If you can't say anything nice ...

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  • Susug
    Susug Member Posts: 193
    edited July 2017

    This all boils down to newly diagnosed fragil people who are unfamiliar with this forum who are just grasping for information and someone to talk to. They will get the hang of the forum in no time at all. We all started here green in the beginning. I love this place. It's a comfortable place to be everyone understands where we're coming from. When I was new I was happy to find y'all. That's the point I was trying to make. I believe all posters mean well or they wouldn't even bother to post It's just some times the tone a little shar

  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2017

    I believe there has to be some way of rating posters and/or posts on this site. I've heard the argument, "this is not a popularity contest", but I would counter this and say it is. By letting members like posts, and by respected members gaining "credits" new members can judge the person giving them advice. Now, I know BarredOwl is a treasured contributor here, but a newbie wouldn't have a clue about this. OK, you can tell by a member's post count that they've been here a while, but quantity doesn't necessarily equal quality.

    Beesie has put forward some constructive suggestions, but, like her, I've never seen any evidence that the site owners give a hoot about what users think. The mods said major improvements were coming this year, so let's see what eventuates.


  • Beesie
    Beesie Member Posts: 12,240
    edited July 2017

    Traveltext, I don't know that I'm in agreement with a rating system, either for posters or individual posts. I'm not sure about "Likes" either. There is a difference between likeability and expertise and I think the board needs to find a way for newbies to distinguish between those who know their stuff versus those who are blowing smoke (or even worse, fear-mongering).

    As I see it, there are two different types of frequent posters, both extremely valuable to the board. There are some frequent posters who primarily offer up emotional support and comfort, but also try to answer questions about diagnosis and treatment issues. And there are other frequent posters whose primary goal is to provide information to help patients understand their diagnoses & treatment plans and devise questions for their doctors, while of course also trying to be emotionally supportive. (It's the second group that I think this thread is aimed at.)

    The first group includes some members who are extremely well liked, but who may not always provide reliably accurate testing/pathology/treatment information, particularly because they tend to travel all over the board offering emotional support and inevitably end up in areas where they don't have experience and knowledge. The second group includes some members who have tremendous knowledge in specific diagnostic or treatment areas, but their posts may sometimes come across as being too detailed or too factual or just not 'warm' enough. And even these individuals usually don't have expertise in all areas of breast cancer.

    Having a system where members give a thumbs up or press a "like" button would provide no information about whether the highly rated poster can be relied upon for her/his knowledge about any particular diagnostic or treatment matter, yet the ratings might be interpreted this way.

    All a moot discussion, however, since nothing like this is ever going to happen.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited July 2017

    In my opinion we could all stand to re-read our responses to newcomers through a lens of 'how would this make me feel in her/his situation.' I've been appalled numerous times to see long-time members snap at someone who really didn't deserve it - not a 'cancer wannabe' but someone who perhaps hasn't yet filled out their profile but does provide the info in the body of their post. Or who simply doesn't have the lingo down pat. I, myself, early on was very harshly corrected by a long-time member when I quoted info received from my radiologist - and I still remember how that made me feel. I don't want to leave anyone else feeling that way.

    I do think that, in terms of profiles, the earlier comment about new members lacking the information or having privacy concerns is really important. We should all keep in mind that those are valid concerns and phrase our comments accordingly.

  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2017

    Everyone has a viewpoint and shouldn't be considered blowing smoke. If there were answers for breast cancer we would have real cures or better more effective treatments.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2017

    Most first posters come here afraid, vulnerable, and looking for support as much as help. I agree that asking for profiles straight out is not a great idea. I also think that there's no best way to reply, and often just knowing there's a sympathetic ear out there is huge thing for newbies. At least it was for me.


  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2017

    Agree with traveltext, my number one reason for coming and posting here is to help. Especially to people during that terrifying first days after diagnosis. They first hear from the medical professional but I believe we serve a real important role we've been there and we are ok they will get through this and there is hope.

  • Susug
    Susug Member Posts: 193
    edited July 2017

    Traveltext and Meow13 You both get it. This whole thing started about the first posters that just wants to here some comforting words. Then it all get blown out of proportion

  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2017

    At the bottom of the articles in the main section of this site is this:

    Was this article helpful? Yes / No

    On the discussion pages could go something like:

    Was this post helpful? Yes / No


  • wrenn
    wrenn Member Posts: 2,707
    edited July 2017

    People are usually drawn to posts that reflect their personal situation or beliefs (alternative treatments e.g.) so Imdon't think agreement signifies accuracy of information

  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2017

    I don't believe there's any way accuracy of information could be confirmed around here. I was more thinking of satisfying the poster's concerns.


