Announcement

Collapse
No announcement yet.

Special Threads For VIP Members

Collapse
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Special Threads For VIP Members

    Is it a common occurrence for certain members of MS World to not only monopolize the boards, dominate the conversation and even get special threads with their username in the title? It’s turning into a bizarre VIP treatment.
    Or is this a rare situation?
    I haven’t been a member for very long so I’m hoping one of the older members can chime in here.
    I haven’t been posting much and to be honest, I’ve been really turned off by what the boards are turning into. I said months ago when I first began posting that I was disappointed but I held out hope that things would turn around. They haven’t. While it’s a little quieter right now, it’s a lull and it will start back up again. It’s a predictable pattern at this point.
    I understand wanting to help someone in need, but at what cost? Is all of this special attention actually helping in a meaningful way or is it feeding into other issues such as a need for attention?
    Just look at the amount of replies in specific threads and tell me what it says to other members who have their own questions, issues, rants or stories to share.
    Is the “increased traffic” really worth it if others don’t feel they have a safe place to share their equally valid posts?
    “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

    #2
    It is not common. I think the one new thread was started to try to get the original thread back on topic.

    To be honest, I was staying away more as I wasn't enjoying the board that much. Rather than looking forward, I dreaded checking in.

    Having said that, I continued to engage with "VIP" for two reasons: hoping that eventually someone who appears to need help would recognize it and even more so, for any other person reading and struggling to accept a diagnosis. But I am now closing that chapter. It has been said enough.

    I hope you stay, as well as others who have been quieter, return.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      Usually the only time a Thread would be directed at someone is when a poster had a specific question for another poster. Some of us "old timers" know some members had experience with a specific topic more so than possibly other posters. Even when this happened responses from other members were welcome.

      No comment on what is happening now
      Diagnosed 1984
      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

      Comment


        #4
        Originally posted by pennstater View Post
        It is not common. I think the one new thread was started to try to get the original thread back on topic.
        IntoDust -- I started a thread for that exact reason. A previous thread, started for a different reason was getting off topic. Rather than continue to put the focus on VIP on that thread, I decided to respond with a new thread.

        I hope you stay and feel welcome to post more frequently -- by starting your own threads and posting on threads that interest you.

        When you start new threads, or when you post on other threads, you are helping to move the message boards in the direction that you wish to see them go.

        I also hope that you feel free to avoid the threads that don't interest you.
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
        .

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment


          #5
          Originally posted by pennstater View Post
          Having said that, I continued to engage with "VIP" for two reasons: hoping that eventually someone who appears to need help would recognize it and even more so, for any other person reading and struggling to accept a diagnosis.
          Speaking as someone who showed up and began posting right after their diagnosis, being bombarded with these threads was anything but helpful. It was overwhelming and chaotic. I tried to engage in the conversations on the site but it always led back to where it started. Frustrating doesn't even begin to explain how it felt.
          Even posting on other threads didn't feel safe because I was always waiting for them to turn into an attention grab and derail. Plenty of them did and these really good threads circled back focused on one person time and time again.

          But I am now closing that chapter. It has been said enough.
          A lot of us have also chosen to bow out and unfortunately it's also driven some of us away from posting at all.

          It's impossible to help someone who doesn't help themselves. And when that help is beyond the scope of anything any of us are qualified to offer, at what point do we disengage?
          “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

          Comment


            #6
            Hi IntoDust,

            I'm at MSW for 10 yrs, maybe two or three times I've seen someone's handle in a thread title. Stayed away for a few years but the reason was to ground myself not really related to the day-to-day intercourse / posts.

            Responses have often taken a circular pattern. Many here know each other and can be counted on for sound advice to the old questions from a new member.

            Sometimes the circle becomes a spiral when the advice is not heeded, or dismissed, or seemly not appreciated. It's an emotional response. We are all susceptible. Including the OP. You've said as much... "It’s a predictable pattern at this point."


            Originally posted by IntoDust
            I understand wanting to help someone in need, but at what cost? Is all of this special attention actually helping in a meaningful way or is it feeding into other issues such as a need for attention?....Is the “increased traffic” really worth it if others don’t feel they have a safe place to share their equally valid posts?
            This is the heart of your concern. Need for attention? Maybe. Increased traffic (on MSW)? I doubt it. But I do think that the diversity present here at MSW creates and is open enough to offer a safe environment for a new member.

            I get your point Re: VIP Treatment... A thread title should or could not be addressed to a specific member. Within a thread, fine.

            Mods? Worth talking about?

            Comment


              #7
              Originally posted by 502E79 View Post

              I get your point Re: VIP Treatment... A thread title should or could not be addressed to a specific member. Within a thread, fine.

