that I mostly agree with Lisa, Dingo and David, and don't think it would be a good idea.

I am concerned about the new folks not getting the proper welcomes (as stated so well in David's post above), and I can't imagine a lot of the veterans would have time to take on the task of reading through yet another forum, I know I don't have the time.

But hey, what do I know....I can't even decide what to have for dinner.

Peter Staley · « **Reply #22 on:** July 18, 2006, 07:48:04 PM »

I've edited the poll so that folks can change their vote if they want.

Peter

Lisa · « **Reply #23 on:** July 18, 2006, 07:51:09 PM »

I respectifully remain positive of my aforementioned vote.

livingpositively · « **Reply #24 on:** July 18, 2006, 07:55:12 PM »

As a newly infected (well, diagnosed anyway)...I would not advocate a "newly infected" forum. I have learned so much from the folks who have been fighting this fight for longer than me, whether 6 months longer, a year longer or 20 years longer. I would be equally afraid that it would be more of a "what the hell do we do now", "whoa is us" forum - rather than coming here to learn how to fight the fight, which is why, I think, newly infected people probably come here to begin with.

I think it's great that the thought was run across your disk, Peter. But, I think it could end up being counterproductive.

Shane

Edit: I would also submit that, even if the "veterans" go "visit" the "newbie" forum, I would take it as more unwelcoming to "graduate" to the "veteran" forum. Kind of like going from middle school to high school. Only here, you never get to be a senior. Haven't we all paid our admission to the same fair? While some have indeed been on the proverbial roller coaster many more times around, it's still the same fair.

RAB · « **Reply #25 on:** July 18, 2006, 07:58:24 PM »

Quote from: Peter Staley on July 18, 2006, 07:48:04 PM

I've edited the poll so that folks can change their vote if they want.

Peter

It looks the same to me, what did you "edit"?

"EDIT" to say: Never mind, I understand now.

DCGuy511 · « **Reply #26 on:** July 18, 2006, 07:58:59 PM »

I started my post before I read everything. I do understand RABs remarks about feeling negative or feeling like not posting. It has not happened to me here, but it did happen in my 'Newly Diagnosed' support group. I remember when I felt like- "gee, I'm tired of this new S&$#@, guess its time to graduate."

Steve

Lwood · « **Reply #27 on:** July 18, 2006, 09:00:40 PM »

ok,
I dont think that anyone is suggesting a 'Newly Infected' forum as a place for anyone to hang out in for an extended period, more of an extended Q&A version of the Welcome Thread.

Im reminded of a story that a coWorker once related about coaching his sons little League team, one of the parents had an issue with Coach about some minor crap like having the kids uniform clean or the kid wanting to play his Gameboy during practice or something... the thrust of the argument was basicly "How dare you tell MY kid how to behave"...
Coachs response was quite simple and to the point, " If you Took care of these problems at home, I wouldnt have to deal with them in the Field "....
This translates more or less to the idea that if we ,as existing members, stepped up and welcomed new members there wouldnt need to be an official forum for them. By and large this is done with every new member that Ive ever seen, but theres always the potential for someone to fall through the cracks, especially given the new influx of new folks here lately.
Hey , what would it hurt ?? Why not a safe place for 'newbie questions ?' and somewhere to take that much needed DEEP BREATH, or twenty..??
just a thought...

Life · « **Reply #28 on:** July 18, 2006, 09:01:00 PM »

From a Newbies point of VIEW..