  • pupmom
    pupmom Member Posts: 5,068
    edited July 2017

    I'm wondering if BCO should have a forum for Newbies, a place where they can gather and ask questions. It might cut down on the confusion of maneuvering between different forums, site rules and regulations. (As others have said, we are all clueless in the beginning and need a roadmap, stat.) Maybe the forum could include a disclaimer stating something like: Please try to be informative but kind. The newly diagnosed are looking for guidance and support. Criticism can be toxic to them in their fragile state.

  • Artista928
    Artista928 Member Posts: 2,753
    edited July 2017

    Nailed it Beesie. Good idea pupmom.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2017

    Good idea pupmom.

    It's nice that we can keep a moot discussion going! While BCO fiddles, the Internet burns with new groups. Not just Facebook, but sites like wisdo.com have big breast cancer help groups.


  • Leatherette
    Leatherette Member Posts: 448
    edited July 2017

    Good discussion! One thing I'm wondering-aren't the mods volunteers? May be expecting too much if they are ( I realize the definition of mod is to moderate), bc they may not be able to check every thread.

    Also, when I was newly diagnosed and scared, I did not read thru all the rules of posting. For some people, this could be their first time doing anything online, and they may have no clue about forum etiquette

  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2017

    I'd love to be able to LIKE Leatherette's post, rather than have to make a new post for the same thing.


  • Susug
    Susug Member Posts: 193
    edited July 2017

    Traveltext - LOL! While BCO fiddles. It is nice to keep a moot discussion going.

    Pupmom - great idea

    Leatherette I did not read through the rules when I was Dx

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2017

    I don't believe that the Moderator positions are full-time, but it's never been my understanding that they are volunteer positions. If I'm wrong about that, someone please correct me on that.

    Regardless of that, if BC.org are going to host a discussion board on a medical subject (breast cancer diagnostics and treatment), I think they have some responsibility to ensure that the information provided to people who come here is as accurate as possible.

    And no, from spending 11 1/2 years reading newbies' posts, I don't believe that most people come here simply looking for some comforting words. They come here because they are scared and confused, and most come here asking very specific questions about the diagnostic process or what their symptoms mean or what their diagnosis means in terms of treatment and prognosis. Comforting words are important but if the questions weren't also being answered, this board would have shrivelled up and died years ago, because not many people would have stuck around after their first post. They would have left and looked for somewhere else to get the answers to their questions.

    But maybe I just don't get it. And I suppose therefore that all the time I've spent over the years trying to carefully and as accurately as possible answer those questions was misguided and a waste of my time. I mean if all people need is comfort and (((hugs))), why am I, and all those maligned frequent posters, concerned about the relevance and correctness of information that's passed along?

    Oh well, maybe I'm finallystarting to see the light!

  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2017

    Beesie, you are undisputedly one of the most highly regarded and most respected BCO members. And, of course, accuracy of information imparted here is of prime importance. I don't think you or anyone in particular is being called out here, rather many members are looking for an improvement in "bedside manner." Nothing wrong with that.

    I'd live to know more about Moderator positions. Mods, can you please advise here?


  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited July 2017

    Beesie, I doubt anyone had in mind a single word you've ever written when they started this thread. Your posts offer a wealth of information, generally tailored to the specific question and they do not come across as harsh or abrupt.

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2017

    Traveltext and Hopeful, thank you!

    But yes, there actually are some people who very specifically are been called out here (though not by name) and in other threads (often by name). Not me, but then I've pretty much given up posting to newbies.

    As I've said a couple of times previously, I don't disagree that some posts to newbies come across too harshly. I understand and acknowledge the issue. But I also believe that some of the criticism is misplaced - there is nothing wrong with politely telling a newbie that posting in a different manner, or providing additional information, will help them get better responses. Newbies don't read the rules - everyone seems to agree about that - so why are people being criticized for explaining the rules to them?

    I have also been trying to counterbalance the criticism of some of these frequent posters by pointing out that they perform an important function on this board, and their efforts are made more difficult by how the board is set up and managed.

    Obviously my sense of what's important on this discussion board isn't shared by many of those posting here, nor is my respect for those who make the effort to help newbies with relevant answers to their questions. So be it.