              Mods? Worth talking about?
              I'll refer your opinion to the mods so we can talk about it.

              My first reaction? We have enough rules and don't need more "shoulds". It's not done frequently; it seemed a better option than continuing to hi-jack the other thread, which is another complaint.
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment


                #8
                Originally posted by IntoDust View Post
                Speaking as someone who showed up and began posting right after their diagnosis, being bombarded with these threads was anything but helpful. It was overwhelming and chaotic. I tried to engage in the conversations on the site but it always led back to where it started. Frustrating doesn't even begin to explain how it felt.
                Even posting on other threads didn't feel safe because I was always waiting for them to turn into an attention grab and derail. Plenty of them did and these really good threads circled back focused on one person time and time again.


                A lot of us have also chosen to bow out and unfortunately it's also driven some of us away from posting at all.

                It's impossible to help someone who doesn't help themselves. And when that help is beyond the scope of anything any of us are qualified to offer, at what point do we disengage?
                I'm pretty new too and a lot of the above resonates. But I kind of realized that possible symptoms of MS can be like mental illness (depression, anxiety, denial, etc). So really, in a way these threads that might seem circular are no different from someone with a symptom that puts them in a wheelchair posting. I don't think "resolution" is really expected, and am fine letting the big kids handle it. There's still something to be learned.

                My sense is keep coming back and stay, and look for places where you can offer support. They will crop up.
                All the best, ~G

                Comment


                  #9
                  Originally posted by Mamabug View Post
                  it seemed a better option than continuing to hi-jack the other thread, which is another complaint.
                  Mamabug, I understand why the new thread was created and I can't say I would have come up with a better option in the moment. I also understand that the first time this happened it was done with the intention of truly helping someone who was struggling.

                  We've been going in circles for the past five months and I just don't feel that it's been productive for anyone.

                  Please, if anyone begs to differ and genuinely believes that this has had a positive impact please speak up. I don't want this to turn into a rant or one sided thread where we can't explore all sides of this issue.
                  “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

                  Comment


                    #10
                    Originally posted by gargantua View Post
                    But I kind of realized that possible symptoms of MS can be like mental illness (depression, anxiety, denial, etc).
                    Oh, for sure. Whether it is situational, chronic or organic in nature, depression is relatively common for people with MS. But no matter what the cause is, it is a symptom that should be treated as best it can be. This takes a lot of work and the longer it goes on, the harder it will be.

                    So really, in a way these threads that might seem circular are no different from someone with a symptom that puts them in a wheelchair posting.
                    I see your point, but I look at it a little differently. If we knew someone who needed to use a wheelchair, yet kept refusing to admit the need for one, eventually we would stop trying to pick them up off the floor - especially if they were adamant that they didn't need help. How many times would people be willing to break their backs for someone who not only doesn't appreciate it, but refuses to acknowledge it?

                    The difference, I think, is that while you can ignore numb patches or tingling, it is another thing to try to ignore symptoms that affect how you function - whether this is physical or mental, motor or cognitive. Some symptoms have a real impact on quality of life even if they are invisible.
                    “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

                    Comment


                      #11
                      Just my.02 but if something about someone else or something else is bothering you, then that's on you. Everyone, unless blatantly disrespectful should have a seat at the table. Engaging that individual or participating in a certain thread is a choice.
                      The future depends on what you do today.- Gandhi

                      Comment


                        #12
                        Originally posted by Boudreaux View Post
                        Just my.02 but if something about someone else or something else is bothering you, then that's on you. Everyone, unless blatantly disrespectful should have a seat at the table. Engaging that individual or participating in a certain thread is a choice.
                        Agree. But it used to be common courtesy for an individual to start a new thread on a topic if they see they are veering off topic and/or hijacking another thread. Easier to ignore that way.
                        Kathy
                        DX 01/06, currently on Tysabri

                        Comment


                          #13
                          Hi IntoDust! I hope you are doing well.


                          I have been a member for a decade and it's uncommon to have someone's name in the title, especially a newer member. It's more common for a new member to arrive and initially start a bunch of threads seeking answers. It may appear they are monopolizing the boards for a little while, but over time it balances out. Some people start a new post for every question that pops into their minds and others may ask a dozen question in a single post. I believe these are just personality differences between people.


                          I'm sorry that you may have felt marginalized or that others are getting special treatment on this board. I can assure you that it's not intentional and your imput IS valued - just like this post. I understand where you are coming from and tend to avoid the posts that you are referring to. I believe others have also said their peace and will engage less moving forward. That's how these things tend work themselves out.