We all, if lucky, get started in the AM I forum. And we learn about HIV and go through the process of getting tested etc. The fears alone in this section are mind-boggling. We then find out that we are positive. We are then THRUST into the "mainstream" of being diagnosed and graduating into the LIVING WITH forum. We get welcomed and that's all great, but what happens to those who aren't "picked up" and held, and just slip right off the board?? Sure some of the people who have responded were indeed picked up and posts were continually aimed at them. But have we not also lost some? I submit, the newly diagnosed are NOT LIVING they are BARELY SURVIVING and need moderated "closeness" just as Ann does in the fears section so well. They do not need to here the everyday banter that goes on in the LIVING WITH that can infact scare the crap out of someone who is uninformed and does not know what the next step is. Furthermore, this forum I feel would be a fantastic way to slip into the LIVING WITH forum once someone has become comfortable in his/her own skin. This is not to segregate, its to educate, to make the newly infected feel integrated with fellow newly infected. Don't think of this as isolation but more of just close knit with alot of "talking to". To allow a thread not to simply roll off the board as it can in LIVING. I speak from experience, when I came here 10 months ago, I was scared to post and did not fit in. I felt like an onlooker looking in on a community that has been around along time. I wanted what you had, but was really not hooking on anything. This forum I think would allow people to grow and be comfortable with others who are helping them (people with experience) and in time, they move into LIVING comfortably... I think what Peter is suggesting is a positive one for those newly positive and will give them the close support they so desperately need at this phase of their orientation into this world of ours, - - and theirs.

manchesteruk · « **Reply #29 on:** July 18, 2006, 09:31:12 PM »

I voted no on this I think it's a form of segregation I think a living with forum is enough.

ImagineFL · « **Reply #30 on:** July 18, 2006, 09:38:49 PM »

I voted no also... I won't explain why, as it has already been stated.

Both sides have good and bad points. I just think it overall would be better for them to use this forum. Its such a vast collection of thoughts, medical advise and support. Why reinvent the wheel?

Patrick

Terry · « **Reply #31 on:** July 18, 2006, 10:50:39 PM »

Quote from: Peter Staley on July 18, 2006, 07:48:04 PM

I've edited the poll so that folks can change their vote if they want.

Peter

You can not change nor can you stop what you started!

Just to add to what I have already said.

A hundred thousand years ago when I was first diagnosed as having AIDS I thought that I had taken matters into hand and did what the doctors told me to do. I also listened to my Ex, who had me, sign everything over into his name as beneficiary. [Never said I was smart]

I was not, at that time computer literate. Hell I flunked English 101in school.

One day I typed in HIV/AIDS on my computer.

AIDSmeds.com site popped up.

I needed to know about the medications that were out there at the time. I got the answers I needed from this site. There was this guy if my mind serves me correctly named DOC/dc or something like that. I hung on to every word he typed. He was so very informative of what was actually going on in the medicinal fight against AIDS.

Back then I don’t remember ever hearing of attacks being made or put downs being put on ANYONE.

Also back then I had not introduced myself. I still haven't to this day. (Dam it was hard enough for me to type with one finger) I just jumped in and said what I wanted to say and asked whomever I wanted to ask a question.

This forum has changed a great deal since then. And I’d have to add, for the better.

[Now this is off of the record.] [Because I’m my own person] I wouldn’t be alive today if it were not for the people here at AIDSmeds. If Joe had not discussed having depression, had Tim not talk of having a sex life. Had Jonathan not had confused the life right out of me or Matty or Anniebc or Lisa or Rab, Bucko or for that matter ALL of you that have allowed me to be ME. (I’d have been myself without you.) But it was and still is so much more fun running this gambit together.

Peter, do what needs doing. What you have done so far has made my life a whole lot easier! I thank you for that. I’m an old fuck that’s going to pass away from the infirmities of old age rather than from the debilities of a life suffered with the drugs to counter AIDS.

I also thank everyone who considers themselves a part of this forum for just being yourself, whether I or anyone else gives a rat’s ass!

Terry

David_NC · « **Reply #32 on:** July 18, 2006, 11:03:27 PM »

I was reading all the new replies to this post and remembered something that's important to me. When I reply to a post, I try to keep in mind who I'm 'talking' to. Many people don't put any details in their profile, sometimes I don't even know if I'm talking to a male of female. Often, it doesn't matter. Other times, my response will differ. By posting an introductory post in the "Living" forum, new members are assured, as much as possible, of maximum exposure. That's a good thing. Knowing something about the poster helps make it possible to reply with something meaningful. Generally, I put thought into what I type. I try to make it meaningful. If I'm lucky, it means something to the poster. If I'm really lucky, it means something to me, and I get something out of it, too. The key to this is having a feel for who I'm replying to; this starts with a posters first posts.