  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2017

    Beesie, I often think of how complete your response was for lumpectomy vs mastectomy decision. In fact it is the most comprehensive I have ever seen. Maybe the board could keep some of these posts in a Newbie things to consider section. It seems hard to find the particularly good posts and maybe we need a place to keep them for easy access.

  • Artista928
    Artista928 Member Posts: 2,753
    edited July 2017

    Meow13- I've seen on other boards user threads that are worth a good read are pinned or the ones where there's a lot of good info that saves people from typing over and over the same thing are pinned. I think the problem is that since fixing this board has never been addressed that it's all too much to sort through/deal with so it stays as is, which is unfortunate because that's one reason many members eventually leave. It's not always because they are now doing well.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2017

    Beesie - thanks for understanding that many of us are just trying to educate the new posters so they can get a better response. And so their data will still be available when the thread turns to the 2nd page.

    Freya - thanks for saying that "girls" shouldn't always be told to stay in line & keep to their place & be nice. We all do have valid opinions.

    I like many others have spent much time trying to pay forward what this thread meant to me.

    I like many others, do NOT want to see Facebook type responses to posts.

    And finally, I like many others who have not posted on this thread so far, will no longer be answering many questions or trying to give useful information.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited July 2017

    I'm almost sorry that I posted anything at all. Almost sorry.

    I've sat back and watched this firestorm go. I honestly don't know where it all came from.

    To be clear - my intentions were not to malign anyone. I didn't think that I was being critical. I've gone back and reread my own posts as well as others. I didn't even start this discussion because of feeling hurt myself. It was about feeling hurt for others. And it's not just new people - although perhaps they are more thrown off by it.

    I also wasn't asking women to be "nice" like "play nice" and "don't make a fuss" and "go ahead and let people walk all over you" but simply to be kind to one another. I'm assuming that's what everyone wants.

    I came here when first diagnosed and it hasn't been that long ago. I was given lots of info by my doctors and found even more on line. What they couldn't give me was what I found on here - people who have lived through the same circumstances and could give me advice and hope and understanding.

    In reading through where this thread has gone ... I don't know. I don't knock people providing concrete and educational information. That's very important. I also applaud those who do give hugs and compassion. I don't think they are mutually exclusive, either.

    Anyway - I'm sorry that my post has touched on a nerve. It wasn't my intention to discourage long time posters. Maybe I'm a dreamer, but I think this place that's been a lifeline to me can be even better.


  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2017

    Point 6 of the Community Guidelines states: "Be nice! You don't have to like everyone, but this bears repeating: You do need to respect everyone. No name calling, no harassment, no personal attacks against other members."

    NotVeryBrave's topic title: "If you can't say anything nice..." reads, to me, as a light-hearted way of starting a discussion on board etiquette. Her suggestion was: "that if you can't answer someone's question in a helpful way then don't. You don't have to respond. Someone else will most likely come along and help that person."

    Yep, I do get that girls are conditioned early on in many mays, including to be nice. As are boys in many other ways. But politeness, or even niceness, are certainly genderless traits.

    All things considered, I think the discussion here has been useful.


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2017

    Actually, NotVeryBrave, I have found this thread to be very informative and it has helped me think more before posting. Thank you -- and to all who have contributed -- for raising pertinent issues here.

    I'm not an expert like some posters, but I do want to help others who have (or think they may have) breast cancer.

  • wrenn
    wrenn Member Posts: 2,707
    edited July 2017

    I wonder if it's about adults not appreciating being shown the way. It is a bit condescending like an unspoken way of saying "be more like me"? *shrug*

  • Kicks
    Kicks Member Posts: 4,131
    edited July 2017

    "If you can't say anything nice . . ."

    That goes both ways and to even write that is very sad. That the idea is that there is not only one way that all must follow - theirs.

    No 2 of us are the same and did not have the same DX. We did not live the same life before DX so we each individually bring a wealth of information/experiences that can be passed on to those who might be actually a BC fighter.

    I am well aware that I am not the same as most others in my DX and even more unusual in my TX plan. BUT that does not mean that I should never give input.

    Bottom line - those who say 'be nice or say nothing' are saying there is no room for other's thoughts/experiencesexperiences because they know all.

  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2017

    I didn't realise this post was critical of our posters. Correcting people should be ok. I really hope new people feel welcome. That is our main purpose to help people not turn anyone away.

    I will take care to give my honest advice and be kind.

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