                          I'm glad you posted this because if you are thinking it, others probably are as well. Rest assure the past few months of the board activity is an anomaly. I hope you will hang around a bit longer, ask your questions, provide your feedback and see if the board doesn't improve for you. Thank you again for voicing your concerns.


                          I wish you well...

                          Comment


                            #14
                            Originally posted by IntoDust View Post
                            Oh, for sure. Whether it is situational, chronic or organic in nature, depression is relatively common for people with MS. But no matter what the cause is, it is a symptom that should be treated as best it can be. This takes a lot of work and the longer it goes on, the harder it will be.


                            I see your point, but I look at it a little differently. If we knew someone who needed to use a wheelchair, yet kept refusing to admit the need for one, eventually we would stop trying to pick them up off the floor - especially if they were adamant that they didn't need help. How many times would people be willing to break their backs for someone who not only doesn't appreciate it, but refuses to acknowledge it?

                            The difference, I think, is that while you can ignore numb patches or tingling, it is another thing to try to ignore symptoms that affect how you function - whether this is physical or mental, motor or cognitive. Some symptoms have a real impact on quality of life even if they are invisible.
                            I can't even go into how dangerous denial is to us physically, or how easy it is to live in denial as MS slowly creeps up on you and then pounces.

                            BUT...

                            if someone with possibly an emotional symptom caused by MS is creating a dynamic that seems counter-productive here, that does not mean things should be changed. Due in part to that symptom, the way a person uses a forum might be totally different from the way someone in a wheelchair or who is deciding on a colostomy asking a more practical question uses it.

                            And there are all kinds of practical reasons why people who would benefit don't receive counseling. Therein lies the vicious cycle.

                            I know I just made the same point again, but you have to consider it more. There are decades-old members here who respond to DC over and over. Those older forum participants are working on it - that doesn't mean you have to. There are new posts happening every day that aren't entwined in that stuff. Wanting to participate means finding places here where you can offer or receive support.
                            All the best, ~G

                            Comment


                              #15
                              Originally posted by IntoDust View Post
                              .... I see your point, but I look at it a little differently. If we knew someone who needed to use a wheelchair, yet kept refusing to admit the need for one, eventually we would stop trying to pick them up off the floor - especially if they were adamant that they didn't need help. How many times would people be willing to break their backs for someone who not only doesn't appreciate it, but refuses to acknowledge it?
                              I have reached out to people on this board that rebuffed my offer of help and /or ignored,or even refused to acknowledge what I was trying to say. As I have a strict budget on my use of 'spoons' I felt that it was on them at that point. And so I bowed out of their concerns. If they figure it out then great, if not then I feel that I have invested all that I am willing to invest. At that point I find somewhere else to invest my interest - or even start a thread about something that interest me.

                              Originally posted by IntoDust View Post
                              The difference, I think, is that while you can ignore numb patches or tingling, it is another thing to try to ignore symptoms that affect how you function - whether this is physical or mental, motor or cognitive. Some symptoms have a real impact on quality of life even if they are invisible.
                              The VIP that you are talking about actually has, IMHO, managed to find a way to survive. A little denial? Maybe. But she is living a productive full life to the best of her ability, and is even 'happy' at times now.
                              After 25 years MS dx, most people wouldn't guess that I have MS - or any other chronic disease (I have 3). Do I ignore these conditions? Yeah, I suppose that I do most of the time. I take my meds, eat correctly and make an effort to move every day. And I too live a full productive life. I am not in denial. I will speak about MS, diabetes or thyroid problems to anybody that has a desire to listen, but it is not my focus in life. I have too much else going on that is, at this point in my life, more important to me.

                              It took me about a year to learn to function after my MS dx (but a year just happens to be the AVERAGE amount of time) and there are still times when I find myself starting the 'grief cycle' all over again. At least now I know what to expect and so these dark periods don't last as long as they have in the past. That lesson comes from experience and acceptance. Unfortunately those are traits that each person has to acquire on their own - in their own time.

                              I am sorry that you do not feel safe to post, and that you have felt slighted by other members on the board. I apologize that I haven't responded to more of your posts, but honestly, if I feel that I have nothing to contribute then I simply read. I would rather not give out misinformation, or even worse incorrect info . I mainly post about my personal experiences or offer moral support.

                              I try to keep in mind the principle behind this board rather than the personalities involved. MSWorld was created by people with MS to help people with MS. Think about it like going to an office party. You go for whatever reason, but will most likely NOT interact with everybody there. There may even be some things going on that you chose not to participate in, but that does not mean that you can't still have a good time. That is too simplistic and not really dead on, but maybe you can understand what I am trying to convey.

                              Hope to see you around and looking forward to more posts by you IntoDust .

                              Comment

                              Working...
                              X