David

Robert · « **Reply #33 on:** July 18, 2006, 11:28:14 PM »

This thread WOW, WOW and WOW is the perfect example why we need a new forum.

Purplerain was diagnosed less than 1 month ago. He came here looking for help.

He's never coming back.

VOTE YES ON PROPOSITION FOR NEW FORUM FOR NEWLY INFECTED

emeraldize · « **Reply #34 on:** July 18, 2006, 11:39:02 PM »

David_NC · « **Reply #35 on:** July 18, 2006, 11:53:51 PM »

Quote from: Robert on July 18, 2006, 11:28:14 PM

This thread WOW, WOW and WOW is the perfect example why we need a new forum.

Purplerain was diagnosed less than 1 month ago. He came here looking for help.

He's never coming back.

VOTE YES ON PROPOSITION FOR NEW FORUM FOR NEWLY INFECTED

Robert, that post about 'Pecking Order' was one of the first posts by a new member who's fairly newly infected. It most likely would have been posted in a "Newly Diagnosed" forum, had one been present. While it might not have had all the heated discussion from the 'seasoned veterans' of HIV, it would have still caused some turmoil.

David

jkinatl2 · « **Reply #36 on:** July 19, 2006, 01:48:22 AM »

I do know this.

because of my efforts in the AM I INFECTED section, I have felt personally isolated from these forums. Because of my experiences with HIV and AIDS, I have not felt comfortable sharing my experiences with Gleevec and CML stuff here. Because of the inclusive nature of the forums, I have felt increasingly isolated.

I bring a lot of it on myself, by being a science guy on the AM I INFECTED forums. Is that the price people like myself are obligated to pay?

If so... what happens when I die?

lydgate · « **Reply #37 on:** July 19, 2006, 03:57:34 AM »

I voted yes. Three points.

1. The shallow end/deep end analogy.

It could be said that there's a case for learning how to swim by being throw into the deep end of the pool and managing as best you can. But it can be scary, and you flounder, and all you want is firm ground again. Many people who are newly infected/diagnosed are in a bewildered state. Many of them also don't know very much about HIV. (I'm glad two recent members were candid enough to admit on another thread that they didn't know whether having a higher CD4 was good or bad, ditto for VL. Interestingly, both members voted no.) But I've tried to send two younger newly infected friends of mine to this site and both said that they were left a bit dazed, that they coudn't filter out the stuff that was relevant to them, at this point, from the background "noise" (for them). I prefer to learn how to swim -- in fact, did learn how to swim -- starting at the shallow end, with others as inexperienced and apprehensive as I for my first companions. Some people learn faster; they can shuck off those inflatable plastic floating things and move on. But education and comfort levels cannot (or should not) be rushed. I do not see this as segregation. That would happen if we divided forums into gay/straight, male/female, normatively white middle-class Anglo-American/everyone else etc. This is about the "newbies" having their own space for a conversation, exchanging notes, talking about first reactions, first steps etc. And as Jonathan pointed out, it hardly means that those who are active in other forums will be excluded from the newly infected/disgnosed forum -- in fact, they'll be necessary. And I stronly suspect that a person who uses the newly infected/diagnosed forum (if it's begun), and found it useful, will almost certainly want to check out other forums, and return to the "newbie" forum as a kind of mentor, from time to time.

2. The new kid in town.

There are, as I type, 1301 members of the Community Forums; yet the majority of posts are written, of course, by a few score highly active members. Since AidsMeds, in another incarnation, has been around for many years, several members have gotten to know each other in a personal, forum-unrelated, capacity; or are at least pretty familiar with addressing each other in this space. That is wonderful and inspiring. For the new kid, though, such familiarity (and the personal references and jocularity that comes with that) can seem like a kind of chumminess that's hard to penetrate. The people on these forums are incredibly warm and welcome; the deluge of newcomers is a sort of proof of that. But I think that several more newcomers would be more gregarious (as it were) if their first introductions took place a little removed from the main "action."

3. Segregation?

I submit that if even more newcomers join, and start with their life stories in Living With, a kind of chaos is going to follow. I'm just not sure that Living With is the place to have threads -- which are undeniably important, in fact crucial -- with twenty or more posts all of which say "Welcome!" or "Glad you found us!" or "Keep your chin up!" To adapt something another member said earlier: people who've lived with HIV for twenty years or more, who may have nearly died because of it, have different needs (very often), and different things to say, from someone just beginning to confront the impact of HIV on his or her life. If this is considered segregation -- after-all-don't-we-all-have-the-same-bug? -- then so be it; segregation is not innately a negative thing, it depends on the reasons behind it and the consequences of it. I prefer to think of the whole matter as having open and non-exclusive clubs.

I understand the resistance to balkanizing the forums. I suggested, about a month ago, that there might be a separate Mental Health Issues forum. The responses, and reading Living With more closely, convinced me that this was not necessary, that mental health stuff was well-assimiliated into the Living With forum. This issue seems to me to be different. There will be a moderation headache. And some time will be diverted to mentoring newcomers in a separate forum (if it is created). I just think it's worth it.

Jay

gerry · « **Reply #38 on:** July 19, 2006, 04:59:45 AM »

I think this is a good time to revisit the issue and this time, I voted yes. The activity in Living With has increased very dramatically (which is good) that it takes only a couple of days for threads to be swept to the second page or further. I can also imagine that same activity can be overwhelming or intimidating to someone new. It might serve as a stepping stone to encourage initial postings in an area where tension might not generally run as high as it sometimes does in Living (which is a totally expected phenomenon in a group as diverse as the participants here). I think it would be a place where someone new can opt to start and not feel too overwhelmed, intimidated or lost. It might also become a place where other not-so-frequent posters might be inclined to post and participate more. The mods would have to figure out the "ground rules" for moving threads and such. As to when one "graduates," that would be up to the member, but I don't think that would be a big issue. I think it's worth a try and if it becomes apparent later that it's unnecessary, it can always be merged back with the "Living."

Cherie · « **Reply #39 on:** July 19, 2006, 08:09:49 AM »

Well Gerry said what i was going to write. So l voted yes.

DingoBoi · « **Reply #40 on:** July 19, 2006, 10:02:47 AM »

after reading some of other's thoughts on this, I've changed my mind to vote yes.

There are valid points and concerns on both sides.

However, my main reason for switching after more consideration is that, well... we are getting a bit crowded.

There is a higher influx of people here especially with all the poz links to aidsmeds.

lydgate summed it up quite well.

If the forums were how they were a year ago. I would clearly have voted no. Now.... the forums are a lot more active and perhaps this more special careful handling in a new forum would provide a feeling of not totally overwheming a new arrival.

If they can't filter through the stuff here starting out, the forums are a failure. Sure, we have the search feature, but perhaps having them all in one forum will answer alot of their questions and it might just be good to have the newly diagnosed see that there are others out there too newly diagnosed as well.

A new forum would require a high degree of moderation and, I think, a gentle shoving out of that nest when it's time and pushing them to the main living with with repeated encouragement.

just like urban planning, when a single road (living with) might have been fine 5 years ago.. or even one, it's now gettting a bit cramped, so do we put in a bypass or expressway? and ease some of that congestion.... or not.

I guess what I'm asking is where do you see the traffic a year from now? At these levels or much more?

Blixer · « **Reply #41 on:** July 19, 2006, 11:56:55 AM »

Wow, so much has been said and this is a tough issue. I voted yes and then read the posts and began questioning myself. But I'm still a yes vote because I'm kind of in that newly diagnosed category. I was diagnosed 6 months ago and I came into these forums and after reading a few posts I decided I needed to stay away from this place. I was reading all sorts of horror stories and I was beginning to think this was the end of my life. Now that I've adapted a bit, I can handle it better and I realize that there is a lot of background behind some of those scary things I read. I just wasn't ready for all of that and I got my early information elsewhere.

So, there are valid arguments on both sides. And for another forum to work, it can't just be only recently diagnosed folks posting to each other. There would have to be some encouragement of the long timers to head over to the other fourm and read and respond. The Living With seems to be the most active one here. But several of us go to the other forums at least periodically to share what we know. So the idea of segregation might not be an issue at all. And the concept that people wouldn't migrate over doesn't necessarily have any merit either. I spent my first couple of months on another set of HIV forums that had an "I Just Tested Positive" forum. That is where I started. I stayed in that "newly diagnosed" forum for a few weeks and then I migrated over to the Living With. It was just the natural thing to do and it was guided by the others posting on the board. I think it all depends on the dynamics of the forums and those who have been around for a while. I don't think that big dividing wall between the oldies and the newbies would develop.

Lots of good reasoning in these posts, but as someone fairly new to this whole thing I'm pretty sure I would have hung around here more early on if there would have been a Forum for the Newly Infected.

ACinKC · « **Reply #42 on:** July 19, 2006, 12:04:18 PM »

Put me FIRMLY in the " MAYBE " camp! I was newly diagnosed when I first found this site 2 years ago. Quickly learned the basics and proceeded to TRY and not think of my status anymore. Recently however HIV has hit me like a ton of bricks and this site with all the old timers AND us newbies is a blessing. I would lean to a no. But wouldnt mind a trial run either.

So really, as usual, Ive got nothing to add!

There is 2 minutes of your life you'll never get back!

killfoile · « **Reply #43 on:** July 19, 2006, 06:01:45 PM »

I don't have a real position, but if you start a new forum, exactly who is going to support that forum and moderate it? Aren't you going to be asking some members to "monitor" the new forum, otherwise you have newbies coming in and talking with newbies and it's like the blind leading well you know. So I'd vote yes, if you are going to staff it and no if you are not. This seems more of an issue of welcoming new members, rather than segregating the forums even further.

Just because the world continue to get more complicated, does not mean we must do that here. I thought the true power of this place was the fact that we do co-exist and quite well at that. Yes some people fall through the cracks, but you will never design the perfect safety net. I don't imagine I would spend much time in such a forum, because I did the Am I forum and I only lasted about a year. I don't do well having to sooth the same nerves, just different person, a couple dozen times each day.

I'd rather see us work at having maybe a mentor program or something, where new members could request a contact by a member to help them feel welcome. Sort of like a welcome ambassador. I just think you can enhance the experience here without further dividing us. Isn't enough that society insists on dividing us, do we have to do that here?

livingpositively · « **Reply #44 on:** July 19, 2006, 06:07:01 PM »

I was going to include several quotes here first, but have decided against it as it would get too lengthy. And there were too many things to quote.

BUT...

#1 I personally came here, sort of by accident, and was elated to be able to read other people's personal experiences - good or bad. Yes, the "veterans" have been through hell and it is scary to read about. But HIV IS scary. By tucking the "newbies" away in their own little corner, doesn't that only perpetuate the "difference" in the HIV of yesterday vs the HIV of today? Everyone wants to debate the "manageable disease" point, then on the other side "protect" the "newbies" from scary stories. Can't have it both ways, folks. Additionally, by hiding them away in a corner, we take away from the "veterans" like Moffie, Sonomabeach, Aztecan, Joe, Alan, Ray, etc (I didn't exclude intentionally, those were just who popped into my mind. No disrespect intended at all to anyone) who have been fighting this fight since I was but a young teenager. Before I saw these folks (not used as a generational term, but an all inclusive to include men and women) on line here, I would have guessed that anyone diagnosed that long ago would have long ago succumbed to this disease. There has recently been several threads like http://forums.poz.com/index.php?topic=1939.0 and http://forums.poz.com/index.php?topic=1690.0 which allude to the fact that the "past" and those who have gone before us should not be forgotten. The "newbies" need to know this and they will not get that in a "newbie" forum. They need to know who participated in drug trials so they could bet better "treatment". They need to know who has fought "city hall" to get programs in place, regardless of those programs' own issues. They need to know who has buried 10, 20, 50, 100+ friends over the years. I am in total awe of the "long timers" and they have my utmost respect for sticking this out and paving a better road for "us". Yeah, so sometimes their stories are scary (so is a lot of stuff in history, but we learn about it none the less) and maybe their experiences won't happen to the "newbies". Who can answer that. Drugs have only been around for, what...10 years of the 25. We don't know jack squat about the "big picture" of "treatment". We "newbies" may end up going through the same crap down the line, nobody knows.

#2 You're correct, Jay, I did vote no even though I didn't have a good understanding about CD4s and VL. But if at least 2 of us here didn't know, how many others didn't either and just didn't say so? And how many "newbies" would be able to answer each other's questions? It looks great on "paper" that all these folks are going to run over and support the "newbie" forum and welcome them and answer their questions, etc, etc. Now I ask - how long will it last? Ann, Jonathan, Andy and many others spend a lot of time in the "Am I..." forum. I have personally read, in the few months I've been here, quite a few threads stating that "I need a break", etc, etc. Most people don't even go to the "Am I..." because they can't deal with all the "dumb" questions. It's exasperating to answer the same questions over and over again. Why will the "newbie" forum be any different? A percentage of people will visit, but you can only throw the welcome mat out, offer your condolences for "your new diagnosis", etc so many times before it's going to get old and boring...and left. At least in this forum, if you don't feel in a welcoming mood on any particular day, there are many other people already here. They don't have to make a "special trip" somewhere to pick up the "slack". It doesn't necessarily happen even without a "special trip." There are two "newbie" threads - way off the first page now - where 295 and 323 people viewed, yet less than 10% of the viewers responded (14 and 23, respectively). Probably less than that, actually, because the "newbies" typically respond to the welcomes a few times as well.

I could go on and on, but I'm sure I've already overstayed MY own welcome for this post and I'm just beating a dead horse. Besides, I think I've made my point.

Sorry to get so long winded, just wanted to "rant" a little bit I guess.

Shane

edited for typos, not content.

Life · « **Reply #45 on:** July 19, 2006, 10:50:17 PM »

I just re-read all the posts and I still see this as something very beneficial for both US and those first coming here with BEING DIAGNOSED POS. I will always stay neutral in any final decision but here are a few more things I think are important to understand..

Certian pos folks do not have the problems others face when faced with HIV diagnosis. They may know other people living with HIV, they may live in a big city that has support groups and participate in their ASO's. I didn't have that option. I dint even have an option to find a councilor in my area who understand what HIV means and what is now available.

I would pray that if the powers that be try a new forum, that it would be the old timers or even newly diagnosed who have adjusted to come to this forum and help rescue these folks from the utter dispair, confusion, loneliness, disclosure, meds, life questions that they all will be questioning. Shane I know this will not isolate these newbies from anyone. In fact it will be a draw to read the forum at least once prior to going to the living section and talking about other things a bit deeper in the LIFE ISSUES of living with HIV.

I still clearly see a decompression time for these newly infected to realize that life is truly worth living. In this ever growing infection rate, we are going to see more and more people coming into this site for help and guidance. Now they have a place to sit. Their posts most likely will not roll off in the first day as they can now in living with. You must admit that currently, if you miss one day in LIVING WITH you got a couple of pages to read up on. You might not even know which ones are newbies reaching out if their title to their thread is not clear....

1. Will I die?
2 Will I loose my job?
3. How to I tell my loved ones?
4 I feel like killing myself.
5. I have destroyed my marriage.
6. How do I tell my partner?
7 I have no insurance.
8. I have Co-infections.
9 My partner left me.
10. How can I live with this?
11. Meds!
12. The list goes on and on.

These are the questions the old timers can come in and work with the newly diagnosed AND BOND! Their threads will most likely stay on page one for sometime. They get to find a mentor or an oldtimer who they grow attached to. They feel comfortable opening up to these people. They are under their wing. That feeling of being loved ever so much more than what is happening now will be amplified. People will learn about this site with a forum that is dedicated to the support of a newly infected person. Much like an AIDS crisis hotline. Cries can be more directly comforted with the moderator taking close care of what threads are acceptable in this particular forum. Just as they are in the WW's.

If we are to grow this site especially for the newly infected. which is our legacy, they will come. They will find that close support, and in time, they will grow up and out along with those who they have learned from and become active in the Living With. Some may actually have a good grasp of HIV and move directly into Living. But its the others who have no support, who need the support and that's what our charter is I believe. I see you Shane and so many others above who could dramatically change the dynamics of recovery in a very special way..

Shane also mentioned that this will become boring and repetitious. I submit, that each individual will have his own core set of circumstances he/she will want to share in a closer confidence of a smaller forum. This for the current site users will do YOU just as much GOOD as you have just done for the newly infected... I believe this to be true...

"In order for us to KEEP it, we have to GIVE it away"

Please, this is just my opinion, dont be angry with me. I am still a newbie and I don't take it very well mentally.. I am just surviving myself..

Love & Support and lets see what happens.....

gerry · « **Reply #46 on:** July 19, 2006, 11:30:05 PM »

Joe, from the outside looking in, I do not think the proposed new forum would necessarily be flooded with posters whose "nerves" need to be "soothed." It doesn't even have to be a forum that the newly diagnosed would need to use if they are comfortable using the busier Living With formum. It might seem counter-intuitive but I actually think it will diminish the sporadic appearance of posts you were alluding to, just because if the forum itself is less busy in terms of the number of new threads created (my assumption), it would be easier for someone new to the site to read through the threads that are there, and perhaps not have to repeat the concerns that were already raised,or just join in by adding to the thread. The tremendous activity in the Living With makes this a lot more difficult to happen because these threads get burried very easily by newer threads that get started or are surfaced. It gets overwhelming to have to go through pages of threads to try to find out if a newcomer's concern or question or whatever has already been discussed before. So the easiest thing to do would be to just post again (hence generating the feeling of needing to answer the same question over and over again). By the same token, it's hard to unearth threads that contain valuable input to link up to someone's new inquiry if the other thread had been burried pages down.

I may not be explaining it well, but I hope that makes sense. My sense is, judging from the history of the forums, it would actually encourage more participation.

livingpositively · « **Reply #47 on:** July 19, 2006, 11:35:44 PM »

Eric, I would never be angry at you (or anybody else, for that matter) for expressing your point of view. You know what they say about opinions...(just kidding)

I just felt the need to take my argument, if you will, a step further and show some supporting "evidence" as to why I think the way I do. I, too, am pretty new to this (diagnosed in March). I do not begrudge anyone for stating their opinion, whether it counters my own or not. That's why this thread was put here.

I would like to say that I am duly impressed with everyone who has posted in this thread. Clearly, there are many differing opinions - some differ more than others. Yet, nobody has "gotten into it." We have had/are having a REAL discussion here, like civilized human beings. I love it.

If the new forum is indeed implemented, I will support it and the "members" of it, as I would hope would have happened for any of us. I will admit right now, I'm probably one of those that "will need a break" occassionally. I don't have the patience that Ann and Jonathan, etc possess.

Anyway...nuff said.

Shane
(who does rather enjoy a heated thread every now and again)

newt · « **Reply #48 on:** July 20, 2006, 02:48:36 AM »

It's a finely balanced argument. I have changed my vote to either way.

Peter, if you do go for it, the choice of name for the forum seems important. Personally, I dislike the shorthand Poz, but I know many people prefer it. The important thing to my mind would be to find a title that discourages speculative creep from the Am I Infected? forum. I Just Tested... doesn't quite capture everyone, people might be recently diagnosed, or even somewhat longer but just starting to deal with it, and therefore part of the "new" crowd.

joemutt · « **Reply #49 on:** July 20, 2006, 04:13:13 AM »

For me it can go either way. But if you do, you might incorporate something like "pozmentor' in it as to have a link to the experience of the not recently diagnosed (or old timers, if you please)

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